Ebola: limitations of correcting misinformation - The Lancet

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Dec 19, 2014 - Guy Brusselle, Andy Bush, Paul Cullinan, Adnan Custovic, Francine Ducharme,. John Fahy, Urs ... 5 Han MK, Tayob N, Murray S, et al. Predictors of .... 3 Oyeyemi SO, Gabarron E, Wynn R. Ebola, Twitter, and misinformation: a.
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Aerocrine, Almirall, Novartis, and GlaxoSmithKline; payment for organising an educational event for SPRs from AstraZeneca; honoraria for attending advisory panels with Almirall, Genentech, Regeneron, AstraZeneca, Boehringer Ingelheim, GlaxoSmithKline, MSD, Schering-Plough, Novartis, Dey, Napp, and Respivert; and sponsorship to attend international scientific meetings from Boehringer Ingelheim, GlaxoSmithKline, AstraZeneca, and Napp. The members of the Lancet Commission on the asthmas are: Gary Anderson, Richard Beasley, Elisabeth Bel, Guy Brusselle, Andy Bush, Paul Cullinan, Adnan Custovic, Francine Ducharme, John Fahy, Urs Frey, Peter Gibson, Liam Heaney, Pat Holt, Marc Humbert, Clare Lloyd, Guy Marks, Fernando Martinez, Ian Pavord, Peter Sly, Erika von Mutius, Sally Wenzel, and Heather Zar. 1

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Guidelines for management of asthma in adults: I—chronic persistent asthma. Statement by the British Thoracic Society, Research Unit of the Royal College of Physicians of London, King’s Fund Centre, National Asthma Campaign. BMJ 1990; 301: 651–53. Levy M, Andrews R, Buckingham R, et al. Why asthma still kills: the National Review of Asthma Deaths (NRAD) Confidential Enquiry report. London: Royal College of Physicians, 2014. Pavord ID, Brightling CE, Woltmann G, Wardlaw AJ. Non-eosinophilic corticosteroid unresponsive asthma. Lancet 1999; 353: 2213–14. Hargreave FE, Nair P. The definition and diagnosis of asthma. Clin Exp Allergy 2009; 39: 1652–58. Han MK, Tayob N, Murray S, et al. Predictors of chronic obstructive pulmonary disease exacerbation reduction in response to daily azithromycin therapy. Am J Respir Crit Care Med 2014; 189: 1503–08.

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Bush A, Pavord ID. Following Nero: fiddle while Rome burns, or is there a better way? Thorax 2011; 66: 367–68. Bush A. Inhaled corticosteroid and children’s growth. Arch Dis Child 2014; 99: 191–92. Sabroe I, Postma D, Heijink I, Dockrell DH. The yin and the yang of immunosuppression with inhaled corticosteroids. Thorax 2013; 68: 1085–87. Pavord ID, Shaw DE, Gibson PG, Taylor DR. Inflammometry to assess airways disease. Lancet 2008; 372: 1017–19. Rosenthal M. CON: encouraging resistance to rule-based medicine is essential to improving outcomes. Thorax 2015; 70: 112–14. Flood-Page P, Swenson C, Faiferman I, et al. A study to evaluate safety and efficacy of mepolizumab in patients with moderate persistent asthma. Am J Respir Crit Care Med 2007; 176: 1062–71. Haldar P, Brightling CE, Hargadon B, et al. Mepolizumab (anti-IL 5) and exacerbations of refractory eosinophilic asthma. N Engl J Med 2009; 360: 973–84. Pavord ID, Korn S, Howarth P, et al. Mepolizumab for severe eosinophilic asthma (DREAM): a multicentre, double-blind, placebo controlled trial. Lancet 2012; 380: 651–59. Corren J, Lemanske RF, Hanania NA, et al. Lebrikizumab treatment in adults with asthma. N Engl J Med 2011; 365: 1088–98. Wenzel S, Ford L, Pearlman D, et al. Dupilumab in persistent asthma with elevated eosinophil levels. N Engl J Med 2013; 368: 2455–66.

Communication and social mobilisation strategies to raise awareness about Ebola virus disease and the risk factors for its transmission are central elements in the response to the current Ebola outbreak in west Africa.1 A principle underpinning these efforts is to change risky “behaviour” related to “traditional” practices and “misinformation”. Populations at risk of contracting Ebola virus disease have been exhorted to “put aside, tradition, culture and whatever family rites they have and do the right thing”.2 Messages designed to correct perceived misunderstandings3 include: “Ebola is caused by a virus. Ebola is not caused by a curse or by withcraft”;4 “science and medicine are our only hope”;5 and “traditions kill”.5 Such messages follow logically from clinical and epidemiological framings of contagion. They pay little attention, however, to the historical, political, economic, and social contexts in which they are delivered. Furthermore, they reinforce external perceptions that local beliefs and practices are barriers to be overcome through persuasion or counterbalanced with incentives.6 Such characterisations have been counterproductive in previous Ebola outbreaks.7 We propose four questions to scrutinise some of the assumptions about current Ebola social mobilisation strategies. First, will improving people’s biomedical knowledge of Ebola lead to desired behaviour changes? Efforts to www.thelancet.com Vol 385 April 4, 2015

change what people do through biomedical information alone can be ineffective. Communicating knowledge about why people should wash their hands with soap, sleep under a bednet, or change their sexual practices is known to be insufficient to induce behavioural changes in practice,8,9 usually because of people’s other priorities. The situation with regard to Ebola seems to be following suit.10 Biomedical information on risk might hold limited relevance to people when trying to care for sick loved ones or attend to the dead. Other approaches that start by addressing people’s priorities need to be considered when attempting to influence health-related activities. Second, should local activities be regarded as “exotic behaviour”? Caring for the sick is an intensely practical endeavour. Public health framings of Ebola, however, often portray caring practices as irrational and immutable traditions.11 This perception reflects a lack of genuine engagement in the material, social, or spiritual implications of changing social practices. In many parts of Sierra Leone, Liberia, and Guinea, burial practices often incorporate procedures to distribute inheritance and ensure the deceased an afterlife. Failing to conduct funerals appropriately may cast family members as negligent, or foster suspicion of malicious causes of death; these concerns can override health considerations.12 To disregard such concerns and take an inflexible stance in negotiating mutually acceptable

Francisco Leong/Staff

Ebola: limitations of correcting misinformation

Health workers from Sierra Leone’s Red Cross Society Burial Team talk with community members before removing a body from a house in Freetown Published Online December 19, 2014 http://dx.doi.org/10.1016/ S0140-6736(14)62382-5

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For the Ebola Response Anthropology Platform see http://www.ebola-anthropology. net/

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courses of action precludes any genuine demonstration of respect or empathy for that person’s situation. Third, how helpful is the message that biomedicine is the most effective way to understand and respond to Ebola? The idea of trying to shift people’s framings away from so-called traditional beliefs is embedded in the public health view of biomedicine as the only valid way to understand and respond to illness. From the perspective of afflicted people, however, the evidence that biomedicine is helping communities affected by Ebola can be hard to discern. Health facilities have been sources of Ebola transmission13 and many patients admitted to treatment centres do not survive. How can trust be established or collaboration developed if local people are expected to accept ideas and practices that do not accord with their own observations and experiences? In the context of a general willingness to adopt multiple modalities to achieve care and wellbeing, safer practices can be adopted without changing people’s core beliefs.14 Fourth, are standardised messages and modes of delivery for public health information about Ebola appropriate? Public health framings generally assume that standardised protocols that deliver “correct” health information through the “right” medium are needed to change behaviour. Protocols are typically developed at national or international levels rather than collaboratively with the people who are expected to change their behaviour. When rolled out rapidly at scale, the standardisation of messages is treated as paramount in country plans; an operational logic that hinges on the use of mass media and rote training of community liaison workers. Such a standardised approach discourages adaptation, prohibits engagement with local social realities, and ignores how people will interpret public health messages according to specific local political and social circumstances. Engagement across communities with flexible protocols that communicate problems, request help in developing local solutions, and enable their implementation are likely to be more effective in changing high risk practices than standardised approaches. As households and communities have made clear when given the chance, what they would like is practical information about risk factors for Ebola transmission and, crucially, how to reduce risks when caring for the sick and burying the dead, as well as the material resources necessary to put this advice into practice.7, 15

As members of the Ebola Response Anthropology Platform, we call on all organisations involved in the response to the Ebola outbreak to question the assumption that biomedicine must correct local logics and concerns, and the effectiveness of using standardised advice for nonstandardised situations. Those tasked with asking people to change practices and activities associated with Ebola transmission should be allowed the time and flexibility to negotiate mutually agreed changes that are locally practical, socially acceptable, as well as epidemiologically appropriate. Resulting approaches to managing the crisis are likely to be diverse but locally sustainable, provided they are developed with respect for local people and their priorities and resourced appropriately. Otherwise, we warn that a focus on correcting “misinformation” could do more harm than good. *Clare Chandler, James Fairhead, Ann Kelly, Melissa Leach, Frederick Martineau, Esther Mokuwa, Melissa Parker, Paul Richards, Annie Wilkinson, for the Ebola Response Anthropology Platform Department of Global Health and Development, London School of Hygiene & Tropical Medicine, London WC1H 9SH, UK (CC, FM, MP); Department of Anthropology, University of Sussex, Falmer, Brighton, UK (JF); Department of Sociology, Philosophy and Anthropology, University of Exeter, Exeter, UK (AK); Institute of Development Studies, Brighton, UK (ML, AW); and School of Environmental Sciences, Njala University, Sierra Leone (EM, PR) [email protected] We declare no competing interests. 1

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WHO, The Governments of Guinea, Liberia, and Sierra Leone. Ebola virus disease outbreak response plan in West Africa, July–December, 2014. Geneva: World Health Organization, 2014. McMahon B. Sierra Leone News: Sierra Leoneans should lead the Ebola fight. Awoko Oct 13, 2014. Oyeyemi SO, Gabarron E, Wynn R. Ebola, Twitter, and misinformation: a dangerous combination? BMJ 2014; 349: g6178. Centers for Disease Control and Prevention. Together we can prevent Ebola. 2014. http://www.cdc.gov/vhf/ebola/pdf/ bannerforebolasierraleonev2.pdf (accessed Dec 11, 2014). The Communication Initiative. Ebola: a poem for the living—video. Oct 21, 2014. http://www.comminit.com/ci-ebola/content/ebola-poem-livingvideo (accessed Dec 11, 2014). Piot P, Muyembe JJ, Edmunds WJ. Ebola in west Africa: from disease outbreak to humanitarian crisis. Lancet Infect Dis 2014; 14: 1034–35. Hewlett B, Hewlett B. Ebola, culture and politics: the anthropology of an emerging disease. Belmont, CA: Wadsworth, 2007. Yoder PS. Negotiating relevance: belief, knowledge, and practice in international health projects. Med Anthropol Q 1997; 11: 131–46. Aboud FE. Virtual special issue introduction: health behaviour change. Soc Sci Med 2010; 71: 1897–900. Fischer M, Kletzing M. Is sensitisation effective in changing behaviour to prevent Ebola transmission? Start Fund Project Case Study. 2014. http:// www.start-network.org/wp-content/uploads/2014/09/Start-Fund-SLEcase-study.pdf (accessed Dec 15, 2014). Jones J. Ebola, emerging: the limitations of culturalist discourses in epidemiology. J Glob Health 2011; 1: 1–6.

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Richards P, Amara J, Ferme MC, et al. Social pathways for Ebola virus disease in rural Sierra Leone, and some implications for containment. PLoS Neglected Tropical Diseases Blog Oct 31, 2014. http://blogs.plos.org/ speakingofmedicine/2014/10/31/social-pathways-ebola-virus-diseaserural-sierra-leone-implications-containment/ (accessed Dec 15, 2014). Forrester JD, Hunter JC, Pillai SK, et al. Cluster of Ebola cases among Liberian and US health care workers in an ebola treatment unit and adjacent hospital—Liberia, 2014. MMWR Morb Mortal Wkly Rep 2014; 63: 925–29.

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Leach MA, Fairhead JR, Millimouno D, Diallo AA. New therapeutic landscapes in Africa: parental categories and practices in seeking infant health in the Republic of Guinea. Soc Sci Med 2008; 66: 2157–67. Anoko JN. Communication with rebellious communities during an outbreak of Ebola virus disease in Guinea: an anthropological approach. 2014. http://www.ebola-anthropology.net/case_studies/communicationwith-rebellious-communities-during-an-outbreak-of-ebola-virus-diseasein-guinea-an-anthropological-approach/ (accessed Dec 11, 2014).

Case Reports in The Lancet: a new narrative

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and the writers of the Case Report is enriching. It offers an opportunity for the authors, sometimes junior doctors or even medical students, to have their worked appraised by experts in the field so that they can revise and improve their submission. This teaching and learning element is not apparent in the final report of 600 words which, by necessity, often leaves out the detailed investigation or slow process of diagnosis, as well as the thoughtful comments of the peer reviewers. On July 4, 2015, to coincide with the start of the next volume of The Lancet and 20 years after the publication of our first Case Report, we will publish the first new style Case Report, which from then on will be published monthly. To allow for fuller description and analysis, the length will be increased to about 1000 words. The report will be accompanied by a Comment from an expert clinician, reflecting on the wider context of clinical practice or further research, and framing the case for the reader as the best clinicians do at bedside teaching. The Lancet aims to support clinicians by providing the best available evidence to inform the best possible practice. The Case Report forms an integral part of medical learning—or to quote Joseph Bell, the inspiration for Arthur Conan Doyle’s Sherlock Holmes, “In teaching the treatment of disease and accident, all careful teachers have first to show the students how to recognise accurately the case. The recognition depends in great measure on the accurate and rapid appreciation of small points in which the diseased differs from the healthy state. In fact, the student must be taught to observe.”

Mary Evans Picture Library

Stories form the basis of how we learn, and how we remember. Throughout history people have interpreted the world around them and passed on lessons learned through myths, fairy tales, parables, and anecdotes. Medicine is no different, and most physicians can describe the first patient they saw with a particular condition more easily than they can recall the latest research paper in their field. William Osler, widely revered as the father of modern medicine,1 instructed “Ask not what disease the person has, but rather what person the disease has.” The Lancet published its first Case Report in 1995, having announced the new section in a Comment titled “Learning from stories”. The aim was to give “an opportunity for clinicians to relay the sort of clinical anecdote they might tell colleagues during a morning coffee break”, and publish reports with “a striking message: a description of a new treatment, adverse effect of medication, evidence that might suggest a new mechanism for a disease process, or a new intervention”.2 Over the years, the Lancet Case Report has changed. We no longer publish cases that amount to a trial of treatment or intervention in only one patient. Adverse drug reactions are published in the Correspondence section. With increasing opportunities for investigation and detailed analysis, the evidence that might suggest a new mechanism of disease is often published in a web appendix, as are the extra images, molecular profiles and genetic tests, and videos. The Case Report has evolved to describe an unusual presentation of a common disease or a rare cause of a common presentation, if not something completely novel. The ideal Case Report will have an unexpected twist or detective element, is engagingly written, and has a learning point for a general medical audience. Like all clinical content in the journal, Case Reports are peer reviewed. The interaction between the peer reviewer

Philippa Berman, Richard Horton The Lancet, London EC2Y 5AS, UK 1 2

Becker RE. Remembering Sir William Osler 100 years after his death: what can we learn from his legacy? Lancet 2014; 384: 2260–63. Bignall J, Horton R. Learning from stories—The Lancet’s Case Reports. Lancet 1995; 346: 1246.

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