The Journal of Infectious Diseases

The Journal of Infectious Diseases LESSONS FROM THE WEST AFRICA EBOLA EPIDEMIC: A SYSTEMATIC REVIEW OF EPIDEMIOLOGICAL AND SOCIAL AND BEHAVIORAL SCIENCE RESEARCH PRIORITIES --Manuscript Draft-Manuscript Number:

JID-64158R1

Full Title:

LESSONS FROM THE WEST AFRICA EBOLA EPIDEMIC: A SYSTEMATIC REVIEW OF EPIDEMIOLOGICAL AND SOCIAL AND BEHAVIORAL SCIENCE RESEARCH PRIORITIES

Short Title:

LESSONS FROM THE WEST AFRICA EBOLA EPIDEMIC: EPIDEMIOLOGICAL AND SOCIAL SCIENCE RESEARCH

Article Type:

Major Article

Section/Category:

Viruses

Keywords:

Epidemics, Pandemics, Health emergencies, Qualitative, Quantitative, Public health, Ebola

Corresponding Author:

Sharon Alane Abramowitz, Ph.D. Rutgers University Brookline, MA UNITED STATES

Corresponding Author Secondary Information: Corresponding Author's Institution:

Rutgers University

Corresponding Author's Secondary Institution: First Author:

Sharon Alane Abramowitz, Ph.D.

First Author Secondary Information: Order of Authors:

Sharon Alane Abramowitz, Ph.D. David B. Hipgrave, MBBS, Ph.D. Alison Witchard, Ph.D. David L. Heymann, M.D.

Order of Authors Secondary Information: Manuscript Region of Origin:

UNITED STATES

Abstract:

This systematic literature review compared the epidemiological (EPI) research and qualitative social and behavioral science (SBS) research published during the West Africa Ebolavirus (EVD) epidemic. Beginning with an initial capture of over 2,000 articles, we extracted 236 EPI and 171 SBS studies to examine how disciplinary priorities affected research conducted during the EVD response, with implications for pandemic response effectiveness. Building on this research, we set forth a roadmap for the closer integration of EPI and SBS research in all aspects of pandemic preparedness and response that incorporates the lessons of the West Africa EVD outbreak. Key priorities include: (1) developing the capacity to systematically quantify qualitative sociocultural variables, (2) establishing interdisciplinary collaborations to improve "risk segmentation" practices, (3) creating and pre-positioning qualitative indicators and composite sociocultural indexes for rapid deployment in outbreaks; (4) integrating novel systems with community resources; (5) developing new techniques for modeling social mobilization and community engagement; (6) prioritizing good data and complex analyses early in emergencies, and (7) learning from past experiences. Our findings support a program of action that situates data collection and analysis in real-time, recursive, integrated efforts to move community attitudes, behaviors, and response practices into the centre of epidemiological research.

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Cover Letter

To Whom It May Concern: My co-authors Alison Witchard, David Heymann, and David Hipgrave and I are pleased to submit the article “Lessons From The West Africa Ebola Epidemic: A Systematic Thematic Review Of The Epidemiological And Social And Behavioral Science Research” for review to the Journal for Infectious Diseases. After careful consideration, we have determined that the Journal for Infectious Diseases is our preferred target journal for publication. The original research presented in the article presents the findings from a systematic analysis of themes in the epidemiological and social science literatures from the West Africa Ebola epidemic, ultimately examining in close detail over 400 articles from both literatures for points of convergence and divergence that had direct and indirect implications for how the West Africa EVD response was carried out. However, the article is not just retrospective – it is future-oriented in its analysis and conclusions. The Findings from the article are closely tied to the presentation of a policy and research agenda meant to address the critical epidemic research and response gaps that are widely recognized throughout international epidemic response audiences; with particular releveance for WHO priority diseases. The article is specifically targeted toward JID’s audience of medical, epidemiological, and health science researchers and practitioners. The subject of this article is distinctly interdisciplinary, using rigorous analytical methods to analyse the thematic priorities of epidemiological and social science research conducted during the West Africa Ebola epidemic. 

The manuscript has not been submitted or accepted for publication elsewhere.



All authors have seen and approved the content and have contributed significantly to the work.



Please find below a list of suggested reviewers.

Yours truly, Sharon Abramowitz

SUGGESTED REVIEWERS Glenn Laverack [email protected] Jamie Bedson [email protected] Annie Wilkinson [email protected] Russell Glasgow [email protected] Jonathan Suk [email protected]

Juliet Bedford [email protected] Daniel de Vries [email protected] Eugene Richardson [email protected]

Response to Reviewers

Click here to access/download;Response to Editor/Reviewer Comments;JID Response letter 12Jun18.docx

Dear Editor and Reviewers, We respectfully resubmit our article “LESSONS FROM THE WEST AFRICA EBOLA EPIDEMIC: A SYSTEMATIC REVIEW OF EPIDEMIOLOGICAL AND SOCIAL AND BEHAVIORAL SCIENCE RESEARCH PRIORITIES” in both clean and “changes-highlighted” format. All major revisions are noted in the comments below. We note the salience of our paper in the context of the current Ebola outbreak affecting the Democratic Republic of the Congo, and suggest that the journal considers fast-tracking its publication if the reviewers give a favorable response to the changes made. Minor changes to the text were made to accommodate the journal’s word limit in the context of changes made based on the reviewers’ suggestions. These changes are not highlighted in the “changes-highlighted” version. While the word count is slightly in excess of 3,500, this is due to captions for tables and text boxes, which should be excluded from the word count. Finally, if the journal allows it, we would like to list both of us as corresponding authors for the paper and have included this on the manuscript. This has the approval of all co-authors. Best regards, Sharon Abramowitz and David Hipgrave

Reviewers' Comments: Reviewer #1: Abramowitz and coworkers have provided a systematic literature review comparing the epidemiological (EPI) research and social and behavioral science (SBS) research published during the West Africa Ebola outbreak. This is an important study and has far-reaching implications for dealing with future infectious disease outbreaks in real-time. A major comment is that the article would benefit by a more quantitative discussion of the data in the paper, particularly of Tables 2 and 3. We thank the reviewer for this suggestion. It is difficult to be more precise with respect to the data in Table 2, due to the very imprecise information provided by many of the papers reviewed. The text has been slightly adapted to reflect this for the timing of the research, and the table itself has been altered slightly to reduce the precision implied by the naming of countries in the location column. This precision was absent in many cases. With respect to table 3, there are ~730 words of “description” of the themes in the Results section describing the focus of the literature in the two datasets. We have added percentages for the

different article themes within this text to make it more quantitative, and added text to comment on these comparative percentages. However, we acknowledge that these changes seem relatively minor. If the reviewer is still not satisfied, we would request them to kindly elaborate on how it can be further improved. There are other instances where a more direct qualitative discussion of the data obtained would be helpful. For example the authors write, " While the EPI literature drew upon broad population data to make general inferences without local insights, the SBS literature used tiny qualitative samples to make sweeping inferences not supported by the epidemiological data." How broad? How tiny? We have omitted the word “tiny”, which was overly dramatic, and made changes to the relevant text in the Discussion, first paragraph. Additional comments: 1. Ebolavirus disease (EVD) should be Ebola virus disease (EVD). This is apparently very complicated… see http://www.virology.ws/2012/08/07/is-it-ebolavirus-or-ebola-virus/ . We suggest leaving it up to the Journal editor, and provide this URL so the appropriate format can be used. However, to be fully open we note that the terminology we used during our literature search was ebolavirus (see Supplement, Table 1), and have not re-undertaken the search using “ebola virus”. 2. The authors write, "The West Africa outbreak prompted one of the largest and fastest mobilizations of epidemiological, clinical, scientific, and social and behavioral science (SBS) research in history..." The research response was large but it was not fast. Indeed, research efforts were delayed and clinical trials of treatments started only as the lengthy epidemic was waning. We note the reviewer’s next comment that certain types of research were initiated quickly – see next comment. We have avoided the issue by changing the text to: “The West Africa outbreak prompted a very large mobilization of epidemiological, clinical, scientific, and social and behavioral science (SBS) research.” 3. "Early data collection in West Africa was weak;(34)" This seems like an opinion and should at least be qualified as to the type of data. In fact, at least for some types of data this is not true. Early data on genomic sequencing and clinical characterizations were robust. As quoted, we provide a citation, which refers to a major review of the response to the epidemic. However, in acknowledgement of the reviewer’s good point, we have changed the text to: “Although genomic sequencing and clinical characterizations were conducted early and proved robust, reviewers of the global response found that early data collection in West Africa was weak (34)…”. 4. The authors should provide some justification for this statement: "Conventional wisdom holds that during the outbreak, aggressive campaigns of isolation, contact tracing, safe burial practice and social mobilization for behavior change reduced disease transmission". If these factors had no role, what is the evidence for the contrary?

The sentence quoted does not imply that the factors listed had no role and it was not our intent to suggest that they failed. Our point was simply that the evidence on the impact of these factors is scant because the right research was not undertaken, as explained in the next sentence. We have altered the relevant text slightly to better highlight this point. ======================= Reviewer #2: This is a fantastic paper. It is clear and well written. By carrying out a systematic review of both epidemiological and social science literature, and comparing them, it provides an unprecedented overview of the evidence generated during the outbreak and the way this evidence was used. My only substantial comment is that the recommendations could be better integrated into the discussion. Although the discussion makes some good points about the kinds of data that could be better integrated, and examples from other fields where they have been, the recommendations themselves are not discussed in detail. They will not be easy to achieve, and a criticism will be that there are institutional and disciplinary reasons why better integration hasn't happened to date, and simply that there are limits to what is possible and beneficial (e.g., the systematic quantification of locally appropriate sociocultural factors - there is a tension between what can be quantified, and therefore generalized, and what is locally specific) and it would be good to flag these, and suggest what could help overcome them. For each recommendation I would like to see really practical suggestions of a way forward, including some specific examples of how data could be integrated, which will anticipate criticism and convince skeptics. We are grateful to the reviewer for this suggestion and agree that the seven recommendations in the Box were not adequately aligned to the text in the Discussion. We have made three sets of changes accordingly. First, we have added some text and citations to provide relevant examples of the recommendations made. Second, we have used the phraseology of the Boxed text in the relevant paragraphs of the following Discussion, to better enable readers to know which recommendation is being considered. Third, we have added sentences addressing the tension noted by the reviewer, and suggestions on the way forward. On this point, we acknowledge that these suggestions may not be as “really practical” as desired – some are more aspirational in nature, but the perfect solution is probably not achievable. Finally, we have moved the Box down to immediately precede the paragraphs where the recommendations are considered. Please define the term 'risk segmentation' - it appears in the abstract and recommendations box, but is not explained in the text (there is discussion of 'risk buckets' but I think the definition needs to be clearer). We have added text in the paragraph beginning “Novel strategies” (lines 293-294) and replaced the term “risk buckets” with “risk segments”, with an explanatory qualifier. =====================

Manuscript_Marked

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Submission to Journal of Infectious Diseases Major Article: 3500 words, 50 references, 7 figures or tables Footnote page

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In reviewing the literature emanating from the 2014-2016 West Africa Ebola epidemic, we identified thematic differences in the epidemiological and social science approaches that may have impacted the response. We offer recommendations to improve coordinated, multi-disciplinary approaches to health emergencies.

TITLE: LESSONS FROM THE WEST AFRICA EBOLA EPIDEMIC: A SYSTEMATIC REVIEW OF EPIDEMIOLOGICAL AND SOCIAL AND BEHAVIORAL SCIENCE RESEARCH PRIORITIES ABSTRACT WORD COUNT 198 PAPER WORD COUNT:

AUTHORS: 1. Sharon A. Abramowitz Rutgers University 107 University Road, Apt 3 Brookline, MA 02445, USA +1 6175990191 [email protected] CORRESPONDING AUTHOR 2. David B. Hipgrave UNICEF, 3 UN Plaza, New York, 10017 NY, USA +1 2123267000 [email protected] CORRESPONDING AUTHOR

29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44

3. Alison Witchard, PhD School of Archaeology and Anthropology AD Hope Building 14 Australian National University Acton, ACT 0200 Australia +61 488297063 [email protected] 4. David L. Heymann London School of Hygiene and Tropical Medicine Keppel Street London WC1E 7HT +447919626171 [email protected]

MAIN IDEA SENTENCE: (40 words)

Conflicts of Interest: The opinions and perspectives expressed are those of the authors only, and do not reflect on the institutions with which they have affiliations. The authors report that they have no conflicts of interest. Key words: Epidemics, Pandemics, Health emergencies, Qualitative, Quantitative, Public health, Ebola Funding Statement: This research was funded by UNICEF New York. Acknowledgements: Our thanks go to Ben Althouse, Caitlin Rivers, Greig Arendt, and Jeffrey Vadala for their contributions to this work. Presentation at previous meetings: Abramowitz, Sharon. Friday Morning Seminar in Culture, Psychiatry and Global Health, “Anthropology in Epidemics (Especially Ebola): The Paradox of Relevance" March 31, 2017. Co-sponsored by the Department of Global Health and Social Medicine, Harvard Medical School.

1

66 67

ABSTRACT: [WORD COUNT 198]

68

This systematic literature review compared the epidemiological (EPI) research and the

69

qualitative social and behavioral science (SBS) research published during the West Africa Ebola

70

virus disease (EVD) epidemic. Beginning with an initial capture of over 2,000 articles, we

71

extracted 236 EPI and 171 SBS studies to examine how disciplinary priorities affected research

72

conducted during the EVD response, with implications for epidemic response effectiveness.

73

Building on this research, we set forth a roadmap for the closer integration of EPI and SBS research

74

in all aspects of epidemic preparedness and response that incorporates the lessons of the West

75

Africa EVD outbreak. Key priorities include: (1) developing the capacity to systematically

76

quantify qualitative sociocultural variables, (2) establishing interdisciplinary collaborations to

77

improve “risk segmentation” practices, (3) creating and pre-positioning qualitative indicators and

78

composite sociocultural indexes for rapid deployment in outbreaks; (4) integrating novel systems

79

with community resources; (5) developing new techniques for modeling social mobilization and

80

community engagement; (6) prioritizing good data and complex analyses early in emergencies,

81

and (7) learning from past experiences. Our findings support a program of action that situates data

82

collection and analysis in real-time, recursive, integrated efforts to move community attitudes,

83

behaviors, and responses into epidemiological research.

84

2

85

BACKGROUND

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The 2014-2016 West Africa Ebola virus disease (EVD) epidemic resulted in 28,616 cases

87

and 11,310 deaths in four countries (Guinea, Liberia, Sierra Leone and Nigeria). New vaccines

88

were developed, and in late 2016 the rVSV-ZEBOV vaccine was found protective against EVD

89

infection.[1] While vaccines may disrupt future EVD outbreaks, the West Africa outbreak was

90

eventually controlled by a combination of classic public health measures, including population

91

surveillance, case identification and management, aggressive contact tracing, isolation, quarantine

92

and mobility restrictions.[2] Social mobilization and local initiatives promoted behavior change

93

among affected populations, also contributing to epidemic containment.[3,4]

94

The West Africa outbreak prompted one of the largest and fastest mobilizations of

95

epidemiological, clinical, scientific, and social and behavioral science (SBS) research, but also

96

highlighted existing fault lines in knowledge-based response to disease outbreaks.

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Epidemiological models and forecasts and clinical treatment guidelines were unable to capture the

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complex socio-cultural conditions and fragile health systems prevailing in these countries.

99

Similarly, social and behavioral scientists were unable to translate their knowledge of local

100

conditions into epidemiologically-relevant insights. In particular, community-based behavior-

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changes were insufficiently integrated into epidemiological models and forecasts.[5]

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We used the West Africa EVD epidemic as an opportunity to assess the extent to which

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epidemiological (EPI) and SBS research efforts mutually provide the knowledge needed to

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respond to disease outbreaks. We conducted systematic reviews of the EPI and SBS research and

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analyzed the themes prioritized in both literatures, to identify how their respective thematic

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concerns converged or diverged. We use this analysis to highlight the need for more effective

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research collaboration and response during future infectious disease emergencies. This is central

3

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to the International Health Regulations’ prioritization of strengthening national response and

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capacity during epidemics.

110 111

METHODS

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We conducted two systematic literature reviews and a subsequent discourse-driven

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thematic analysis. The main objectives were to analyze the range of thematic topics addressed by

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the published EPI and SBS literature regarding the West Africa EVD outbreak; to identify thematic

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areas where the literatures converged or diverged; and to identify opportunities for future

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multidisciplinary collaboration to support real-time responses, based on knowledge acquired by

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pre-hoc or concurrent research efforts.

118 119

Data sources and search strategy

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For both reviews, our methodology was guided by the Cochrane Reviewer’s Handbook,[6]

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and involved a broad electronic and manual search of the English and French literatures (see

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supplementary data A).

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To obtain data for the EPI and SBS research sets, we conducted a standardized keyword

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search of most-frequently used research catalogues (Table 1). In both literatures, we prioritized

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studies with data originating from West Africa during the 2013-2016 epidemic. However, we

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modified our search strategy early on when we discovered that the ratio of EPI to SBS articles was

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more than ten to one.

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To capture the informal publication patterns of the SBS community, we complemented the

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primary SBS search with a manual inventory of non-peer-reviewed publications available through

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topic-specific websites and forthcoming peer-reviewed publications. This strategy was designed

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to compensate for SBS’s decreased access to data collection opportunities during the epidemic,

4

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low levels of research funding, and peripheral role in the research–policy-practice sequence that

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shaped the epidemic response.

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Table 1: Search strategy

135 136

Literature screening and catalogue construction

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Study selection used two levels of screening. At level one, abstracts were reviewed for the

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exclusion criteria (Table 1). Full articles were obtained for all studies accepted at this level. For

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level two screening, distinct inclusion and exclusion criteria were applied to the two literature sets

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and were formulated into search sentences (Supplementary Material A). For the EPI literature,

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studies needed to at least include primary collection or use of field-based data collected from any

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of the four countries affected. For the SBS literature, selected documents needed to demonstrate

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original social science analysis, and non-peer reviewed publications required authorship by

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scholars with current or former institutional affiliations with academic institutions, think tanks,

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non-profit development or humanitarian organizations.

146 147

Data extraction

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For documents included in the data extraction subset, content was reviewed using a

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systematic review process conducted independently by two authors (SA and AW). Researchers

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entered citations and abstracts into the qualitative data analysis software package MAXQDA

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Analytics Pro v12 (VERBI Software GmbH, Berlin) and cross-referenced abstracts with full-

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length, searchable files.

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Data extraction involved a five-step process.

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1. Independent review of full-text articles using a codebook of themes and sub-themes

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(developed by SA) based on a pre-screening of the data. New themes/codes and sub-themes

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were created as needed using inductive thematic coding.[7,8]

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2. The two reviewers first coded each document separately, and then merged their analyses

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and reconciled disagreements between the themes and sub-themes ascribed to each to

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establish a set of interim working themes and sub-themes. Attributed codes were not

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mutually exclusive, and documents were coded for multiple variables in the same category

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when necessary or appropriate. This approach allowed researchers to capture a wide range

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of themes, but it precluded conventional statistical comparison, single and multiple

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regression methods, and theme-based weighting.

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3. Text-based searches in data processing software captured matches that were previously missed. 4. Researchers reconciled codes and sub-code disagreements to finalize sub-themes. The

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themes presented are aggregates of sub-themes presented in Supplementary Material B.

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5. To obtain summary statistics of thematic codes, qualitative codes representing document

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counts were converted into binary variables which were analyzed for frequencies and

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percentages in MAXQDA and IBM SPSS Statistics Version 24.0.

171 172

RESULTS

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Data retrieval

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The initial literature review identified 2170 citations for screening. A preponderance (1572

175

articles) were rejected according to the exclusion criteria or could not be retrieved. The remaining

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598 articles were divided into EPI (n=387) and SBS (n=211) catalogues (Supplementary Material

6

177

C). A second review to ensure that exclusion criteria had been applied consistently resulted in the

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final inclusion of 236 EPI articles and 171 SBS articles (Figure 1).

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Figure 1: Data retrieval

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Study characteristics

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EPI and SBS articles differed in content. Among the 236 EPI articles, the four most

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common types were (1) modeling or forecasting studies, (2) epidemiological status reports, (3)

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intervention evaluations, or (4) commentaries that introduced novel data. Among the 171 SBS

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articles, the four most common types were (1) original qualitative research, (2)

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commentaries/discussion pieces, (3) ethnographic narratives, and (4) guidance documents.

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All studies were analyzed for research location and study period. Although the research

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often overlapped the epidemic “phases”, most EPI research and SBS writing was conducted during

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phase 1, the period of peak mortality in Sierra Leone and Liberia (Table 2). However, due to

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inconsistent reporting, it was difficult to precisely associate data sources with particular countries;

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due to imprecision in early EVD reports, many publications included data that were unclearly

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disaggregated by country.[9,10]

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Table 2: Sample size, location (mentioned as a focus or source of data) and timeframe of study

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Comparison of thematic areas identified by literature type

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The analysis identified a total of 29 composite thematic areas (Table 3); these are

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aggregates of the 327 sub-themes listed in Supplement A. Table 3 presents the number and

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percentage of articles within each data set that addressed the theme or sub-theme within each set.

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These findings are presented side-by-side, to illustrate how frequently each literature addressed

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key themes relevant to epidemic response. We interpret frequency to indicate disciplinary priorities

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during the epidemic, as well as researchers’ access to original and historical data.

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Table 3: Themes and ratios of themes in EVD publications by research type with shading to indicate greater

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proportion

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EPI articles prioritized more research on clinical and patient care (59%); diagnosis of EVD

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(42%), including sensitivity and specificity [46%]); transmission (75%), incidence, mortality, and

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characterizing local outbreaks (84%); modeling and forecasting EVD trends (50%), outbreak

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investigation (63%); and Ebola virology (23%). SBS articles also prioritized transmission (47%),

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but included other themes related to prevention and EVD response. These included: health

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communications (44%), social mobilization and community engagement (63%); alternative

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healthcare-seeking practices and traditional and informal healthcare providers (63%); economic

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issues; traditional and local beliefs; political issues (78%); funerary practices and burials (59%);

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population mobility (66%); healthcare workers (57%); psychosocial experiences around risk,

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mortality, and stigma (88%); and the challenges confronting EVD survivors (30%). They also

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included qualitative documentation on the risk factors affecting vulnerable populations (older

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persons, children, the disabled, pregnant women, and orphans [33%]). In each of these examples,

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the respective literature leaned, usually substantively, towards the themes listed.

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While epidemiology traditionally focuses on associations and outcomes, during the West

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Africa EVD epidemic the EPI literature often addressed access to beds, presence or absence of

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contact tracing measures, health worker utilization of protective gear and infection prevention and

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control practices. SBS studies were flagging factors like gender, social roles, vulnerabilities, access

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to healthcare, food insecurity, and mobility in July-September 2014, but these factors were not

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integrated into epidemiological analysis until later in the outbreak (approximately November-

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December 2014). This gap is likely due to epidemiologists’ poor access to such data, limited by

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on-the-ground data collection capabilities, and methodological differences in defining SBS

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variables for quantitative analysis. Whether due to a lack of access or resources, or low priority,

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SBS studies less frequently engaged with transmission (47% versus 75% for the EPI literature),

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clinical care (46% v 59%), and epidemiological concerns (13% v 84%) at scale, and did not assess

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incidence, reproduction rates or transmission chains, to inform response strategy and policy.

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The EPI and SBS literatures converged in commonly addressing themes related to public

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health response (76% and 85% respectively), health systems (74% and 75%), population mobility

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(53% and 66%) and risk factors (43% and 41%); there were also other less common themes of

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similar frequency across the two literature sets. However, the two catalogues dealt with some

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themes, like national capacity and health systems, in different ways. For example, on health

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systems, EPI studies focused on capacity gaps and needs for support,[11–13] while SBS studies

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focused on labor recruitment/retention and community confidence in government-run health

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services, including local perceptions of their morality and ethics before and during the

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epidemic.[14–16] SBS analyses also attempted to directly integrate historical underdevelopment,

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systemic injustices, patterns of structural and political violence and governmental malfeasance into

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their analyses.[17–19] Risk factors, like sex, also involved thematic splits. SBS literatures pointed

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to gender-specific transmission pathways,[4,20] while EPI studies emphasized gender similarities

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in infection and mortality rates.[21,22]

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Both literatures dealt seriously with public health sub-themes, but paid attention to very

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different issues related to the response. EPI studies tended to focus on its effectiveness, reach, and

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impact,[23–25] while SBS studies focused on inequality in public health capabilities,[26] the

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legacy of vertical health programs,[27] and the EVD response’s failure to understand existing

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structural gaps and public health capabilities.[28–30]

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Where the SBS and EPI literatures diverged, they diverged widely. While each frequently

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acknowledged similar core themes, they rarely integrated these concerns into their research designs

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or analysis. For example, EPI articles described cultural and behavioral influences informing

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funerary practices and community resistance, but struggled to integrate them into models.[31,32]

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Similarly, SBS literature often acknowledged clinical and epidemiological concerns like standards

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of care, sources of risk or transmission dynamics, but did not transform sociocultural factors into

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quantifiable observations, events or methods at the scale needed to inform the response.

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Furthermore, while the SBS literature often acknowledged clinical and epidemiological concerns

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like transmission pathways/dynamics, case time-to-reporting and treatment standards, it did not

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apply such insights during social-science-guided interventions. In several areas of common

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concern (misinformation about the epidemic, funerary practices and community engagement)

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quantitative approaches had difficulty integrating the qualitative depth of the SBS literature with

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the response needs.

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These divergences resulted in differing empirically-relevant conclusions. For example, EPI

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studies hypothesized that the disruption of health services may have impacted non-Ebola mortality;

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while the SBS literature contended that EPI studies may have failed to account for widespread,

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continued services by private, informal or traditional healthcare providers.

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DISCUSSION

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To ensure the rapid, effective, targeted, and locally sensitive allocation of epidemic

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containment measures along the prevention-response continuum, future epidemic events require

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better pre-positioning, collaboration, and real-time integration of epidemiological and social

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science capabilities. Some EPI research does not require a behavioral component; similarly, not

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all health-focused SBS research must be contextualized in local epidemiology. However, our

10

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review of the EPI and SBS literature on the West Africa EVD epidemic demonstrated that these

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two disciplines dealt with some core themes in very different ways, reducing their capacity to

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mutually augment the response. Post-EVD reviews have acknowledged that there is need to

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harmonize SBS and EPI research to inform global epidemic and pandemic preparedness and

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response capacities.[33,34] Efforts are underway, but SBS research remains associated with health

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communications (e.g. WHO’s Social Science Unit sits within the Health Communications

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Capacity Unit), and is not integrated in preparedness and response coordination during global

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health emergencies. Indeed, the approaches used by the two literatures often seemed diametrically

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opposed. While the EPI literature drew upon broad population data (e.g. density, age, sex, language

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group, socio-economic situation) to make general inferences without incorporating local insights

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(e.g. cultural practices, traditional structures, mobile phone penetration, population movements

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etc.). By contrast, the SBS literature used small samples to make sweeping inferences for which

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there was scant epidemiological data. For example, anthropological studies that used individual-

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level data (rather than historical analysis or literature reviews) included samples that ranged from

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less than ten key informants to >800 households; while studies presenting community-level data

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tended to include 1-3 communities. Such trends suggest the need for real-time research that

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includes larger SBS sample populations, more detailed and inclusive epidemiological data

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collection, including on SBS themes, and improved collaboration between both approaches.

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Are the two literatures irreconcilable, or are other methodological issues at work? The EPI

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literature’s different priorities suggest the difficulty of quantifying and incorporating sociocultural,

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historical, political and economic constructs in ways directly applicable to the epidemic context.

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At the same time, while SBS literature often acknowledged clinical and epidemiological concerns,

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it did not transform sociocultural factors into quantifiable observations or methods at the scale

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needed to inform the response.

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While recognizing that such approaches cannot be applied in all health emergencies, this

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study suggests that such disciplinary segregation creates missed opportunities in global health

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emergency and humanitarian response. Box 1 summarizes our recommendations to address this

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challenge; they are applicable to international as well as national response efforts.

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Box 1: Recommendations to build capacity for future EPI/SBS work in epidemic contexts

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Novel strategies are required to systematically quantify sociocultural factors for

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epidemiological purposes. To make SBS insights meaningful and actionable, researchers should

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document relevant sociocultural factors (risks [behaviors, beliefs, practices] that characterize

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certain communities [defined geographically or by other criteria]) to enable their (ideally

302

quantitative) integration into epidemiological models. We found that during the West Africa EVD

303

epidemic, data collection prioritized quantitative benchmarks like time-to-reporting, time-to-

304

clinic, or contact-tracing estimates, but ignored important SBS influences on these variables (for

305

example, informal social learning pathways; informal healthcare providers engaged in community

306

education or infection prevention; community-driven initiatives; cooperation between local

307

governments, healthcare workers and community leaders). Such influences undergirded recent

308

responses to influenza in China[35] which learned from SARS of the need for community-wide

309

approaches.

310

Lessons from other fields can guide this effort. In the financial sector, detailed historical

311

knowledge of sub-population groups has been successfully applied in risk modeling to allow

312

corporations to sub-divide or segment risk in more refined ways. Collaborations between the social

313

sciences and epidemiology can quantitatively define population “risk segments” (economic

314

groups; communities) that predict exposures, informing response design and implementation. This 12

315

approach pools individuals into homogeneous segments defined by historical tendency to perform

316

similarly, either incidentally or longitudinally. While initiated in HIV research,[37] and applied to

317

reduce harmful practices responsible for newborn tetanus [38] and kuru [39], this approach has

318

been little tested in global health or emergency response research. Often the risk has already been

319

identified by research into associations with disease incidence. Collaborations are needed to

320

underwrite more creative, historically and locally-aligned characterizations of risk (modeled or

321

observed) to support contextualized preparedness or response.

322

Lessons can also be taken from validated mental health approaches to quantifying

323

qualitative diagnostic observations. Sophisticated strategies support the transformation of patient

324

interviews into valid diagnostic scores,[40,41] including extensive controls for subjective,

325

linguistic and cultural elements, as needed in epidemic preparedness or response. In a similar

326

manner, epidemiologists and social scientists can collaboratively establish qualitative or semi-

327

quantitative indicators of epidemic progression or risk; community support, resistance or

328

engagement; social mobilization, and intervention effectiveness. This knowledge can be rapidly

329

utilized to develop responses using EPI approaches targeting disease spread but founded upon SBS

330

principles.

331

Sierra Leone anthropologist Paul Richards wrote: “It is striking how rapidly communities

332

learned to think like epidemiologists, and epidemiologists to think like communities”.[42]

333

Reductions in poliovirus transmission have been partly accredited to explicit community

334

engagement and ownership, linked to sanitation and hygiene and vaccination uptake.[43] SBS and

335

epidemiological researchers can collaborate to situate communities at the center of real-time,

336

rolling data collection to reflect disease transmission and response effectiveness. Rapid data

337

collection systems can be pre-positioned and integrated with psychosocial, knowledge-attitudes-

13

338

and-practice and intervention impact measures, and with measures of community engagement and

339

social mobilization.

340

These systems can enable international actors, states and other stakeholders to receive real-

341

time information and respond appropriately. Aggregate, or composite qualitative indices of risk,

342

social mobilization, community engagement, and response effectiveness can be pre-conceived and

343

validated for use in status updates. These methodologies are well established during successful

344

vaccination campaigns, which are known for their military precision and local support.[44] This

345

approach encourages use of untapped community resources and the integration of sociocultural

346

factors into epidemiological models.

347

There are consequences for failing to advance this agenda. The non-alignment of EPI and

348

SBS research during the West Africa Ebola epidemic means that questions about what transpired,

349

what worked and didn’t work, who was responsible and affected and how or whether the epidemic

350

curve was moved by the local and international response, will likely remain unanswered.

351

Conventional wisdom holds that during the outbreak, aggressive campaigns of isolation, contact

352

tracing, safe burial and social mobilization reduced disease transmission. But in our assessment,

353

the research evidence on the relationship between Ebola transmission, interventions and behavior

354

change is scant, indicating poor understanding of the relationship between sociocultural factors

355

and EVD transmission, and the impact of interventions on overall epidemic trajectories.[45,46]

356

Data quality and analysis is another vital issue in this regard. Although genomic sequencing

357

and clinical characterizations were conducted early and proved robust, reviewers of the global

358

response found that early case-reporting data in West Africa was weak;[33] accordingly, evidence

359

for the sociodemographic, geospatial and cultural correlates of transmission and prevention were

360

lacking. Where qualitative data was integrated into the response, concepts like “community

14

361

resistance” were insufficiently defined for inclusion in reports. More medical anthropology is

362

needed to characterize and quantify risks, particularly those with potential for widespread

363

population health impact.

364

Moreover, data collection is usually undertaken to keep authorities informed, but must also

365

be integrated into well-supported analytical and modeling capabilities within and beyond response

366

structures.[47–51] In both the West Africa EVD and global Zika outbreaks, mobile technologies

367

and grassroots surveillance became increasingly important for collecting large quantities of (often

368

unanalyzed) data. Data access restrictions that inhibited inter-disciplinary coordination were

369

problematic in West Africa; these must be lifted.[48]

370

There are limitations to our study. First, it was impossible to rely on primary data, so

371

research in both disciplines depended also on secondary data sources, ranging from external

372

datasets to informal qualitative reports. Many epidemiological models utilized the same

373

incomplete datasets (viral hemorrhagic fever databases, WHO Situation Reports, secondary

374

district and county-level data), and social science reports utilized small numbers of respondents or

375

secondary reports. Thematic homogeneity may be due to limited data access specific to this

376

epidemic. Second, due to the international sharing of several datasets on the epidemic, it was not

377

possible to control for kin relationships, with multiple publications describing the same or

378

overlapping sets of patients. Thus, a meta-analysis of this data is likely not possible. Several

379

important studies included in both libraries included numerous kin publications. Third, themes

380

were established using a grounded theory approach, subjected to a peer review process. However,

381

restricted funding made it impossible to undertake comprehensive, teams-based peer-review,

382

resulting in some overlap between themes and sub-themes. Finally, to ensure that publication bias

15

383

did not unduly restrict our review of the SBS literature, we included some SBS studies based on

384

limited data, historical analysis and non-peer-reviewed articles.

385

How did socio-political, economic, migration, and sociocultural trends impact EVD

386

transmission? How could a more sophisticated understanding of health systems capacity, behavior

387

change, human mobility, mass communications, political contexts, and social vulnerability have

388

impacted the speed and roll-out of epidemic response implementation? Regrettably, for an event

389

that put three countries in states of emergency for nearly two years and killed more than 11,000

390

people, we will never have answers to these questions that we didn’t know we had, due to failure

391

to design data collection, modeling, mixed EPI and SBS research and analysis accordingly.

392

Integration of SBS and epidemiological approaches is needed for ensuring future epidemic

393

response and building this capacity into health systems. Agile, linked qualitative and quantitative

394

data collection and analysis efforts must be developed and used to drive surveillance, forecasting,

395

policy, and resource prioritization. There are no informal networks, shortcuts or workarounds that

396

can substitute for overcoming capacity gaps that are currently causing the “missed connections”

397

and “blind sides” between the SBS and epidemiological domains.

398 399

16

400


401 Sources

EPI literature

SBS literature

PubMed Central

PubMed Central

JSTOR

JSTOR

SAGE Journals

SAGE Journals

Google Scholar

Google Scholar Manual search Targeted Websites*

Dates

1 Dec 2013-13 Nov 2016

1 Dec 2013-13 Nov 2016

Languages

English

English

French

French

Ebola hemorrhagic fever


Ebola

Ebola

Ebolavirus

Ebolavirus

EVD

EVD

Epidemiology

Qualitative

Terms**

Anthropology Survey Psychosocial Culture Sociocultural Social KAP Knowledge Attitudes Practices Customs Regional

West [Western] Africa


17

sources for

Liberia

Liberia

primary data

Guinea

Guinea

Nigeria

Nigeria

Sierra Leone

Sierra Leone

Reasons for

Abstracts without papers

exclusion

Meetings proceedings Letters or commentaries News reports and news reviews Animal or in vitro studies Training manuals Materials limited to tables, charts, and infographics Primary data sources outside of Liberia, Guinea, Sierra Leone, Nigeria

*The Health Communications Capacity Collaborative, the Ebola Response Anthropology Platform, and the Réseau Ouest Africain SHS Ebola **see SUPPLEMENTARY MATERIAL A for complete search string

402 403

18

404


RESEARCH LOCATION

EPI (N)

EPI (%)

SBS (N)

SBS (%)

Any location reported

226

96

134

78

Liberia

138

58

58

34

Guinea

105

44

41

24

Sierra Leone

133

56

58

34

Nigeria

21

9

5

3

Two or more countries

210

89

103

60

Other*

29

12

47

29

Any timeframe reported

172

73

98

57

Pre-response/Dec13-Jul14

77

33

12

7

Phase 1/Aug14-Dec14

137

58

74

43

Phase 2/Jan15-Jul15

64

27

35

20

Phase 3/Aug15-Jul16

17

7

10

6

STUDY PERIOD**

405

* Any study that included a country other than Liberia, Guinea, Nigeria, or Sierra Leone as part of its reference group

406

in addition to the core 4 countries (e.g. Democratic Republic of the Congo, Uganda)

407

** Phases are based on the United Nations Mission for Emergency Ebola Response, to provide uniformity across

408

countries

409

19

410


411

proportion

THEMES

EPI (n)

EPI%

SBS (n)

SBS %

Age groups/Vulnerable populations

43

18%

56

33%

Alternative health practices

85

36%

107

63%

140

59%

79

46%

Clinical trials

22

9%

21

12%

Community engagement

73

31%

108

63%

Diagnosis

98

42%

32

19%

Economic issues

23

10%

74

43%

199

84%

22

13%

Ethics

34

14%

69

40%

Funerals/Burials

73

31%

101

59%

Health communications strategies

37

16%

75

44%

Healthcare workers

87

37%

98

57%

174

74%

129

75%

History

49

21%

40

23%

Mobility

125

53%

113

66%

Modeling

117

50%

13

8%

Outbreak investigation

149

63%

50

29%

Political themes

42

18%

134

78%

Post-Ebola

74

31%

55

32%

Psychosocial

74

31%

150

88%

Public health response

180

76%

146

85%

Risk factors

102

43%

70

41%

30

13%

95

56%

Sensitivity/Specificity

108

46%

9

5%

Sociocultural themes

134

57%

168

98%

32

14%

52

30%

Transmission

177

75%

81

47%

Transportation

46

19%

41

24%

Virology

67

28%

10

6%

Clinical

Epidemiology themes

Health systems

Rumors, myths and misinformation

Survivors

412

20

413


414

1.

415 416

epidemiological purposes; 2.

417 418

Establish interdisciplinary collaborations to refine “risk segmentation” methodologies and practices for better real-world accuracy;

3.

419 420

Develop a program for the systematic quantification of locally-appropriate sociocultural factors for

Create and pre-position qualitative indicators and composite social indexes that can be rapidly deployed during epidemic outbreaks;

4.

421

Use untapped community resources to create real-time, rolling data collection and response integration capabilities;

422

5.

Develop new techniques for modeling social mobilization and community engagement;

423

6.

Prioritize accurate, high-quality data collection and rapid development of multiple modeling frameworks

424 425

early in the emergency response; 7.

Draw upon the experience of the West Africa Ebola outbreak of 2014-15.

426 427

21

428

References

429

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432

2.

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3.

Chowell G, Simonsen L, Viboud C, Kuang Y. Is West Africa Approaching a Catastrophic Phase

435

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436

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550

26

551 552 553 554

Supplementary Material A: Search Sentences

Epidemiology Search String

Anthropology Search String

Limiters:

English and French, 12/2013-11/2016

Search Sentences

((("hemorrhagic fever, ebola"[MeSH Terms] OR ("hemorrhagic"[All Fields] AND "fever"[All Fields] AND "ebola"[All Fields]) OR "ebola hemorrhagic fever"[All Fields] OR "ebola"[All Fields] OR "ebolavirus"[MeSH Terms] OR "ebolavirus"[All Fields]) OR EVD[All Fields] OR ("ebolavirus"[MeSH Terms] OR "ebolavirus"[All Fields])) AND ("epidemiology"[Subheading] OR "epidemiology"[All Fields] OR "epidemiology"[MeSH Terms])) AND (("africa, western"[MeSH Terms] OR ("africa"[All Fields] AND "western"[All Fields]) OR "western africa"[All Fields] OR ("west"[All Fields] AND "africa"[All Fields]) OR "west africa"[All Fields]) OR ("liberia"[MeSH Terms] OR "liberia"[All Fields]) OR ("sierra leone"[MeSH Terms] OR ("sierra"[All Fields] AND "leone"[All Fields]) OR "sierra leone"[All Fields]) OR ("guinea"[MeSH Terms] OR "guinea"[All Fields])) AND ("2013/12/01"[PDAT] : "2016/11/13"[PDAT])

("hemorrhagic fever, ebola"[MeSH Terms] OR ("hemorrhagic"[All Fields] AND "fever"[All Fields] AND "ebola"[All Fields]) OR "ebola hemorrhagic fever"[All Fields] OR "ebola"[All Fields] OR "ebolavirus"[MeSH Terms] OR "ebolavirus"[All Fields]) AND ("anthropology"[MeSH Terms] OR "anthropology"[All Fields])

555 556

27

Supplementary Material B: Thematic Codes and Sub-Codes

Age groups/vulnerable populations under 5s children youth disabled/disabilities orphans Alt health practices self-treatment midwives or traditional birth attendants HH-based caregivingcaretaking Private healers, traditional healers, herbalists local health-seeking behaviors pregnant/labor Clinical ETUs/ETCs/hospitals Community Care Centers (CCCs) EVD signs and symptoms patient care supportive care/fluid replacement intake/triage Treatments and therapies clinical outcomes readmission

Clinical trials compassionate use exemption convalescent plasma TKM-100802 (siRNA) VSV-EBOV, rVSV-ZEBOV Zmapp Favipiravir ChAd3-Zebov Brincidofavir clinical trials participation Community engagement acceptance community engagement community meetings community participation community response community surveillance political paramount chief or community leaders community events Diagnosis barriers to testing early detection Lab tests testing tech and laboratory resources mobile laboratories RT-PCR lack of training HCWs and protective equipment Economic impact homelessness/lose or abandon house remittances Money

food economic collapse no electricity no water no clothes no job no sanitation lose farm Epidemiology themes biomarkers case-fatality rate contact mixing patterns End of epidemic/epidemic tail epidemic waves incidence incubation period morbidity mortality co-morbidity/co-mortality evolutionary dynamics of virus lethality/risk of death mutations Viral immunoresistance/ herd immunity viral load Ethics mandate legitimacy research ethics human rights humanitarian ethics medical ethics public health ethics sovereignty

28

Funerals/burials funerary practices/burials/funerals attitudes towards death/burials cremation Health communications strategies megaphone/pub announcement/billboard television religion communication house visits theatre, dance, music SMS social media radio news reports diaspora western media/journalism Health systems accountability legislation surveillance capabilities access to information or lack of restricted access to healthcare non-Ebola health services non-Ebola health needs detailing of HSS weaknesses communications global health global health governance hotlines/call center HS finance infrastructure laboratories

Guinea health system Liberia health system Nigeria health system Sierra Leone health system pharmaceuticals preparedness training WASH History archeology of epidemics history of region history of epidemics history of Ebola Location of research Liberia Guinea Sierra Leone Nigeria Other Mobility reasons for mobility/social networks international travel/borders genomic tracing migration/immigration intensity of mobility remote communities urban/rural variables curfews/checkpoints/roadblocks/bylaws on strangers susceptible-exposed-infectiousresolved model - SEIR stochastic model forecasting models

epidemic models Other diseases addressed/compared Other disease comparisons sleeping sickness chikungunya influenza SARS polio all-cause mortality Marburg Virus HIV/AIDS anthrax black plague/Bubonic plague cholera hepatitis A, B, D, C, E Lassa fever malaria maternal mortality measles smallpox TB typhoid typhus yellow fever H1N1 dengue Outbreak investigation transmission chains transmission pathways human-non-human interaction environmental change source investigation Reproduction number super-spreader events Survival rate

29

time to reporting, isolation, treatment seeking

immunization concerns/vaccine hesitancy

Political themes language of emergency or language of war transparency, lack of transparency ETU as 'camp', camps threat of violence/violence political economy government distrust insecurity party politics geopolitics excombatants corruption crime intra community conflict lack of confidence in authorities exclusion elites Representations social structures and institutions IHR/PHEIC

Psychosocial grief, distress, mourning, loss fear dignity/dignified/respect denial ingenuity compassion/sympathy social support hysteria stigma mental disorders trauma resilience trust/mistrust Hiding behaviors psychosocial well-being blame anger

Post-Ebola future clinical future community capabilities, local ownership future surveillance future testing HSS (health systems strengthening)

Public health response rapid response slow response/failure coordination specific interventions expert authority/need for experts behavior change contact-tracing Global EVD Response need for HSS finance/finance authority/need for additional funds

Holding centers Isolation IPC Quarantine support Quarantine social mobilization no touch Research timeframe Pre-response/Dec13-Jul14 Phase 1/Aug14-Dec14 Phase 2/Jan15-Jul15 Phase 3/Aug15-Jul16 Risk factors sociodemographic risk factors risk factors – specific household PPE adherence and compliance early spread exposure to sick person PPE Protective factors spread through fluids Rumors, myths and misinformation money making Ebola is not real global misinformation stolen body parts state is poisoning people international poisoning people blood/stealing blood salt cure

30

biological testing in Afr. populations sanitizer or bleach circulated via text message bitter cola wells were poisoned cannibalism west is testing bioweapons Sample size of study 10,000+ 1000-9999 500-999 101-499 0-100 Sociocultural themes agriculture attitudes and beliefs beliefs about illness community resistance customs/traditions diversity within 'traditions' education/literacy local knowledge social groups/social relations sociality sodalities/secret societies/Poro/Sande wealth/poverty witchcraft/sorcery/retribution women/gender

work ancestors biosecurity/global health security blood framing humanitarian aid Images kinship/family labelling local language othering abandonment social networks or cluster disabled/disabilities GBV/sexual violence elders/elderly/older people postconflict religion or religious leaders

psychosocial needs of survivors representation of survivors survivor health and post-EVD syndrome survivor kits survivor reintegration Transmission nosocomial transmission community transmission use of testing in breaking zoonotic infection interrupting transmission infection duration hunting sexual transmission human-to-human hidden reservoirs animal reservoirs bush meat transmission from survivors

Sensitivity-specificity missing cases, underreporting, undercounting new case detection/case finding overcounting/overestimate similar diseases presentation new case detection Survivors transmission from survivors survivor service post-EVD stigma

Transportation transport systems bad roads force in use of transport informal transports how are patients transported distance transported conveyance of corpses ambulances

557

558

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15. 16.

17. 18.

19. 20.

21. 22.

23. 24. 25. 26. 27.

28.

29.

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Sheikh, S. Gidado, G. Poggensee, P. Nguku, A. Olayinka, C. Ohuabunwo, et al. "An Evaluation of Psychological Distress and Social Support of Survivors and Contacts of Ebola Virus Disease Infection and Their Relatives in Lagos, Nigeria: A Cross Sectional Study--2014." [In Eng]. BMC Public Health 15 (Aug 27 2015): 824. 124. Moran, Mary. "Missing Bodies and Secret Funerals: The Production of "Safe and Dignified Burials" in the Liberian Ebola Crisis." Anthropology Quarterly (2016). 125. Moran, Mary, and Daniel Hoffman. "Ebola in Perspective." Cultural Anthropology 7 (2014). 126. Moulin, Anne Marie. "Anthropology and the Challenge of Ebola." Anthropologie et Santé 11 (2015). 127. Mühlberger, Elke, Deboleena Roy, Pamela Scully, Banu Subramaniam, and Jennifer Terry. "Ebola and Its Discontents." Catalyst: Feminism, Theory, Technoscience 1, no. 1 (2015). 128. Nading, Alex. "Ebola, Chimeras, and Unexpected Speculation." Limn 5 (2015). 129. Nam, Sara L, and Karl Blanchet. 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Social Science & Medicine 129 (2015): 78-86. 142. Park, Sung-Joon, and René Umlauf. "Caring as Existential Insecurity: Quarantine, Care, and Human Insecurity in the Ebola Crisis." Somatosphere, November 24 (2014). 143. Patterson, Donna A. "Ebola: Inequalities in Biomedical Capacity and International Response." Anthropologie et Santé 11 (2015). 144. Pellecchia, Umberto. "Do Traditions Spread Ebola?". Ebola Anthropology Response Platform (2015). 145. Pellecchia, Umberto, Rosa Crestani, Tom Decroo, Rafael Van den Bergh, and Yasmine Al-Kourdi. "Social Consequences of Ebola Containment Measures in Liberia." PloS one 10, no. 12 (2015): e0143036. 146. Perry, John, and T Debey Sayndee. Social Mobilization and the Ebola Virus Disease in Liberia. Rowman & Littlefield, 2016. 147. Pieterse, P., and T. Lodge. "When Free Healthcare Is Not Free. Corruption and Mistrust in Sierra Leone's Primary Healthcare System Immediately Prior to the Ebola Outbreak." [In Eng]. 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150. Pruyt, Erik, Willem L. Auping, and Jan H. Kwakkel. "Ebola in West Africa: Model-Based Exploration of Social Psychological Effects and Interventions: Ebola in West Africa." Systems Research and Behavioral Science 32, no. 1 (2015): 2-14. 151. Radin, Joanna. "Frozen by the Hot Zone." Limn 5 (2015). 152. Ramdass, Shekira. "The United States Interests in the Ebola Outbreak in West Africa." Virginia Review of Asian Studies 17 (2015): 221-45. 153. Ravi, S. J., and E. M. Gauldin. "Sociocultural Dimensions of the Ebola Virus Disease Outbreak in Liberia." [In Eng]. Biosecur Bioterror 12, no. 6 (Nov-Dec 2014): 301-5. 154. Redfield, P. "Medical Vulnerability, or Where There Is No Kit." Limn 5 (2015). 155. Reina-Ortiz, Miguel, Ismael Hoare, Vinita Sharma, and Ricardo Izurieta. "State of the Globe: Ebola Outbreak in the Western World: Are We Really Ready?". Journal of global infectious diseases 7, no. 2 (2015): 53. 156. Richards, Paul. 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Views for Four Villages on the Edge of the Gola Rain Forest National Park, Sierra Leone - Third Interim Report to the Smac Program, Dfid Freetown." Ebola Response Anthropology Platform: Njala University, 2015. 161. Richards, P., J. Amara, E. Mokuwa, A. Mokuwa, and R. Suluku. "Village Responses to Ebola Virus Disease in Rural Eastern Sierra Leone - Second Interim Report to the Smac Program, Dfid Freetown." Ebola Response Anthropology Platform: Njala University, 2015. 162. Richards, Paul, and James Fairhead. "Burial/Other Cultural Practices and Risk of Evd Transmission in the Mano River Region." Ebola Anthropology Response Platform (14/10/14 2014). 163. Richards, Paul, and A Mokuwa. "Village Funerals and the Spread of Ebola Virus Disease." Cultural Anthropology Online (2014). 164. Richards, Paul, and Esther Mokuwa. "Big Changes Found in Rural Communities in Ebola Awareness and Response." 165. Richards, P R Suluku, A Mokuwa, and J Amara. "Village Responses to Ebola Virus Disease in Rural Central Sierra Leone - an Interim Report to the Smac Program, Dfid Freetown." Ebola Response Anthropology Platform: Njala Univeristy, 2015. 166. Richardson, Eugene T, Mohamed Bailor Barrie, J Daniel Kelly, Yusupha Dibba, Songor Koedoyoma, and Paul E Farmer. "Biosocial Approaches to the 2013-2016 Ebola Pandemic." Health Hum Rights 18, no. 1 (2016): 115-28. 167. Rid, A., and E. J. Emanuel. "Ethical Considerations of Experimental Interventions in the Ebola Outbreak." The Lancet 384, no. 9957 (2014): 1896-99. 168. Risso-Gill, Isabelle, and Leah Finnegan. "Children's Ebola Recovery Assessment: Sierra Leone." Save the Children Fund, World Vision International, Plan International, UNICEF, 2015. 169. Rizkalla, Carol, Francisco Blanco-Silva, and Stephanie Gruver. "Modeling the Impact of Ebola and Bushmeat Hunting on Western Lowland Gorillas." EcoHealth 4, no. 2 (2007): 151-55. 170. Rohwerder, Brigitte. "Impact and Implications of the Ebola Crisis." (2014). 171. Rubyan-Ling, David. "Briefing Paper: Diaspora Communications and Health Seeking Behaviour in the Time of Ebola: Findings from the Sierra Leonean Community in London." In Ebola Response Anthropology Platform, 2015. 172. Saez, Almudena Mari, and Matthias Borchert. "Burial in Times of Ebola - Dos and Don't - Issues of Acceptability." Ebola Anthropology Response Platform (2014). 173. Saez, Almudena Mari, Ann Kelly, and Hannah Brown. "Notes from Case Zero: Anthropology in the Time of Ebola." Notes (2014). 174. Saéz, Almudena Marí, Sabrina Weiss, Kathrin Nowak, Vincent Lapeyre, Fee Zimmermann, Ariane Düx, Hjalmar S Kühl, et al. "Investigating the Zoonotic Origin of the West African Ebola Epidemic." EMBO molecular medicine 7, no. 1 (2015): 17-23. 175. Sayegh, Jackie. "Ebola and the Health Care Crisis in Liberia." Cultural Anthropology Website (2014). 176. Schroven, Anita. "Ebola in Guinea: Revealing the State of the State." Hot Spots, Cultural Anthropology website. October 7, 2014. Available from (2014). 177. Shepler, Susan. "'We Know Who Is Eating the Ebola Money!': Corruption, the State, and the Ebola Repsonse." Anthropology Quarterly (2017). 178. Shultz, James M, Benjamin M Althouse, Florence Baingana, Janice L Cooper, Maria Espinola, M Claire Greene, Zelde Espinel, et al. "Fear Factor: The Unseen Perils of the Ebola Outbreak." Bulletin of the Atomic Scientists 72, no. 5 (2016): 304-10.

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179. Shultz, James M, Janice L Cooper, Florence Baingana, Maria A Oquendo, Zelde Espinel, Benjamin M Althouse, Louis Herns Marcelin, et al. "The Role of Fear-Related Behaviors in the 2013–2016 West Africa Ebola Virus Disease Outbreak." Current psychiatry reports 18, no. 11 (2016): 104. 180. Sierra Leone Ministry of Social Welfare, Gender and Children's Affairs, UN Women Sierra Leone, OXFAM Sierra Leone, and Statistics Sierra Leone. "Report of the Multisector Impact Assessment of Gender Dimensions of the Ebola Virus Disease (Evd) in Sierra Leone." 2014. 181. Slaney, Evan. "Socratic Dialogue as a Framework for Understanding Activist Music During the Ebola Outbreak in Liberia." Nota Bene: Canadian Undergraduate Journal of Musicology 9, no. 1 (2016): 71. 182. Smith, Tara C. "Ebola as a Course: Uniting Basic Sciences, Public Health and the Humanities." Journal of Public Health (2015): fdv165. 183. Smout, E. "Communicating in a Crisis Like Ebola: Facts and Figures." SCiDevNet (2015). 184. 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Submission to Journal of Infectious Diseases Major Article: 3500 words, 50 references, 7 figures or tables Footnote page

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In reviewing the literature emanating from the 2014-2016 West Africa Ebola epidemic, we identified thematic differences in the epidemiological and social science approaches that may have impacted the response. We offer recommendations to improve coordinated, multi-disciplinary approaches to health emergencies.

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Key words: Epidemics, Pandemics, Health emergencies, Qualitative, Quantitative, Public health, Ebola

TITLE: LESSONS FROM THE WEST AFRICA EBOLA EPIDEMIC: A SYSTEMATIC REVIEW OF EPIDEMIOLOGICAL AND SOCIAL AND BEHAVIORAL SCIENCE RESEARCH PRIORITIES ABSTRACT WORD COUNT 198 PAPER WORD COUNT:

AUTHORS: 1. Sharon A. Abramowitz Rutgers University 107 University Road, Apt 3 Brookline, MA 02445, USA +1 6175990191 [email protected] CORRESPONDING AUTHOR 2. David B. Hipgrave UNICEF, 3 UN Plaza, New York, 10017 NY, USA +1 2123267000 [email protected] CORRESPONDING AUTHOR

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3. Alison Witchard, PhD School of Archaeology and Anthropology AD Hope Building 14 Australian National University Acton, ACT 0200 Australia +61 488297063 [email protected] 4. David L. Heymann London School of Hygiene and Tropical Medicine Keppel Street London WC1E 7HT +447919626171 [email protected]

Conflicts of Interest: The opinions and perspectives expressed are those of the authors only, and do not reflect on the institutions with which they have affiliations. The authors report that they have no conflicts of interest. MAIN IDEA SENTENCE: (40 words)

Funding Statement: This research was funded by UNICEF New York. Acknowledgements: Our thanks go to Ben Althouse, Caitlin Rivers, Greig Arendt, and Jeffrey Vadala for their contributions to this work. Presentation at previous meetings: Abramowitz, Sharon. Friday Morning Seminar in Culture, Psychiatry and Global Health, “Anthropology in Epidemics (Especially Ebola): The Paradox of Relevance" March 31, 2017. Co-sponsored by the Department of Global Health and Social Medicine, Harvard Medical School.

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ABSTRACT: [WORD COUNT 198]

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This systematic literature review compared the epidemiological (EPI) research and the

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qualitative social and behavioral science (SBS) research published during the West Africa Ebola

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virus disease (EVD) epidemic. Beginning with an initial capture of over 2,000 articles, we

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extracted 236 EPI and 171 SBS studies to examine how disciplinary priorities affected research

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conducted during the EVD response, with implications for epidemic response effectiveness.

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Building on this research, we set forth a roadmap for the closer integration of EPI and SBS research

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in all aspects of epidemic preparedness and response that incorporates the lessons of the West

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Africa EVD outbreak. Key priorities include: (1) developing the capacity to systematically

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quantify qualitative sociocultural variables, (2) establishing interdisciplinary collaborations to

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improve “risk segmentation” practices, (3) creating and pre-positioning qualitative indicators and

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composite sociocultural indexes for rapid deployment in outbreaks; (4) integrating novel systems

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with community resources; (5) developing new techniques for modeling social mobilization and

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community engagement; (6) prioritizing good data and complex analyses early in emergencies,

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and (7) learning from past experiences. Our findings support a program of action that situates data

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collection and analysis in real-time, recursive, integrated efforts to move community attitudes,

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behaviors, and responses into epidemiological research.

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BACKGROUND

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The 2014-2016 West Africa Ebola virus disease (EVD) epidemic resulted in 28,616 cases

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and 11,310 deaths in four countries (Guinea, Liberia, Sierra Leone and Nigeria). New vaccines

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were developed, and in late 2016 the rVSV-ZEBOV vaccine was found protective against EVD

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infection.[1] While vaccines may disrupt future EVD outbreaks, the West Africa outbreak was

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eventually controlled by a combination of classic public health measures, including population

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surveillance, case identification and management, aggressive contact tracing, isolation, quarantine

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and mobility restrictions.[2] Social mobilization and local initiatives promoted behavior change

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among affected populations, also contributing to epidemic containment.[3,4]

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The West Africa outbreak prompted one of the largest and fastest mobilizations of

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epidemiological, clinical, scientific, and social and behavioral science (SBS) research, but also

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highlighted existing fault lines in knowledge-based response to disease outbreaks.

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Epidemiological models and forecasts and clinical treatment guidelines were unable to capture the

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complex socio-cultural conditions and fragile health systems prevailing in these countries.

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Similarly, social and behavioral scientists were unable to translate their knowledge of local

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conditions into epidemiologically-relevant insights. In particular, community-based behavior-

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changes were insufficiently integrated into epidemiological models and forecasts.[5]

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We used the West Africa EVD epidemic as an opportunity to assess the extent to which

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epidemiological (EPI) and SBS research efforts mutually provide the knowledge needed to

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respond to disease outbreaks. We conducted systematic reviews of the EPI and SBS research and

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analyzed the themes prioritized in both literatures, to identify how their respective thematic

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concerns converged or diverged. We use this analysis to highlight the need for more effective

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research collaboration and response during future infectious disease emergencies. This is central

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to the International Health Regulations’ prioritization of strengthening national response and

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capacity during epidemics.

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METHODS

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We conducted two systematic literature reviews and a subsequent discourse-driven

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thematic analysis. The main objectives were to analyze the range of thematic topics addressed by

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the published EPI and SBS literature regarding the West Africa EVD outbreak; to identify thematic

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areas where the literatures converged or diverged; and to identify opportunities for future

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multidisciplinary collaboration to support real-time responses, based on knowledge acquired by

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pre-hoc or concurrent research efforts.

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Data sources and search strategy

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For both reviews, our methodology was guided by the Cochrane Reviewer’s Handbook,[6]

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and involved a broad electronic and manual search of the English and French literatures (see

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supplementary data A).

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To obtain data for the EPI and SBS research sets, we conducted a standardized keyword

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search of most-frequently used research catalogues (Table 1). In both literatures, we prioritized

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studies with data originating from West Africa during the 2013-2016 epidemic. However, we

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modified our search strategy early on when we discovered that the ratio of EPI to SBS articles was

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more than ten to one.

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To capture the informal publication patterns of the SBS community, we complemented the

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primary SBS search with a manual inventory of non-peer-reviewed publications available through

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topic-specific websites and forthcoming peer-reviewed publications. This strategy was designed

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to compensate for SBS’s decreased access to data collection opportunities during the epidemic,

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low levels of research funding, and peripheral role in the research–policy-practice sequence that

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shaped the epidemic response.

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Literature screening and catalogue construction

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Study selection used two levels of screening. At level one, abstracts were reviewed for the

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exclusion criteria (Table 1). Full articles were obtained for all studies accepted at this level. For

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level two screening, distinct inclusion and exclusion criteria were applied to the two literature sets

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and were formulated into search sentences (Supplementary Material A). For the EPI literature,

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studies needed to at least include primary collection or use of field-based data collected from any

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of the four countries affected. For the SBS literature, selected documents needed to demonstrate

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original social science analysis, and non-peer reviewed publications required authorship by

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scholars with current or former institutional affiliations with academic institutions, think tanks,

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non-profit development or humanitarian organizations.

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Data extraction

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For documents included in the data extraction subset, content was reviewed using a

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systematic review process conducted independently by two authors (SA and AW). Researchers

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entered citations and abstracts into the qualitative data analysis software package MAXQDA

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Analytics Pro v12 (VERBI Software GmbH, Berlin) and cross-referenced abstracts with full-

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length, searchable files.

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Data extraction involved a five-step process.

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1. Independent review of full-text articles using a codebook of themes and sub-themes

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(developed by SA) based on a pre-screening of the data. New themes/codes and sub-themes

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were created as needed using inductive thematic coding.[7,8]

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2. The two reviewers first coded each document separately, and then merged their analyses

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and reconciled disagreements between the themes and sub-themes ascribed to each to

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establish a set of interim working themes and sub-themes. Attributed codes were not

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mutually exclusive, and documents were coded for multiple variables in the same category

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when necessary or appropriate. This approach allowed researchers to capture a wide range

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of themes, but it precluded conventional statistical comparison, single and multiple

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regression methods, and theme-based weighting.

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3. Text-based searches in data processing software captured matches that were previously missed. 4. Researchers reconciled codes and sub-code disagreements to finalize sub-themes. The

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themes presented are aggregates of sub-themes presented in Supplementary Material B.

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5. To obtain summary statistics of thematic codes, qualitative codes representing document

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counts were converted into binary variables which were analyzed for frequencies and

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percentages in MAXQDA and IBM SPSS Statistics Version 24.0.

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RESULTS

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Data retrieval

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The initial literature review identified 2170 citations for screening. A preponderance (1572

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articles) were rejected according to the exclusion criteria or could not be retrieved. The remaining

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598 articles were divided into EPI (n=387) and SBS (n=211) catalogues (Supplementary Material

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C). A second review to ensure that exclusion criteria had been applied consistently resulted in the

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final inclusion of 236 EPI articles and 171 SBS articles (Figure 1).

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Figure 1: Data retrieval

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Study characteristics

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EPI and SBS articles differed in content. Among the 236 EPI articles, the four most

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common types were (1) modeling or forecasting studies, (2) epidemiological status reports, (3)

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intervention evaluations, or (4) commentaries that introduced novel data. Among the 171 SBS

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articles, the four most common types were (1) original qualitative research, (2)

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commentaries/discussion pieces, (3) ethnographic narratives, and (4) guidance documents.

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All studies were analyzed for research location and study period. Although the research

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often overlapped the epidemic “phases”, most EPI research and SBS writing was conducted during

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phase 1, the period of peak mortality in Sierra Leone and Liberia (Table 2). However, due to

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inconsistent reporting, it was difficult to precisely associate data sources with particular countries;

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due to imprecision in early EVD reports, many publications included data that were unclearly

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disaggregated by country.[9,10]

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Comparison of thematic areas identified by literature type

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The analysis identified a total of 29 composite thematic areas (Table 3); these are

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aggregates of the 327 sub-themes listed in Supplement A. Table 3 presents the number and

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percentage of articles within each data set that addressed the theme or sub-theme within each set.

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These findings are presented side-by-side, to illustrate how frequently each literature addressed

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key themes relevant to epidemic response. We interpret frequency to indicate disciplinary priorities

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during the epidemic, as well as researchers’ access to original and historical data.

7

200


201

proportion

202

EPI articles prioritized more research on clinical and patient care (59%); diagnosis of EVD

203

(42%), including sensitivity and specificity [46%]); transmission (75%), incidence, mortality, and

204

characterizing local outbreaks (84%); modeling and forecasting EVD trends (50%), outbreak

205

investigation (63%); and Ebola virology (23%). SBS articles also prioritized transmission (47%),

206

but included other themes related to prevention and EVD response. These included: health

207

communications (44%), social mobilization and community engagement (63%); alternative

208

healthcare-seeking practices and traditional and informal healthcare providers (63%); economic

209

issues; traditional and local beliefs; political issues (78%); funerary practices and burials (59%);

210

population mobility (66%); healthcare workers (57%); psychosocial experiences around risk,

211

mortality, and stigma (88%); and the challenges confronting EVD survivors (30%). They also

212

included qualitative documentation on the risk factors affecting vulnerable populations (older

213

persons, children, the disabled, pregnant women, and orphans [33%]). In each of these examples,

214

the respective literature leaned, usually substantively, towards the themes listed.

215

While epidemiology traditionally focuses on associations and outcomes, during the West

216

Africa EVD epidemic the EPI literature often addressed access to beds, presence or absence of

217

contact tracing measures, health worker utilization of protective gear and infection prevention and

218

control practices. SBS studies were flagging factors like gender, social roles, vulnerabilities, access

219

to healthcare, food insecurity, and mobility in July-September 2014, but these factors were not

220

integrated into epidemiological analysis until later in the outbreak (approximately November-

221

December 2014). This gap is likely due to epidemiologists’ poor access to such data, limited by

222

on-the-ground data collection capabilities, and methodological differences in defining SBS

8

223

variables for quantitative analysis. Whether due to a lack of access or resources, or low priority,

224

SBS studies less frequently engaged with transmission (47% versus 75% for the EPI literature),

225

clinical care (46% v 59%), and epidemiological concerns (13% v 84%) at scale, and did not assess

226

incidence, reproduction rates or transmission chains, to inform response strategy and policy.

227

The EPI and SBS literatures converged in commonly addressing themes related to public

228

health response (76% and 85% respectively), health systems (74% and 75%), population mobility

229

(53% and 66%) and risk factors (43% and 41%); there were also other less common themes of

230

similar frequency across the two literature sets. However, the two catalogues dealt with some

231

themes, like national capacity and health systems, in different ways. For example, on health

232

systems, EPI studies focused on capacity gaps and needs for support,[11–13] while SBS studies

233

focused on labor recruitment/retention and community confidence in government-run health

234

services, including local perceptions of their morality and ethics before and during the

235

epidemic.[14–16] SBS analyses also attempted to directly integrate historical underdevelopment,

236

systemic injustices, patterns of structural and political violence and governmental malfeasance into

237

their analyses.[17–19] Risk factors, like sex, also involved thematic splits. SBS literatures pointed

238

to gender-specific transmission pathways,[4,20] while EPI studies emphasized gender similarities

239

in infection and mortality rates.[21,22]

240

Both literatures dealt seriously with public health sub-themes, but paid attention to very

241

different issues related to the response. EPI studies tended to focus on its effectiveness, reach, and

242

impact,[23–25] while SBS studies focused on inequality in public health capabilities,[26] the

243

legacy of vertical health programs,[27] and the EVD response’s failure to understand existing

244

structural gaps and public health capabilities.[28–30]

9

245

Where the SBS and EPI literatures diverged, they diverged widely. While each frequently

246

acknowledged similar core themes, they rarely integrated these concerns into their research designs

247

or analysis. For example, EPI articles described cultural and behavioral influences informing

248

funerary practices and community resistance, but struggled to integrate them into models.[31,32]

249

Similarly, SBS literature often acknowledged clinical and epidemiological concerns like standards

250

of care, sources of risk or transmission dynamics, but did not transform sociocultural factors into

251

quantifiable observations, events or methods at the scale needed to inform the response.

252

Furthermore, while the SBS literature often acknowledged clinical and epidemiological concerns

253

like transmission pathways/dynamics, case time-to-reporting and treatment standards, it did not

254

apply such insights during social-science-guided interventions. In several areas of common

255

concern (misinformation about the epidemic, funerary practices and community engagement)

256

quantitative approaches had difficulty integrating the qualitative depth of the SBS literature with

257

the response needs.

258

These divergences resulted in differing empirically-relevant conclusions. For example, EPI

259

studies hypothesized that the disruption of health services may have impacted non-Ebola mortality;

260

while the SBS literature contended that EPI studies may have failed to account for widespread,

261

continued services by private, informal or traditional healthcare providers.

262 263

DISCUSSION

264

To ensure the rapid, effective, targeted, and locally sensitive allocation of epidemic

265

containment measures along the prevention-response continuum, future epidemic events require

266

better pre-positioning, collaboration, and real-time integration of epidemiological and social

267

science capabilities. Some EPI research does not require a behavioral component; similarly, not

268

all health-focused SBS research must be contextualized in local epidemiology. However, our

10

269

review of the EPI and SBS literature on the West Africa EVD epidemic demonstrated that these

270

two disciplines dealt with some core themes in very different ways, reducing their capacity to

271

mutually augment the response. Post-EVD reviews have acknowledged that there is need to

272

harmonize SBS and EPI research to inform global epidemic and pandemic preparedness and

273

response capacities.[33,34] Efforts are underway, but SBS research remains associated with health

274

communications (e.g. WHO’s Social Science Unit sits within the Health Communications

275

Capacity Unit), and is not integrated in preparedness and response coordination during global

276

health emergencies. Indeed, the approaches used by the two literatures often seemed diametrically

277

opposed. While the EPI literature drew upon broad population data (e.g. density, age, sex, language

278

group, socio-economic situation) to make general inferences without incorporating local insights

279

(e.g. cultural practices, traditional structures, mobile phone penetration, population movements

280

etc.). By contrast, the SBS literature used small samples to make sweeping inferences for which

281

there was scant epidemiological data. For example, anthropological studies that used individual-

282

level data (rather than historical analysis or literature reviews) included samples that ranged from

283

less than ten key informants to >800 households; while studies presenting community-level data

284

tended to include a small sample of communities (n=1-5). Such trends suggest the need for real-

285

time research that includes larger SBS sample populations, more detailed and inclusive

286

epidemiological data collection, including on SBS themes, and improved collaboration between

287

both approaches.

288

Are the two literatures irreconcilable, or are other methodological issues at work? The EPI

289

literature’s different priorities suggest the difficulty of quantifying and incorporating sociocultural,

290

historical, political and economic constructs in ways directly applicable to the epidemic context.

291

At the same time, while SBS literature often acknowledged clinical and epidemiological concerns,

11

292

it did not transform sociocultural factors into quantifiable observations or methods at the scale

293

needed to inform the response.

294

While recognizing that such approaches cannot be applied in all health emergencies, this

295

study suggests that such disciplinary segregation creates missed opportunities in global health

296

emergency and humanitarian response. Box 1 summarizes our recommendations to address this

297

challenge; they are applicable to international as well as national response efforts.

298


299

Novel strategies are required to systematically quantify sociocultural factors for

300

epidemiological purposes. To make SBS insights meaningful and actionable, researchers should

301

document relevant sociocultural factors (risks [behaviors, beliefs, practices] that characterize

302

certain communities [defined geographically or by other criteria]) to enable their (ideally

303

quantitative) integration into epidemiological models. We found that during the West Africa EVD

304

epidemic, data collection prioritized quantitative benchmarks like time-to-reporting, time-to-

305

clinic, or contact-tracing estimates, but ignored important SBS influences on these variables (for

306

example, informal social learning pathways; informal healthcare providers engaged in community

307

education or infection prevention; community-driven initiatives; cooperation between local

308

governments, healthcare workers and community leaders). Such influences undergirded recent

309

responses to influenza in China[35] which learned from SARS of the need for community-wide

310

approaches.

311

Lessons from other fields can guide this effort. In the financial sector, detailed historical

312

knowledge of sub-population groups has been successfully applied in risk modeling to allow

313

corporations to sub-divide or segment risk in more refined ways. Collaborations between the social

314

sciences and epidemiology can quantitatively define population “risk segments” (economic

315

groups; communities) that predict exposures, informing response design and implementation. This 12

316

approach pools individuals into homogeneous segments defined by historical tendency to perform

317

similarly, either incidentally or longitudinally. While initiated in HIV research,[37] and applied to

318

reduce harmful practices responsible for newborn tetanus [38] and kuru [39], this approach has

319

been little tested in global health or emergency response research. Often the risk has already been

320

identified by research into associations with disease incidence. Collaborations are needed to

321

underwrite more creative, historically and locally-aligned characterizations of risk (modeled or

322

observed) to support contextualized preparedness or response.

323

Lessons can also be taken from validated mental health approaches to quantifying

324

qualitative diagnostic observations. Sophisticated strategies support the transformation of patient

325

interviews into valid diagnostic scores,[40,41] including extensive controls for subjective,

326

linguistic and cultural elements, as needed in epidemic preparedness or response. In a similar

327

manner, epidemiologists and social scientists can collaboratively establish qualitative or semi-

328

quantitative indicators of epidemic progression or risk; community support, resistance or

329

engagement; social mobilization, and intervention effectiveness. This knowledge can be rapidly

330

utilized to develop responses using EPI approaches targeting disease spread but founded upon SBS

331

principles.

332

Sierra Leone anthropologist Paul Richards wrote: “It is striking how rapidly communities

333

learned to think like epidemiologists, and epidemiologists to think like communities”.[42]

334

Reductions in poliovirus transmission have been partly accredited to explicit community

335

engagement and ownership, linked to sanitation and hygiene and vaccination uptake.[43] SBS and

336

epidemiological researchers can collaborate to situate communities at the center of real-time,

337

rolling data collection to reflect disease transmission and response effectiveness. Rapid data

338

collection systems can be pre-positioned and integrated with psychosocial, knowledge-attitudes-

13

339

and-practice and intervention impact measures, and with measures of community engagement and

340

social mobilization.

341

These systems can enable international actors, states and other stakeholders to receive real-

342

time information and respond appropriately. Aggregate, or composite qualitative indices of risk,

343

social mobilization, community engagement, and response effectiveness can be pre-conceived and

344

validated for use in status updates. These methodologies are well established during successful

345

vaccination campaigns, which are known for their military precision and local support.[44] This

346

approach encourages use of untapped community resources and the integration of sociocultural

347

factors into epidemiological models.

348

There are consequences for failing to advance this agenda. The non-alignment of EPI and

349

SBS research during the West Africa Ebola epidemic means that questions about what transpired,

350

what worked and didn’t work, who was responsible and affected and how or whether the epidemic

351

curve was moved by the local and international response, will likely remain unanswered.

352

Conventional wisdom holds that during the outbreak, aggressive campaigns of isolation, contact

353

tracing, safe burial and social mobilization reduced disease transmission. But in our assessment,

354

the research evidence on the relationship between Ebola transmission, interventions and behavior

355

change is scant, indicating poor understanding of the relationship between sociocultural factors

356

and EVD transmission, and the impact of interventions on overall epidemic trajectories.[45,46]

357

Data quality and analysis is another vital issue in this regard. Although genomic sequencing

358

and clinical characterizations were conducted early and proved robust, reviewers of the global

359

response found that early case-reporting data in West Africa was weak;[33] accordingly, evidence

360

for the sociodemographic, geospatial and cultural correlates of transmission and prevention were

361

lacking. Where qualitative data was integrated into the response, concepts like “community

14

362

resistance” were insufficiently defined for inclusion in reports. More medical anthropology is

363

needed to characterize and quantify risks, particularly those with potential for widespread

364

population health impact.

365

Moreover, data collection is usually undertaken to keep authorities informed, but must also

366

be integrated into well-supported analytical and modeling capabilities within and beyond response

367

structures.[47–51] In both the West Africa EVD and global Zika outbreaks, mobile technologies

368

and grassroots surveillance became increasingly important for collecting large quantities of (often

369

unanalyzed) data. Data access restrictions that inhibited inter-disciplinary coordination were

370

problematic in West Africa; these must be lifted.[48]

371

There are limitations to our study. First, it was impossible to rely on primary data, so

372

research in both disciplines depended also on secondary data sources, ranging from external

373

datasets to informal qualitative reports. Many epidemiological models utilized the same

374

incomplete datasets (viral hemorrhagic fever databases, WHO Situation Reports, secondary

375

district and county-level data), and social science reports utilized small numbers of respondents or

376

secondary reports. Thematic homogeneity may be due to limited data access specific to this

377

epidemic. Second, due to the international sharing of several datasets on the epidemic, it was not

378

possible to control for kin relationships, with multiple publications describing the same or

379

overlapping sets of patients. Thus, a meta-analysis of this data is likely not possible. Several

380

important studies included in both libraries included numerous kin publications. Third, themes

381

were established using a grounded theory approach, subjected to a peer review process. However,

382

restricted funding made it impossible to undertake comprehensive, teams-based peer-review,

383

resulting in some overlap between themes and sub-themes. Finally, to ensure that publication bias

15

384

did not unduly restrict our review of the SBS literature, we included some SBS studies based on

385

limited data, historical analysis and non-peer-reviewed articles.

386

How did socio-political, economic, migration, and sociocultural trends impact EVD

387

transmission? How could a more sophisticated understanding of health systems capacity, behavior

388

change, human mobility, mass communications, political contexts, and social vulnerability have

389

impacted the speed and roll-out of epidemic response implementation? Regrettably, for an event

390

that put three countries in states of emergency for nearly two years and killed more than 11,000

391

people, we will never have answers to these questions that we didn’t know we had, due to failure

392

to design data collection, modeling, mixed EPI and SBS research and analysis accordingly.

393

Integration of SBS and epidemiological approaches is needed for ensuring future epidemic

394

response and building this capacity into health systems. Agile, linked qualitative and quantitative

395

data collection and analysis efforts must be developed and used to drive surveillance, forecasting,

396

policy, and resource prioritization. There are no informal networks, shortcuts or workarounds that

397

can substitute for overcoming capacity gaps that are currently causing the “missed connections”

398

and “blind sides” between the SBS and epidemiological domains.

399 400

16

401


402 Sources

EPI literature

SBS literature

PubMed Central

PubMed Central

JSTOR

JSTOR

SAGE Journals

SAGE Journals

Google Scholar


Dates

1 Dec 2013-13 Nov 2016

1 Dec 2013-13 Nov 2016

Languages

English

English

French

French



Ebola

Ebola

Ebolavirus

Ebolavirus

EVD

EVD

Epidemiology

Qualitative

Terms**




17

sources for

Liberia

Liberia

primary data

Guinea

Guinea

Nigeria

Nigeria

Sierra Leone

Sierra Leone

Reasons for


exclusion



403 404

18

405


RESEARCH LOCATION

EPI (N)

EPI (%)

SBS (N)

SBS (%)


226

96

134

78

Liberia

138

58

58

34

Guinea

105

44

41

24

Sierra Leone

133

56

58

34

Nigeria

21

9

5

3


210

89

103

60

Other*

29

12

47

29


172

73

98

57


77

33

12

7

Phase 1/Aug14-Dec14

137

58

74

43

Phase 2/Jan15-Jul15

64

27

35

20

Phase 3/Aug15-Jul16

17

7

10

6

STUDY PERIOD**

406

* Any study that included a country other than Liberia, Guinea, Nigeria, or Sierra Leone as part of its reference group

407

in addition to the core 4 countries (e.g. Democratic Republic of the Congo, Uganda)

408

** Phases are based on the United Nations Mission for Emergency Ebola Response, to provide uniformity across

409

countries

410

19

411


412

proportion

THEMES

EPI (n)

EPI%

SBS (n)

SBS %


43

18%

56

33%


85

36%

107

63%

140

59%

79

46%

Clinical trials

22

9%

21

12%


73

31%

108

63%

Diagnosis

98

42%

32

19%

Economic issues

23

10%

74

43%

199

84%

22

13%

Ethics

34

14%

69

40%

Funerals/Burials

73

31%

101

59%


37

16%

75

44%

Healthcare workers

87

37%

98

57%

174

74%

129

75%

History

49

21%

40

23%

Mobility

125

53%

113

66%

Modeling

117

50%

13

8%


149

63%

50

29%

Political themes

42

18%

134

78%

Post-Ebola

74

31%

55

32%

Psychosocial

74

31%

150

88%


180

76%

146

85%

Risk factors

102

43%

70

41%

30

13%

95

56%


108

46%

9

5%


134

57%

168

98%

32

14%

52

30%

Transmission

177

75%

81

47%

Transportation

46

19%

41

24%

Virology

67

28%

10

6%

Clinical

Epidemiology themes

Health systems


Survivors

413

20

414


415

1.

416 417

epidemiological purposes; 2.

418 419


3.

420 421

Develop a program for the systematic quantification of locally-appropriate sociocultural factors for


4.

422


423

5.


424

6.

Prioritize accurate, high-quality data collection and rapid development of multiple modeling frameworks

425 426

early in the emergency response; 7.


427 428

21

429

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430

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537

45.

538 539

economy. PLOS Negl Trop Dis. 2014/08/01. 2014; 8(7):e3056. 46.

540 541

47.

48.

49.

550

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50.

548 549

Asgary R, Pavlin JA, Ripp JA, Reithinger R, Polyak CS. Ebola policies that hinder epidemic response by limiting scientific discourse. Am J Trop Med Hyg. 2015/01/07. 2015; 92(2):240–241.

546 547

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544 545

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542 543

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551

26

552 553 554 555

Supplementary Material A: Search Sentences

Epidemiology Search String

Anthropology Search String

Limiters:


Search Sentences



556 557

27

Supplementary Material B: Thematic Codes and Sub-Codes

Age groups/vulnerable populations under 5s children youth disabled/disabilities orphans Alt health practices self-treatment midwives or traditional birth attendants HH-based caregivingcaretaking Private healers, traditional healers, herbalists local health-seeking behaviors pregnant/labor Clinical ETUs/ETCs/hospitals Community Care Centers (CCCs) EVD signs and symptoms patient care supportive care/fluid replacement intake/triage Treatments and therapies clinical outcomes readmission

Clinical trials compassionate use exemption convalescent plasma TKM-100802 (siRNA) VSV-EBOV, rVSV-ZEBOV Zmapp Favipiravir ChAd3-Zebov Brincidofavir clinical trials participation Community engagement acceptance community engagement community meetings community participation community response community surveillance political paramount chief or community leaders community events Diagnosis barriers to testing early detection Lab tests testing tech and laboratory resources mobile laboratories RT-PCR lack of training HCWs and protective equipment Economic impact homelessness/lose or abandon house remittances Money

food economic collapse no electricity no water no clothes no job no sanitation lose farm Epidemiology themes biomarkers case-fatality rate contact mixing patterns End of epidemic/epidemic tail epidemic waves incidence incubation period morbidity mortality co-morbidity/co-mortality evolutionary dynamics of virus lethality/risk of death mutations Viral immunoresistance/ herd immunity viral load Ethics mandate legitimacy research ethics human rights humanitarian ethics medical ethics public health ethics sovereignty

28

Funerals/burials funerary practices/burials/funerals attitudes towards death/burials cremation Health communications strategies megaphone/pub announcement/billboard television religion communication house visits theatre, dance, music SMS social media radio news reports diaspora western media/journalism Health systems accountability legislation surveillance capabilities access to information or lack of restricted access to healthcare non-Ebola health services non-Ebola health needs detailing of HSS weaknesses communications global health global health governance hotlines/call center HS finance infrastructure laboratories

Guinea health system Liberia health system Nigeria health system Sierra Leone health system pharmaceuticals preparedness training WASH History archeology of epidemics history of region history of epidemics history of Ebola Location of research Liberia Guinea Sierra Leone Nigeria Other Mobility reasons for mobility/social networks international travel/borders genomic tracing migration/immigration intensity of mobility remote communities urban/rural variables curfews/checkpoints/roadblocks/bylaws on strangers susceptible-exposed-infectiousresolved model - SEIR stochastic model forecasting models

epidemic models Other diseases addressed/compared Other disease comparisons sleeping sickness chikungunya influenza SARS polio all-cause mortality Marburg Virus HIV/AIDS anthrax black plague/Bubonic plague cholera hepatitis A, B, D, C, E Lassa fever malaria maternal mortality measles smallpox TB typhoid typhus yellow fever H1N1 dengue Outbreak investigation transmission chains transmission pathways human-non-human interaction environmental change source investigation Reproduction number super-spreader events Survival rate

29

time to reporting, isolation, treatment seeking

immunization concerns/vaccine hesitancy

Political themes language of emergency or language of war transparency, lack of transparency ETU as 'camp', camps threat of violence/violence political economy government distrust insecurity party politics geopolitics excombatants corruption crime intra community conflict lack of confidence in authorities exclusion elites Representations social structures and institutions IHR/PHEIC

Psychosocial grief, distress, mourning, loss fear dignity/dignified/respect denial ingenuity compassion/sympathy social support hysteria stigma mental disorders trauma resilience trust/mistrust Hiding behaviors psychosocial well-being blame anger

Post-Ebola future clinical future community capabilities, local ownership future surveillance future testing HSS (health systems strengthening)

Public health response rapid response slow response/failure coordination specific interventions expert authority/need for experts behavior change contact-tracing Global EVD Response need for HSS finance/finance authority/need for additional funds

Holding centers Isolation IPC Quarantine support Quarantine social mobilization no touch Research timeframe Pre-response/Dec13-Jul14 Phase 1/Aug14-Dec14 Phase 2/Jan15-Jul15 Phase 3/Aug15-Jul16 Risk factors sociodemographic risk factors risk factors – specific household PPE adherence and compliance early spread exposure to sick person PPE Protective factors spread through fluids Rumors, myths and misinformation money making Ebola is not real global misinformation stolen body parts state is poisoning people international poisoning people blood/stealing blood salt cure

30

biological testing in Afr. populations sanitizer or bleach circulated via text message bitter cola wells were poisoned cannibalism west is testing bioweapons Sample size of study 10,000+ 1000-9999 500-999 101-499 0-100 Sociocultural themes agriculture attitudes and beliefs beliefs about illness community resistance customs/traditions diversity within 'traditions' education/literacy local knowledge social groups/social relations sociality sodalities/secret societies/Poro/Sande wealth/poverty witchcraft/sorcery/retribution women/gender

work ancestors biosecurity/global health security blood framing humanitarian aid Images kinship/family labelling local language othering abandonment social networks or cluster disabled/disabilities GBV/sexual violence elders/elderly/older people postconflict religion or religious leaders

psychosocial needs of survivors representation of survivors survivor health and post-EVD syndrome survivor kits survivor reintegration Transmission nosocomial transmission community transmission use of testing in breaking zoonotic infection interrupting transmission infection duration hunting sexual transmission human-to-human hidden reservoirs animal reservoirs bush meat transmission from survivors

Sensitivity-specificity missing cases, underreporting, undercounting new case detection/case finding overcounting/overestimate similar diseases presentation new case detection Survivors transmission from survivors survivor service post-EVD stigma

Transportation transport systems bad roads force in use of transport informal transports how are patients transported distance transported conveyance of corpses ambulances

558

559

31

560 561 562 563 564 565 566 567 568 569 570 571 572 573 574 575 576 577 578 579 580 581 582 583 584 585 586 587 588 589 590 591 592 593 594 595 596 597 598 599 600 601 602 603 604 605 606 607 608 609 610 611 612 613 614 615 616 617 618 619

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15. 16.

17. 18.

19. 20.

21. 22.

23. 24. 25. 26. 27.

28.

29.


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179. Shultz, James M, Janice L Cooper, Florence Baingana, Maria A Oquendo, Zelde Espinel, Benjamin M Althouse, Louis Herns Marcelin, et al. "The Role of Fear-Related Behaviors in the 2013–2016 West Africa Ebola Virus Disease Outbreak." Current psychiatry reports 18, no. 11 (2016): 104. 180. Sierra Leone Ministry of Social Welfare, Gender and Children's Affairs, UN Women Sierra Leone, OXFAM Sierra Leone, and Statistics Sierra Leone. "Report of the Multisector Impact Assessment of Gender Dimensions of the Ebola Virus Disease (Evd) in Sierra Leone." 2014. 181. Slaney, Evan. "Socratic Dialogue as a Framework for Understanding Activist Music During the Ebola Outbreak in Liberia." Nota Bene: Canadian Undergraduate Journal of Musicology 9, no. 1 (2016): 71. 182. Smith, Tara C. "Ebola as a Course: Uniting Basic Sciences, Public Health and the Humanities." Journal of Public Health (2015): fdv165. 183. Smout, E. "Communicating in a Crisis Like Ebola: Facts and Figures." SCiDevNet (2015). 184. Söderström, Johanna. "Ebola and the Ex-Combatant Community." Fieldsights–Hot Spots, Cultural Anthropology Online (2014). 185. Sprecher, Armand. "Handle Survivors with Care." New England Journal of Medicine (2015). 186. Tambo, Ernest, Emmanuel Chidiebere Ugwu, and Jeane Yonkeu Ngogang. "Need of Surveillance Response Systems to Combat Ebola Outbreaks and Other Emerging Infectious Diseases in African Countries." Infectious diseases of poverty 3, no. 1 (2014): 1. 187. The Liberia Ministry of Health. "National Knowledge, Attitudes and Practices Study on Ebola Virus Disease." Monrovia Liberia, 2015. 188. Tucker, Boima. "Beats, Rhymes and Ebola." Cultural Anthropology Online, 7th October (2014). 189. UNICEF Programme Division. "20 Lessons Learned to Inform C4d Responses to Ebola Outbreaks, West Africa, 2014." UNICEF New York: UNICEF, 2014. 190. UNMEER, and Emergency Ebola Anthropology Initiative. "Regional Food Insecurity, Work Migration and Roadblocks - Key Considerations." United Nations Mission for Emergency Ebola Response (2014). 191. ———. "Mobilising Youth for Ebola Education: Sierre Leone and Liberia." United Nations Mission for Emergency Ebola Response (30/10/14 2014). 192. ———. "Sierra Leone: Gift Giving During Initial Community Consultations (for Cccs)." United Nations Mission for Emergency Ebola Response (28/10/2014 2014). 193. ———. "Liberia: Handling of Bodies and National Memorials - Key Considerations." United Nations Mission for Emergency Ebola Response (27/10/14 2014). 194. ———. "Resistance in Guinea - June 2015." United Nations Mission for Emergency Ebola Response (2015). 195. ———. "The Flow of Money at the Community Level." United Nations Mission for Emergency Ebola Response (2015). 196. UNMEER, Emergency Ebola Anthropology Initiative, and Patricia Omidian. "Brief on Attitudes Towards EbolaRelated Funerary Practices and Memorialization in Urban Liberia." United Nations Mission for Emergency Ebola Response (2014). 197. Vogel, Gretchen. "Are Bats Spreading Ebola across Sub-Saharan Africa?". Science 344, no. 6180 (2014): 140-40. 198. Vora, Neil M, Ray R Arthur, David L Swerdlow, and Frederick J Angulo. "Preparation of at-Risk West African Countries for Ebola." The Lancet 385, no. 9965 (2015): 329-30. 199. Walker, Naomi F, and Christopher JM Whitty. "Tackling Emerging Infections: Clinical and Public Health Lessons from the West African Ebola Virus Disease Outbreak, 2014–2015." Clinical Medicine 15, no. 5 (2015): 457-60. 200. Wesley, Patricia Jabbeh. "Liberia’s Ebola Epidemic: Did the Government Fall Asleep at the Wheel." Cultural Anthropology Online. 7th October (2014). 201. Whiteford, Linda. "Global Health, Medical Anthropology, and Social Marketing: Steps to the Ecology of Collaboration." Collegium antropologicum 39, no. 2 (2015). 202. Whiteford, Linda M, and Mika Kadono. "The Disease Detectives." General Anthropology 22, no. 2 (2015): 1-10. 203. Wigmore, Rosie. "Contextualising Ebola Rumours from a Political, Historical and Social Perspective to Understand People's Perceptions of Ebola and the Responses to It." Ebola Response Anthropology Platform (2015). 204. Wilkinson, A. "Ebola: Failures, Flashpoints and Focus." In http://steps-centre.org/2014/blog/ebola/, edited by STEPS centre, 2014. 205. ———. "Emerging Disease or Emerging Diagnosis? Socio-Technical Perspectives on Lassa Fever and Ebola in West Africa." Anthropology Quarterly (2017). 206. Wilkinson, Annie, and James Fairhead. "Comparison of Social Resistance to Ebola Response in Sierra Leone and Guinea Suggests Explanations Lie in Political Configurations Not Culture." Critical Public Health (2016): 1-14. 207. Wilkinson, Annie, and Melissa Leach. "Briefing: Ebola –Myths, Realities, and Structural Violence." African Affairs (2014): adu080. 208. Wilkinson, A, J Lipton, F Martineau, C Chandler, and Ebola Response Anthropology Platform. "Mobilising Informal Health Workers for the Ebola Response: Potential and Programme Considerations - Briefing Note." Ebola Anthropology Response Platform (22/10/14 2014). 209. Willer, Liz. "Ebola and the Cultural Influences." healthfig - environmental health case studies (28 October 2014). 210. Wolz, Anja. "Face to Face with Ebola—an Emergency Care Center in Sierra Leone." New England Journal of Medicine 371, no. 12 (2014): 1081-83

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1897 1898 1899 1900

211. Yakubu, Aminu, Morenike Oluwatoyin Folayan, Nasir Sani-Gwarzo, Patrick Nguku, Kristin Peterson, and Brandon Brown. "The Ebola Outbreak in Western Africa: Ethical Obligations for Care." Journal of medical ethics 42, no. 4 (2016): 209-10

54

Table 1 Table 1 Search strategy

Sources

EPI literature

SBS literature

PubMed Central

PubMed Central

JSTOR

JSTOR

SAGE Journals

SAGE Journals

Google Scholar


Dates

1 Dec 2013-13 Nov 2016

1 Dec 2013-13 Nov 2016

Languages

English

English

French

French



Ebola

Ebola

Ebolavirus

Ebolavirus

EVD

EVD

Epidemiology

Qualitative

Terms**




sources for

Liberia

Liberia

primary data

Guinea

Guinea

Table 1 Search strategy

Nigeria

Nigeria

Sierra Leone

Sierra Leone

Reasons for


exclusion



Table 2 Table 2: Sample size, location and timeframe of study

RESEARCH LOCATION

EPI (N)

EPI (%)

SBS (N)

SBS (%)


226

96

134

78

Liberia

138

58

58

34

Guinea

105

44

41

24

Sierra Leone

133

56

58

34

Nigeria

21

9

5

3


210

89

103

60

Other*

29

12

47

29


172

73

98

57


77

33

12

7

Phase 1/Aug14-Dec14

137

58

74

43

Phase 2/Jan15-Jul15

64

27

35

20

Phase 3/Aug15-Jul16

17

7

10

6

STUDY PERIOD**

Table 3 Table 3: Themes and ratios of themes in EVD publications by research type with shading to indicate greater proportion

THEMES

EPI (n)

EPI%

SBS (n)

SBS %


43

18%

56

33%


85

36%

107

63%

140

59%

79

46%

Clinical trials

22

9%

21

12%


73

31%

108

63%

Diagnosis

98

42%

32

19%

Economic issues

23

10%

74

43%

199

84%

22

13%

Ethics

34

14%

69

40%

Funerals/Burials

73

31%

101

59%


37

16%

75

44%

Healthcare workers

87

37%

98

57%

174

74%

129

75%

History

49

21%

40

23%

Mobility

125

53%

113

66%

Modeling

117

50%

13

8%


149

63%

50

29%

Political themes

42

18%

134

78%

Post-Ebola

74

31%

55

32%

Psychosocial

74

31%

150

88%


180

76%

146

85%

Risk factors

102

43%

70

41%

30

13%

95

56%


108

46%

9

5%


134

57%

168

98%

32

14%

52

30%

Transmission

177

75%

81

47%

Transportation

46

19%

41

24%

Virology

67

28%

10

6%

Clinical

Epidemiology themes

Health systems


Survivors

Figure txt box

Click here to access/download;Figure;abramowitz_LESSONS_FROM_WA_E

Box 1: Recommendations to build capacity for future EPI/SBS work in epidemic contexts 1.

Develop a program for the systematic quantification of locally-appropriate sociocultural factors for epidemiological purposes;

2.


3.


4.


5.


6.

Prioritize accurate, high-quality data collection and rapid development of multiple modeling frameworks early in the emergency response;

7.


Figure 1

Click here to access/download;Figure;Hipgrave Figure 1 Data Retrieval.pdf

2170 articles retrieved 1572 meet exclusion criteria or are unable to be retrieved 598 studies retrieved (211 SBS, 387 EPI)

151 EPI studies meet exclusion criteria

40 SBS studies meet exclusion criteria

407 studies retrieved (171 SBS, 236 EPI)

236 EPI studies included

171 SBS studies included

1. 2. 3. 4. 5. 6. 7.

Develop a program for the systematic quantification of locally-appropriate sociocultural factors for epidemiological purposes; Establish interdisciplinary collaborations to refine “risk segmentation” methodologies and practices for better real-world accuracy; Create and pre-position qualitative indicators and composite social indexes that can be rapidly deployed during epidemic outbreaks; Use untapped community resources to create real-time, rolling data collection and response integration capabilities; Develop new techniques for modeling social mobilization and community engagement; Prioritize accurate, high-quality data collection and rapid development of multiple modeling frameworks early in the emergency response; Draw upon the experience of the West Africa Ebola outbreak of 2014-15.

Supplementary Material

Click here to access/download;Figure;abramowitz_LESSONS_FROM_WA_E

SUPPLEMENTARY MATERIAL A: SEARCH SENTENCES

Table 1 Search String for EPI and SBS Literature Review Searches EPI search string Limiters:


Search sentences


SBS search string


1

SUPPLEMENTARY MATERIAL B: THEMATIC CODES AND SUB-CODES

Age groups/vulnerable populations under 5s children youth disabled/disabilities orphans Alt health practices self-treatment midwives or traditional birth attendants HH-based caregivingcaretaking Private healers, traditional healers, herbalists local health-seeking behaviors pregnant/labor Clinical ETUs/ETCs/hospitals Community Care Centers (CCCs) EVD signs and symptoms patient care supportive care/fluid replacement intake/triage Treatments and therapies clinical outcomes readmission Clinical trials compassionate use exemption convalescent plasma TKM-100802 (siRNA)

VSV-EBOV, rVSV-ZEBOV Zmapp Favipiravir ChAd3-Zebov Brincidofavir clinical trials participation Community engagement acceptance community engagement community meetings community participation community response community surveillance political paramount chief or community leaders community events Diagnosis barriers to testing early detection Lab tests testing tech and laboratory resources mobile laboratories RT-PCR lack of training HCWs and protective equipment Economic impact homelessness/lose or abandon house remittances Money food economic collapse no electricity no water

no clothes no job no sanitation lose farm Epidemiology themes biomarkers case-fatality rate contact mixing patterns End of epidemic/epidemic tail epidemic waves incidence incubation period morbidity mortality co-morbidity/co-mortality evolutionary dynamics of virus lethality/risk of death mutations Viral immunoresistance/ herd immunity viral load Ethics mandate legitimacy research ethics human rights humanitarian ethics medical ethics public health ethics sovereignty Funerals/burials funerary practices/burials/funerals attitudes towards death/burials cremation

2

SUPPLEMENTARY MATERIAL B: THEMATIC CODES AND SUB-CODES

Health communications strategies megaphone/pub announcement/billboard television religion communication house visits theatre, dance, music SMS social media radio news reports diaspora western media/journalism Health systems accountability legislation surveillance capabilities access to information or lack of restricted access to healthcare non-Ebola health services non-Ebola health needs detailing of HSS weaknesses communications global health global health governance hotlines/call center HS finance infrastructure laboratories Guinea health system Liberia health system Nigeria health system Sierra Leone health system

pharmaceuticals preparedness training WASH History archeology of epidemics history of region history of epidemics history of Ebola Location of research Liberia Guinea Sierra Leone Nigeria Other Mobility reasons for mobility/social networks international travel/borders genomic tracing migration/immigration intensity of mobility remote communities urban/rural variables curfews/checkpoints/roadblocks/bylaws on strangers susceptible-exposed-infectiousresolved model - SEIR stochastic model forecasting models epidemic models Other diseases addressed/compared Other disease comparisons

sleeping sickness chikungunya influenza SARS polio all-cause mortality Marburg Virus HIV/AIDS anthrax black plague/Bubonic plague cholera hepatitis A, B, D, C, E Lassa fever malaria maternal mortality measles smallpox TB typhoid typhus yellow fever H1N1 dengue Outbreak investigation transmission chains transmission pathways human-non-human interaction environmental change source investigation Reproduction number super-spreader events Survival rate time to reporting, isolation, treatment seeking Political themes

3

SUPPLEMENTARY MATERIAL B: THEMATIC CODES AND SUB-CODES language of emergency or language of war transparency, lack of transparency ETU as 'camp', camps threat of violence/violence political economy government distrust insecurity party politics geopolitics excombatants corruption crime intra community conflict lack of confidence in authorities exclusion elites Representations social structures and institutions IHR/PHEIC Post-Ebola future clinical future community capabilities, local ownership future surveillance future testing HSS (health systems strengthening) immunization concerns/vaccine hesitancy Psychosocial

grief, distress, mourning, loss fear dignity/dignified/respect denial ingenuity compassion/sympathy social support hysteria stigma mental disorders trauma resilience trust/mistrust Hiding behaviors psychosocial well-being blame anger Public health response rapid response slow response/failure coordination specific interventions expert authority/need for experts behavior change contact-tracing Global EVD Response need for HSS finance/finance authority/need for additional funds Holding centers Isolation IPC Quarantine support

Quarantine social mobilization no touch Research timeframe Pre-response/Dec13-Jul14 Phase 1/Aug14-Dec14 Phase 2/Jan15-Jul15 Phase 3/Aug15-Jul16 Risk factors sociodemographic risk factors risk factors – specific household PPE adherence and compliance early spread exposure to sick person PPE Protective factors spread through fluids Rumors, myths and misinformation money making Ebola is not real global misinformation stolen body parts state is poisoning people international poisoning people blood/stealing blood salt cure biological testing in Afr. populations sanitizer or bleach circulated via text message

4

SUPPLEMENTARY MATERIAL B: THEMATIC CODES AND SUB-CODES bitter cola wells were poisoned cannibalism west is testing bioweapons Sample size of study 10,000+ 1000-9999 500-999 101-499 0-100 Sociocultural themes agriculture attitudes and beliefs beliefs about illness community resistance customs/traditions diversity within 'traditions' education/literacy local knowledge social groups/social relations sociality sodalities/secret societies/Poro/Sande wealth/poverty witchcraft/sorcery/retribution women/gender work ancestors biosecurity/global health security blood framing humanitarian aid Images

kinship/family labelling local language othering abandonment social networks or cluster disabled/disabilities GBV/sexual violence elders/elderly/older people postconflict religion or religious leaders Sensitivity-specificity missing cases, underreporting, undercounting new case detection/case finding overcounting/overestimate similar diseases presentation new case detection

infection duration hunting sexual transmission human-to-human hidden reservoirs animal reservoirs bush meat transmission from survivors Transportation transport systems bad roads force in use of transport informal transports how are patients transported distance transported conveyance of corpses ambulances

Survivors transmission from survivors survivor service post-EVD stigma psychosocial needs of survivors representation of survivors survivor health and post-EVD syndrome survivor kits survivor reintegration Transmission nosocomial transmission community transmission use of testing in breaking zoonotic infection interrupting transmission

5

SUPPLEMENTARY MATERIAL C-2: SBS REFERENCES

Web-Annex C: EPI REFERENCES (N=387) 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14.

15. 16.

17. 18.

19. 20.

21. 22.

23. 24. 25. 26. 27.

28.

29.


6

SUPPLEMENTARY MATERIAL C-2: SBS REFERENCES 30. Atangana, A., and E. F. Goufo. "On the Mathematical Analysis of Ebola Hemorrhagic Fever: Deathly Infection Disease in West African Countries." [In Eng]. Biomed Res Int 2014 (2014): 261383. 31. Atkins, K. E., A. Pandey, N. S. Wenzel, L. Skrip, D. Yamin, T. G. Nyenswah, M. Fallah, et al. "Retrospective Analysis of the 2014-2015 Ebola Epidemic in Liberia." [In Eng]. Am J Trop Med Hyg 94, no. 4 (Apr 2016): 833-9. 32. Atkins, K. E., N. S. Wenzel, M. Ndeffo-Mbah, F. L. Altice, J. P. Townsend, and A. P. Galvani. "Under-Reporting and Case Fatality Estimates for Emerging Epidemics." [In Eng]. Bmj 350 (Mar 16 2015): h1115. 33. Azman, A. S., D. Legros, J. Lessler, F. J. Luquero, and S. M. Moore. "Outbreaks of Cholera in the Time of Ebola: PreEmptive Action Needed." [In Eng]. Lancet 385, no. 9971 (Mar 7 2015): 851. 34. Backer, Jantien A, and Jacco Wallinga. "Spatiotemporal Analysis of the 2014 Ebola Epidemic in West Africa." PLOS Computational Biology 12, no. 12 (2016): e1005210. 35. Bailey, M. S., K. Beaton, D. Bowley, W. Eardley, P. Hunt, S. Johnson, J. Round, N. T. Tarmey, and A. Williams. "Bending the Curve: Force Health Protection During the Insertion Phase of the Ebola Outbreak Response." [In Eng]. J R Army Med Corps 162, no. 3 (Jun 2016): 191-7. 36. Baiyewu, O. "Outbreak of Ebola Virus Disease in the West Africa." [In Eng]. Afr J Med Med Sci 43, no. 2 (Jun 2014): 84. 37. Baize, S., D. Pannetier, L. Oestereich, T. Rieger, L. Koivogui, N. Magassouba, B. Soropogui, et al. "Emergence of Zaire Ebola Virus Disease in Guinea." [In Eng]. N Engl J Med 371, no. 15 (Oct 9 2014): 1418-25. 38. Barbarossa, M. V., A. Denes, G. Kiss, Y. Nakata, G. Rost, and Z. Vizi. "Transmission Dynamics and Final Epidemic Size of Ebola Virus Disease Outbreaks with Varying Interventions." [In Eng]. PLoS One 10, no. 7 (2015): e0131398. 39. Barry, M., F. A. Traore, F. B. Sako, D. O. Kpamy, E. I. Bah, M. Poncin, S. Keita, M. Cisse, and A. Toure. "Ebola Outbreak in Conakry, Guinea: Epidemiological, Clinical, and Outcome Features." [In Eng]. Med Mal Infect 44, no. 1112 (Dec 2014): 491-4. 40. Bausch, D. G., and A. Rojek. "West Africa 2013: Re-Examining Ebola." [In Eng]. Microbiol Spectr 4, no. 3 (Jun 2016). 41. Bausch, D. G., and L. Schwarz. "Outbreak of Ebola Virus Disease in Guinea: Where Ecology Meets Economy." [In Eng]. PLoS Negl Trop Dis 8, no. 7 (2014): e3056. 42. Bawo, L., M. Fallah, F. Kateh, T. Nagbe, P. Clement, A. Gasasira, N. Mahmoud, et al. "Elimination of Ebola Virus Transmission in Liberia - September 3, 2015." [In Eng]. MMWR Morb Mortal Wkly Rep 64, no. 35 (Sep 11 2015): 97980. 43. Bellan, S. E., J. R. Pulliam, J. Dushoff, and L. A. Meyers. "Ebola Control: Effect of Asymptomatic Infection and Acquired Immunity." [In Eng]. Lancet 384, no. 9953 (Oct 25 2014): 1499-500. 44. Bellan, S. E., J. R. Pulliam, C. A. Pearson, D. Champredon, S. J. Fox, L. Skrip, A. P. Galvani, et al. "Statistical Power and Validity of Ebola Vaccine Trials in Sierra Leone: A Simulation Study of Trial Design and Analysis." [In Eng]. Lancet Infect Dis 15, no. 6 (Jun 2015): 703-10. 45. Bickler, S. W., R. E. Lizardo, and A. De Maio. "The Transition from a Rural to an Urban Environment Alters Expression of the Human Ebola Virus Receptor Neiman-Pick C1: Implications for the Current Epidemic in West Africa." [In Eng]. Cell Stress Chaperones 20, no. 2 (Mar 2015): 203-6. 46. Blackley, D. J., K. A. Lindblade, F. Kateh, L. N. Broyles, M. Westercamp, J. C. Neatherlin, S. K. Pillai, et al. "Rapid Intervention to Reduce Ebola Transmission in a Remote Village - Gbarpolu County, Liberia, 2014." [In Eng]. MMWR Morb Mortal Wkly Rep 64, no. 7 (Feb 27 2015): 175-8. 47. Bogoch, II, M. I. Creatore, M. S. Cetron, J. S. Brownstein, N. Pesik, J. Miniota, T. Tam, et al. "Assessment of the Potential for International Dissemination of Ebola Virus Via Commercial Air Travel During the 2014 West African Outbreak." [In Eng]. Lancet 385, no. 9962 (Jan 3 2015): 29-35. 48. Bogus, J., L. Gankpala, K. Fischer, A. Krentel, G. J. Weil, P. U. Fischer, K. Kollie, and F. K. Bolay. "Community Attitudes toward Mass Drug Administration for Control and Elimination of Neglected Tropical Diseases after the 2014 Outbreak of Ebola Virus Disease in Lofa County, Liberia." [In Eng]. Am J Trop Med Hyg 94, no. 3 (Mar 2016): 497503. 49. Boisen, M. L., J. N. Hartnett, A. Goba, M. A. Vandi, D. S. Grant, J. S. Schieffelin, R. F. Garry, and L. M. Branco. "Epidemiology and Management of the 2013-16 West African Ebola Outbreak." [In Eng]. Annu Rev Virol 3, no. 1 (Sep 29 2016): 147-71. 50. Bolkan, H. A., D. A. Bash-Taqi, M. Samai, M. Gerdin, and J. von Schreeb. "Ebola and Indirect Effects on Health Service Function in Sierra Leone." [In Eng]. PLoS Curr 6 (Dec 19 2014). 51. Bordes, J., L. Karkowski, J. M. Cournac, N. Gagnon, M. Billhot, C. Rousseau, T. De Greslan, and G. Cellarier. "Dyspnea and Risk of Death in Ebola Infected Patients: Is Lung Really Involved?" [In Eng]. Clin Infect Dis 61, no. 5 (Sep 1 2015): 852. 52. Boulton, J. "Ebola: Where Did It Come from and Where Might It Go?" [In Eng]. Br J Nurs 23, no. 18 (Oct 9-22 2014): 988-91. 53. Breakwell, L., A. R. Gerber, A. L. Greiner, D. L. Hastings, K. Mirkovic, M. M. Paczkowski, S. Sidibe, et al. "Early Identification and Prevention of the Spread of Ebola in High-Risk African Countries." [In Eng]. MMWR Suppl 65, no. 3 (Jul 08 2016): 21-7.

7

SUPPLEMENTARY MATERIAL C-2: SBS REFERENCES 54. Brolin Ribacke, K. J., A. J. van Duinen, H. Nordenstedt, J. Hoijer, R. Molnes, T. W. Froseth, A. P. Koroma, et al. "The Impact of the West Africa Ebola Outbreak on Obstetric Health Care in Sierra Leone." [In Eng]. PLoS One 11, no. 2 (2016): e0150080. 55. Brown, G. D., J. J. Oleson, and A. T. Porter. "An Empirically Adjusted Approach to Reproductive Number Estimation for Stochastic Compartmental Models: A Case Study of Two Ebola Outbreaks." [In Eng]. Biometrics 72, no. 2 (Jun 2016): 335-43. 56. Browne, C., H. Gulbudak, and G. Webb. "Modeling Contact Tracing in Outbreaks with Application to Ebola." [In Eng]. J Theor Biol 384 (Nov 7 2015): 33-49. 57. Burkle, F. M., Jr., and C. M. Burkle. "Triage Management, Survival, and the Law in the Age of Ebola." [In Eng]. Disaster Med Public Health Prep 9, no. 1 (Feb 2015): 38-43. 58. Buscema, M. "Why Mathematical Computer Simulations Are the New Laboratory for Scientists." [In Eng]. Subst Use Misuse 50, no. 8-9 (2015): 1058-78. 59. Buseh, A. G., P. E. Stevens, M. Bromberg, and S. T. Kelber. "The Ebola Epidemic in West Africa: Challenges, Opportunities, and Policy Priority Areas." [In Eng]. Nurs Outlook 63, no. 1 (Jan-Feb 2015): 30-40. 60. Butler, D. "Models Overestimate Ebola Cases." [In Eng]. Nature 515, no. 7525 (Nov 6 2014): 18. 61. Butler, D., and L. Morello. "Ebola by the Numbers: The Size, Spread and Cost of an Outbreak." [In Eng]. Nature 514, no. 7522 (Oct 16 2014): 284-5. 62. Callaway, E. "Hunt for Ebola's Wild Hideout Takes Off as Epidemic Wanes." [In Eng]. Nature 529, no. 7585 (Jan 14 2016): 138-9. 63. Camacho, A., R. M. Eggo, S. Funk, C. H. Watson, A. J. Kucharski, and W. J. Edmunds. "Estimating the Probability of Demonstrating Vaccine Efficacy in the Declining Ebola Epidemic: A Bayesian Modelling Approach." [In Eng]. BMJ Open 5, no. 12 (Dec 15 2015): e009346. 64. Camacho, A., A. Kucharski, Y. Aki-Sawyerr, M. A. White, S. Flasche, M. Baguelin, T. Pollington, et al. "Temporal Changes in Ebola Transmission in Sierra Leone and Implications for Control Requirements: A Real-Time Modelling Study." [In Eng]. PLoS Curr 7 (Feb 10 2015). 65. Camacho, A., A. J. Kucharski, S. Funk, J. Breman, P. Piot, and W. J. Edmunds. "Potential for Large Outbreaks of Ebola Virus Disease." [In Eng]. Epidemics 9 (Dec 2014): 70-8. 66. Carias, C., B. Greening, Jr., C. G. Campbell, M. I. Meltzer, and M. J. Hamel. "Preventive Malaria Treatment for Contacts of Patients with Ebola Virus Disease in the Context of the West Africa 2014-15 Ebola Virus Disease Response: An Economic Analysis." [In Eng]. Lancet Infect Dis 16, no. 4 (Apr 2016): 449-58. 67. Carod-Artal, F. J. "[Illness Due the Ebola Virus: Epidemiology and Clinical Manifestations within the Context of an International Public Health Emergency]." [In Spa]. Rev Neurol 60, no. 6 (Mar 16 2015): 267-77. 68. Carroll, M. W., D. A. Matthews, J. A. Hiscox, M. J. Elmore, G. Pollakis, A. Rambaut, R. Hewson, et al. 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"Ebola and Marburg Virus Diseases in Africa: Increased Risk of Outbreaks in Previously Unaffected Areas?" [In Eng]. Microbiol Immunol 58, no. 9 (Sep 2014): 483-91. 74. Chen, Z., G. Chang, W. Zhang, Y. Chen, X. Wang, R. Yang, and C. Liu. "Mobile Laboratory in Sierra Leone During Outbreak of Ebola: Practices and Implications." [In Eng]. Sci China Life Sci 58, no. 9 (Sep 2015): 918-21. 75. Cherif, MS, N Koonrungsesomboon, MP Diallo, E Le Gall, D Kassé, F Cherif, A Koné, et al. "The Predictor of Mortality Outcome in Adult Patients with Ebola Virus Disease During the 2014–2015 Outbreak in Guinea." European Journal of Clinical Microbiology & Infectious Diseases (2016): 1-7. 76. Chevillotte, J. "[France Mobilizes Health Care Professionals against Ebola]." [In Fre]. Rev Infirm, no. 206 (Dec 2014): 8. 77. Chiappelli, F., A. Bakhordarian, A. D. Thames, A. M. Du, A. L. Jan, M. Nahcivan, M. T. Nguyen, et al. "Ebola: Translational Science Considerations." [In Eng]. 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SUPPLEMENTARY MATERIAL C-2: SBS REFERENCES 81. Chowell, G., L. Simonsen, C. Viboud, and Y. Kuang. "Is West Africa Approaching a Catastrophic Phase or Is the 2014 Ebola Epidemic Slowing Down? Different Models Yield Different Answers for Liberia." [In Eng]. PLoS Curr 6 (Nov 20 2014). 82. Chowell, G., C. Viboud, J. M. Hyman, and L. Simonsen. "The Western Africa Ebola Virus Disease Epidemic Exhibits Both Global Exponential and Local Polynomial Growth Rates." [In Eng]. PLoS Curr 7 (Jan 21 2015). 83. Chretien, J. P., S. Riley, and D. B. George. "Mathematical Modeling of the West Africa Ebola Epidemic." [In Eng]. Elife 4 (Dec 08 2015). 84. Christie, A., G. J. Davies-Wayne, T. Cordier-Lassalle, D. J. Blackley, A. S. Laney, D. E. Williams, S. A. Shinde, et al. "Possible Sexual Transmission of Ebola Virus - Liberia, 2015." [In Eng]. MMWR Morb Mortal Wkly Rep 64, no. 17 (May 8 2015): 479-81. 85. Chua, A. C., J. Cunningham, F. Moussy, M. D. Perkins, and P. Formenty. 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SUPPLEMENTARY MATERIAL C-2: SBS REFERENCES 364. Washington, Michael L, and Martin L Meltzer. "Effectiveness of Ebola Treatment Units and Community Care Centers—Liberia, September 23–October 31, 2014." MMWR Morb Mortal Wkly Rep 64, no. 3 (2015): 67-9. 365. Webb, G. F., and C. J. Browne. "A Model of the Ebola Epidemics in West Africa Incorporating Age of Infection." Journal of Biological Dynamics 10, no. 1 (2016): 18-30. 366. Webb, Lindsey Martin, Sheri A. Tubach, D. Charles Hunt, Control Centers for Disease, and Prevention. "Outbreak of Cryptosporidiosis among Responders to a Rollover of a Truck Carrying Calves - Kansas, April 2013." MMWR. Morbidity and mortality weekly report 63, no. 50 (2014): 1185. 367. Weitz, J. S., and J. Dushoff. "Modeling Post-Death Transmission of Ebola: Challenges for Inference and Opportunities for Control." [In Eng]. Sci Rep 5 (Mar 04 2015): 8751. 368. Weyer, J., A. Grobbelaar, and L. Blumberg. "Ebola Virus Disease: History, Epidemiology and Outbreaks." [In Eng]. Curr Infect Dis Rep 17, no. 5 (May 2015): 480. 369. Whitty, C. J., J. Farrar, N. Ferguson, W. J. Edmunds, P. Piot, M. Leach, and S. C. Davies. "Infectious Disease: Tough Choices to Reduce Ebola Transmission." [In Eng]. Nature 515, no. 7526 (Nov 13 2014): 192-4. 370. WHO. "Helping Guinean Communities Fight Ebola." [In Eng 371. Fre]. Wkly Epidemiol Rec 90, no. 28 (Jul 10 2015): 362-4. 372. ———. "How Liberia Reached Zero Cases of Ebola Virus Disease." [In Eng 373. Fre]. Wkly Epidemiol Rec 90, no. 21 (May 22 2015): 259-60. 374. ———. "Ebola Virus Disease (Evd) in West Africa: An Extraordinary Epidemic." [In Eng 375. Fre]. Wkly Epidemiol Rec 90, no. 10 (Mar 6 2015): 89-96. 376. WHO Ebola Response Team. "Ebola Virus Disease in West Africa—the First 9 Months of the Epidemic and Forward Projections." N Engl J Med 371, no. 16 (2014): 1481-95. 377. ———. "Ebola Virus Disease among Male and Female Persons in West Africa." The New England journal of medicine 374, no. 1 (2016): 96. 378. ———. "Ebola Virus Disease among Male and Female Persons in West Africa." The New England journal of medicine 374, no. 1 (2016): 96. 379. Williams, G. S., J. Naiene, J. Gayflor, T. Malibiche, B. Zoogley, W. G. Frank, Jr., and F. Nayeri. "Twenty-One Days of Isolation: A Prospective Observational Cohort Study of an Ebola-Exposed Hot Zone Community in Liberia." [In Eng]. J Infect 71, no. 2 (Aug 2015): 150-7. 380. Wiratsudakul, A., W. Triampo, Y. Laosiritaworn, and C. Modchang. "A One-Year Effective Reproduction Number of the 2014-2015 Ebola Outbreaks in the Widespread West African Countries and Quantitative Evaluation of Air Travel Restriction Measure." [In Eng]. Travel Med Infect Dis 14, no. 5 (Sep - Oct 2016): 481-88. 381. Wong, J. Y., W. Zhang, D. Kargbo, U. Haque, W. Hu, P. Wu, A. Kamara, et al. "Assessment of the Severity of Ebola Virus Disease in Sierra Leone in 2014-2015." [In Eng]. Epidemiol Infect 144, no. 7 (May 2016): 1473-81. 382. WHO Ebola Response Team. "Ebola Virus Disease in West Africa—the First 9 Months of the Epidemic and Forward Projections." N Engl J Med 2014, no. 371 (2014): 1481-95. 383. Xia, Z. Q., S. F. Wang, S. L. Li, L. Y. Huang, W. Y. Zhang, G. Q. Sun, Z. T. Gai, and Z. Jin. "Modeling the Transmission Dynamics of Ebola Virus Disease in Liberia." [In Eng]. Sci Rep 5 (Sep 08 2015): 13857. 384. Yamin, D., S. Gertler, M. L. Ndeffo-Mbah, L. A. Skrip, M. Fallah, T. G. Nyenswah, F. L. Altice, and A. P. Galvani. "Effect of Ebola Progression on Transmission and Control in Liberia." [In Eng]. Ann Intern Med 162, no. 1 (Jan 6 2015): 11-7. 385. Yang, W., W. Zhang, D. Kargbo, R. Yang, Y. Chen, Z. Chen, A. Kamara, et al. "Transmission Network of the 20142015 Ebola Epidemic in Sierra Leone." [In Eng]. J R Soc Interface 12, no. 112 (Nov 6 2015). 386. Yozwiak, N. L., S. F. Schaffner, and P. C. Sabeti. "Data Sharing: Make Outbreak Research Open Access." [In Eng]. Nature 518, no. 7540 (Feb 26 2015): 477-9. 387. Zinszer, K., K. Morrison, A. Anema, M. S. Majumder, and J. S. Brownstein. "The Velocity of Ebola Spread in Parts of West Africa." [In Eng]. Lancet Infect Dis 15, no. 9 (Sep 2015): 1005-7. Zwizwai, Ruth. "Infectious Disease Surveillance Update." Lancet Infectious Diseases 15, no. 5 (2015): 516-16.

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SUPPLEMENTARY MATERIAL C-2: SBS REFERENCES 27. Benton, Adia, and Kim Yi Dionne. "International Political Economy and the 2014 West African Ebola Outbreak." African Studies Review 58, no. 01 (2015): 223-36. 28. Biruk, Crystal. "Ebola and Emergency Anthropology: The View from the “Global Health Slot”. Somatosphere." 2014. 29. Blair, Robert A, Benjamin S Morse, and Lily L Tsai. "Public Health and Public Trust: Survey Evidence from the Ebola Virus Disease Epidemic in Liberia." Social Science & Medicine (2016). 30. Bogus, J., L. Gankpala, K. Fischer, A. Krentel, G. J. Weil, P. U. Fischer, K. Kollie, and F. K. Bolay. "Community Attitudes toward Mass Drug Administration for Control and Elimination of Neglected Tropical Diseases after the 2014 Outbreak of Ebola Virus Disease in Lofa County, Liberia." [In Eng]. Am J Trop Med Hyg 94, no. 3 (Mar 2016): 497503. 31. Bolten, Catherine. "Articulating the Invisible: Ebola Beyond Witchcraft in Sierra Leone." Cultural Anthropology Online (2014). 32. 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Kolie, B. Diallo, M. Kone, G. Rodier, C. Kpoghomou, and J. M. Jansa. "Social and Cultural Factors Behind Community Resistance During an Ebola Outbreak in a Village of the Guinean Forest Region, February 2015: A Field Experience." [In Eng]. Int Health 8, no. 3 (May 2016): 227-9. 38. Catholic Relief Services, Focus 1000, and UNICEF. "Study on Public Knowledge, Attitudes, and Practices Relating to Ebola Virus Disease (Evd) Prevention and Medical Care in Sierra Leone." 2014. 39. Chiappelli, Francesco, Andre Bakhordarian, April D Thames, Angela M Du, Allison L Jan, Melissa Nahcivan, Mia T Nguyen, et al. "Ebola: Translational Science Considerations." Journal of translational medicine 13, no. 1 (2015): 1. 40. Closser, Svea, and Erin P Finley. "A New Reflexivity: Why Anthropology Matters in Contemporary Health Research and Practice, and How to Make It Matter More." American Anthropologist (2016). 41. 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SUPPLEMENTARY MATERIAL C-2: SBS REFERENCES 56. Epelboin, Alain, P Formenty, J Anoko, and Y Allarangar. "Humanisation and Informed Consent for People and Populations During Responses to Vhf in Central Africa (2003-2008)." Paper presented at the Humanitarian Borders, 2007. 57. Erikson, Susan L. "The Financialization of Ebola." Somatosphere Science, Medicine, and Anthropology (11/11/15 2015). 58. Fairhead, James. "The Significance of Death, Funerals and the after-Life in Ebola-Hit Sierra Leone, Guinea and Liberia: Anthropological Insights into Infection and Social Resistance - Draft Briefing Paper." Ebola Anthropology Response Platform (09/10/14 2014). 59. Fairhead, James. "Understanding Social Resistance to Ebola Response in the Forest Region of the Republic of Guinea: An Anthropological Perspective." African Studies Review (2016). 60. Fairhead, J, and P Richards. "Burial/Other Cultural Practices and Risk of Evd Transmission in the Mano River Region. 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SUPPLEMENTARY MATERIAL C-2: SBS REFERENCES 83. Institute of Development Studies. "Africa Appg Inquiry: Community Led Health Systems & the Ebola Outbreak." Ebola Response Anthropology Platform (2015). 84. James, Sonny-Boy, Esther Mokuwa, and Paul Richards. "Interviews on Ebola Response, Bo, 15-17th December 2014 Fourth Interim Report to the Smac Program, Dfid Freetown." Njala University, 2015. 85. Johnson, Ginger, Juliet Bedford, Amanda McClelland, Amanda Tiffany, and Ben Dalziel. "Evaluating the Impact of Safe and Dignified Burials for Stopping Ebola Transmission in West Africa - Summary Findings from the Anthropological Study of Guinea." edited by Anthropologica International Federation of Red Cross and Red Cresent Societies, Croix-Rouge Guineenne, 2015. 86. Jones, Bryony A., Delia Grace, Richard Kock, Silvia Alonso, Jonathan Rushton, Mohammed Y. Said, Declan McKeever, et al. "Zoonosis Emergence Linked to Agricultural Intensification and Environmental Change." 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SUPPLEMENTARY MATERIAL C-2: SBS REFERENCES 118. Matua, G. A., and D. M. Wal. "Living under the Constant Threat of Ebola: A Phenomenological Study of Survivors and Family Caregivers During an Ebola Outbreak." [In Eng]. J Nurs Res 23, no. 3 (Sep 2015): 217-24. 119. McGovern, Mike. "Bushmeat and the Politics of Disgust." Field Sites–Hot Spots, Cultural Anthropology Online (2014). 120. McInnes, Colin. "Who's Next? Changing Authority in Global Health Governance after Ebola." International Affairs 91, no. 6 (2015): 1299-316. 121. McLean, K. E., S. A. Abramowitz, J. D. Ball, J. Monger, K. Tehoungue, S. L. McKune, M. Fallah, and P. A. Omidian. "Community-Based Reports of Morbidity, Mortality, and Health-Seeking Behaviours in Four Monrovia Communities During the West African Ebola Epidemic." [In Eng]. Glob Public Health (Jul 27 2016): 1-17. 122. Minor Peters, Melissa. "Community Perceptions of Ebola Response Efforts in Liberia: Montserrado and Nimba Counties." 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Paige, Sarah B, Carly Malavé, Edith Mbabazi, Jonathan Mayer, and Tony L Goldberg. "Uncovering Zoonoses Awareness in an Emerging Disease ‘Hotspot’." Social Science & Medicine 129 (2015): 78-86. 142. Park, Sung-Joon, and René Umlauf. "Caring as Existential Insecurity: Quarantine, Care, and Human Insecurity in the Ebola Crisis." Somatosphere, November 24 (2014). 143. Patterson, Donna A. "Ebola: Inequalities in Biomedical Capacity and International Response." Anthropologie et Santé 11 (2015). 144. Pellecchia, Umberto. "Do Traditions Spread Ebola?". Ebola Anthropology Response Platform (2015). 145. Pellecchia, Umberto, Rosa Crestani, Tom Decroo, Rafael Van den Bergh, and Yasmine Al-Kourdi. "Social Consequences of Ebola Containment Measures in Liberia." PloS one 10, no. 12 (2015): e0143036. 146. Perry, John, and T Debey Sayndee. Social Mobilization and the Ebola Virus Disease in Liberia. Rowman & Littlefield, 2016. 147. Pieterse, P., and T. Lodge. "When Free Healthcare Is Not Free. Corruption and Mistrust in Sierra Leone's Primary Healthcare System Immediately Prior to the Ebola Outbreak." [In Eng]. Int Health 7, no. 6 (Nov 2015): 400-4. 148. Platform, Ebola Response Anthropology. "Ebola and Older People in Sierra Leone, Liberia and Guinea - Briefing Note." Ebola Anthropology Response Platform (11/12/2014 2014). 149. Pooley, Simon, John E Fa, and Robert Nasi. "No Conservation Silver Lining to Ebola." Conservation Biology 29, no. 3 (2015): 965-67.

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SUPPLEMENTARY MATERIAL C-2: SBS REFERENCES 150. Pruyt, Erik, Willem L. Auping, and Jan H. Kwakkel. "Ebola in West Africa: Model-Based Exploration of Social Psychological Effects and Interventions: Ebola in West Africa." Systems Research and Behavioral Science 32, no. 1 (2015): 2-14. 151. Radin, Joanna. "Frozen by the Hot Zone." Limn 5 (2015). 152. Ramdass, Shekira. "The United States Interests in the Ebola Outbreak in West Africa." Virginia Review of Asian Studies 17 (2015): 221-45. 153. Ravi, S. J., and E. M. Gauldin. "Sociocultural Dimensions of the Ebola Virus Disease Outbreak in Liberia." [In Eng]. Biosecur Bioterror 12, no. 6 (Nov-Dec 2014): 301-5. 154. Redfield, P. "Medical Vulnerability, or Where There Is No Kit." Limn 5 (2015). 155. Reina-Ortiz, Miguel, Ismael Hoare, Vinita Sharma, and Ricardo Izurieta. "State of the Globe: Ebola Outbreak in the Western World: Are We Really Ready?". Journal of global infectious diseases 7, no. 2 (2015): 53. 156. Richards, Paul. "How Ebola Infection Spreads and Terminates in Rural Sierra Leone - an Analytical Note. Fifth Interim Report to the Smac Program, Dfid Freetom." Ebola Response Anthropology Platform: Njala University, 2015. 157. Richards, Paul. "Do Funerals Spread Ebola in Sierra Leone." Ebola Anthropology Response Platform (2014). 158. Richards, Paul, Joseph Amara, Mariane C Ferme, Prince Kamara, Esther Mokuwa, Amara Idara Sheriff, Roland Suluku, and Maarten Voors. "Social Pathways for Ebola Virus Disease in Rural Sierra Leone, and Some Implications for Containment." PLoS Negl Trop Dis 9, no. 4 (2015): e0003567. 159. Richards, P., J. Amara, E. Mokuwa, A. Mokuwa, and R. Suluku. "Village Responses to Ebola Virus Disease and Its Prevention - Gbo Chiefdom, Bo District, Sierra Leone - Eighth Interim Report to the Smac Program, Dfid Freetown." Ebola Response Anthropology Platform: Njala University, 2015. 160. Richards, P., J Amara, E Mokuwa, A Mokuwa, and R Suluku. "What Causes Ebola Virus Disease? Views for Four Villages on the Edge of the Gola Rain Forest National Park, Sierra Leone - Third Interim Report to the Smac Program, Dfid Freetown." Ebola Response Anthropology Platform: Njala University, 2015. 161. Richards, P., J. Amara, E. Mokuwa, A. Mokuwa, and R. Suluku. "Village Responses to Ebola Virus Disease in Rural Eastern Sierra Leone - Second Interim Report to the Smac Program, Dfid Freetown." Ebola Response Anthropology Platform: Njala University, 2015. 162. Richards, Paul, and James Fairhead. "Burial/Other Cultural Practices and Risk of Evd Transmission in the Mano River Region." Ebola Anthropology Response Platform (14/10/14 2014). 163. Richards, Paul, and A Mokuwa. "Village Funerals and the Spread of Ebola Virus Disease." Cultural Anthropology Online (2014). 164. Richards, Paul, and Esther Mokuwa. "Big Changes Found in Rural Communities in Ebola Awareness and Response." 165. Richards, P R Suluku, A Mokuwa, and J Amara. "Village Responses to Ebola Virus Disease in Rural Central Sierra Leone - an Interim Report to the Smac Program, Dfid Freetown." Ebola Response Anthropology Platform: Njala Univeristy, 2015. 166. Richardson, Eugene T, Mohamed Bailor Barrie, J Daniel Kelly, Yusupha Dibba, Songor Koedoyoma, and Paul E Farmer. "Biosocial Approaches to the 2013-2016 Ebola Pandemic." Health Hum Rights 18, no. 1 (2016): 115-28. 167. Rid, A., and E. J. Emanuel. "Ethical Considerations of Experimental Interventions in the Ebola Outbreak." The Lancet 384, no. 9957 (2014): 1896-99. 168. Risso-Gill, Isabelle, and Leah Finnegan. "Children's Ebola Recovery Assessment: Sierra Leone." Save the Children Fund, World Vision International, Plan International, UNICEF, 2015. 169. Rizkalla, Carol, Francisco Blanco-Silva, and Stephanie Gruver. "Modeling the Impact of Ebola and Bushmeat Hunting on Western Lowland Gorillas." EcoHealth 4, no. 2 (2007): 151-55. 170. Rohwerder, Brigitte. "Impact and Implications of the Ebola Crisis." (2014). 171. Rubyan-Ling, David. "Briefing Paper: Diaspora Communications and Health Seeking Behaviour in the Time of Ebola: Findings from the Sierra Leonean Community in London." In Ebola Response Anthropology Platform, 2015. 172. Saez, Almudena Mari, and Matthias Borchert. "Burial in Times of Ebola - Dos and Don't - Issues of Acceptability." Ebola Anthropology Response Platform (2014). 173. Saez, Almudena Mari, Ann Kelly, and Hannah Brown. "Notes from Case Zero: Anthropology in the Time of Ebola." Notes (2014). 174. Saéz, Almudena Marí, Sabrina Weiss, Kathrin Nowak, Vincent Lapeyre, Fee Zimmermann, Ariane Düx, Hjalmar S Kühl, et al. "Investigating the Zoonotic Origin of the West African Ebola Epidemic." EMBO molecular medicine 7, no. 1 (2015): 17-23. 175. Sayegh, Jackie. "Ebola and the Health Care Crisis in Liberia." Cultural Anthropology Website (2014). 176. Schroven, Anita. "Ebola in Guinea: Revealing the State of the State." Hot Spots, Cultural Anthropology website. October 7, 2014. Available from (2014). 177. Shepler, Susan. "'We Know Who Is Eating the Ebola Money!': Corruption, the State, and the Ebola Repsonse." Anthropology Quarterly (2017). 178. Shultz, James M, Benjamin M Althouse, Florence Baingana, Janice L Cooper, Maria Espinola, M Claire Greene, Zelde Espinel, et al. "Fear Factor: The Unseen Perils of the Ebola Outbreak." Bulletin of the Atomic Scientists 72, no. 5 (2016): 304-10.

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SUPPLEMENTARY MATERIAL C-2: SBS REFERENCES 179. Shultz, James M, Janice L Cooper, Florence Baingana, Maria A Oquendo, Zelde Espinel, Benjamin M Althouse, Louis Herns Marcelin, et al. "The Role of Fear-Related Behaviors in the 2013–2016 West Africa Ebola Virus Disease Outbreak." Current psychiatry reports 18, no. 11 (2016): 104. 180. Sierra Leone Ministry of Social Welfare, Gender and Children's Affairs, UN Women Sierra Leone, OXFAM Sierra Leone, and Statistics Sierra Leone. "Report of the Multisector Impact Assessment of Gender Dimensions of the Ebola Virus Disease (Evd) in Sierra Leone." 2014. 181. Slaney, Evan. "Socratic Dialogue as a Framework for Understanding Activist Music During the Ebola Outbreak in Liberia." Nota Bene: Canadian Undergraduate Journal of Musicology 9, no. 1 (2016): 71. 182. Smith, Tara C. "Ebola as a Course: Uniting Basic Sciences, Public Health and the Humanities." Journal of Public Health (2015): fdv165. 183. Smout, E. "Communicating in a Crisis Like Ebola: Facts and Figures." SCiDevNet (2015). 184. Söderström, Johanna. "Ebola and the Ex-Combatant Community." Fieldsights–Hot Spots, Cultural Anthropology Online (2014). 185. Sprecher, Armand. "Handle Survivors with Care." New England Journal of Medicine (2015). 186. Tambo, Ernest, Emmanuel Chidiebere Ugwu, and Jeane Yonkeu Ngogang. "Need of Surveillance Response Systems to Combat Ebola Outbreaks and Other Emerging Infectious Diseases in African Countries." Infectious diseases of poverty 3, no. 1 (2014): 1. 187. The Liberia Ministry of Health. "National Knowledge, Attitudes and Practices Study on Ebola Virus Disease." Monrovia Liberia, 2015. 188. Tucker, Boima. "Beats, Rhymes and Ebola." Cultural Anthropology Online, 7th October (2014). 189. UNICEF Programme Division. "20 Lessons Learned to Inform C4d Responses to Ebola Outbreaks, West Africa, 2014." UNICEF New York: UNICEF, 2014. 190. UNMEER, and Emergency Ebola Anthropology Initiative. "Regional Food Insecurity, Work Migration and Roadblocks - Key Considerations." United Nations Mission for Emergency Ebola Response (2014). 191. ———. "Mobilising Youth for Ebola Education: Sierre Leone and Liberia." United Nations Mission for Emergency Ebola Response (30/10/14 2014). 192. ———. "Sierra Leone: Gift Giving During Initial Community Consultations (for Cccs)." United Nations Mission for Emergency Ebola Response (28/10/2014 2014). 193. ———. "Liberia: Handling of Bodies and National Memorials - Key Considerations." United Nations Mission for Emergency Ebola Response (27/10/14 2014). 194. ———. "Resistance in Guinea - June 2015." United Nations Mission for Emergency Ebola Response (2015). 195. ———. "The Flow of Money at the Community Level." United Nations Mission for Emergency Ebola Response (2015). 196. UNMEER, Emergency Ebola Anthropology Initiative, and Patricia Omidian. "Brief on Attitudes Towards EbolaRelated Funerary Practices and Memorialization in Urban Liberia." United Nations Mission for Emergency Ebola Response (2014). 197. Vogel, Gretchen. "Are Bats Spreading Ebola across Sub-Saharan Africa?". Science 344, no. 6180 (2014): 140-40. 198. Vora, Neil M, Ray R Arthur, David L Swerdlow, and Frederick J Angulo. "Preparation of at-Risk West African Countries for Ebola." The Lancet 385, no. 9965 (2015): 329-30. 199. Walker, Naomi F, and Christopher JM Whitty. "Tackling Emerging Infections: Clinical and Public Health Lessons from the West African Ebola Virus Disease Outbreak, 2014–2015." Clinical Medicine 15, no. 5 (2015): 457-60. 200. Wesley, Patricia Jabbeh. "Liberia’s Ebola Epidemic: Did the Government Fall Asleep at the Wheel." Cultural Anthropology Online. 7th October (2014). 201. Whiteford, Linda. "Global Health, Medical Anthropology, and Social Marketing: Steps to the Ecology of Collaboration." Collegium antropologicum 39, no. 2 (2015). 202. Whiteford, Linda M, and Mika Kadono. "The Disease Detectives." General Anthropology 22, no. 2 (2015): 1-10. 203. Wigmore, Rosie. "Contextualising Ebola Rumours from a Political, Historical and Social Perspective to Understand People's Perceptions of Ebola and the Responses to It." Ebola Response Anthropology Platform (2015). 204. Wilkinson, A. "Ebola: Failures, Flashpoints and Focus." In http://steps-centre.org/2014/blog/ebola/, edited by STEPS centre, 2014. 205. ———. "Emerging Disease or Emerging Diagnosis? Socio-Technical Perspectives on Lassa Fever and Ebola in West Africa." Anthropology Quarterly (2017). 206. Wilkinson, Annie, and James Fairhead. "Comparison of Social Resistance to Ebola Response in Sierra Leone and Guinea Suggests Explanations Lie in Political Configurations Not Culture." Critical Public Health (2016): 1-14. 207. Wilkinson, Annie, and Melissa Leach. "Briefing: Ebola –Myths, Realities, and Structural Violence." African Affairs (2014): adu080. 208. Wilkinson, A, J Lipton, F Martineau, C Chandler, and Ebola Response Anthropology Platform. "Mobilising Informal Health Workers for the Ebola Response: Potential and Programme Considerations - Briefing Note." Ebola Anthropology Response Platform (22/10/14 2014). 209. Willer, Liz. "Ebola and the Cultural Influences." healthfig - environmental health case studies (28 October 2014). 210. Wolz, Anja. "Face to Face with Ebola—an Emergency Care Center in Sierra Leone." New England Journal of Medicine 371, no. 12 (2014): 1081-83

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SUPPLEMENTARY MATERIAL C-2: SBS REFERENCES 211. Yakubu, Aminu, Morenike Oluwatoyin Folayan, Nasir Sani-Gwarzo, Patrick Nguku, Kristin Peterson, and Brandon Brown. "The Ebola Outbreak in Western Africa: Ethical Obligations for Care." Journal of medical ethics 42, no. 4 (2016): 209-10

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