Implementing 'self-help friendliness'

Health Promotion International Advance Access published December 10, 2014 Health Promotion International doi:10.1093/heapro/dau103

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Implementing ‘self-help friendliness’ in German hospitals: a longitudinal study ALF TROJAN, STEFAN NICKEL* and CHRISTOPHER KOFAHL

SUMMARY In Germany, the term ‘self-help friendliness’ (SHF) describes a strategy to institutionalize co-operation of healthcare institutions with mutual aid or self-help groups of chronically ill patients. After a short explanation of the SHF concept and its development, we will present findings from a longitudinal study on the implementation of SHF in three German hospitals. Specifically, we wanted to know (i) to what degree SHF had been put into practice after the initial development phase in the pilot hospitals, (ii) whether it was possible to maintain the level of implementation of SHF in the course of at least 1 year and (iii) which opinions exist about the inclusion of SHF criteria in quality management systems. With only minor restrictions, the findings provide support for the usefulness, practicability,

sustainability and transferability of SHF. Limitations of our empirical study are the small number of hospitals, the above average motivation of their staff, the small response rate in the staff-survey and the inability to get enough data from members of self-help groups. The research instrument for measuring SHF was adequate and fulfils the most important scientific quality criteria in a German context. We conclude that the implementation of SHF leads to more patient-centredness in healthcare institutions and thus improves satisfaction, self-management, coping and health literacy of patients. SHF is considered as an adequate approach for reorienting healthcare institutions in the sense of the Ottawa Charta, and particularly suitable for health promoting hospitals.

Key words: self-help friendliness; self-help groups; health promoting hospitals; reorienting health services

INTRODUCTION The fifth key action area ‘reorient health services’ of the Ottawa Charta from 1986 addresses the health promotion in health services as a shared responsibility among individuals, community groups, health professionals, health service institutions and governments, and postulates that these ‘must work together towards a health care system which contributes to the pursuit of health’ (www.who.int/ healthpromotion/conferences/previous/ottawa/en). However, more than two decades later, De Leeuw (De Leeuw, 2009) reasons that health services have not reoriented at all, and concludes that ‘the

discourse on further reorientation of health services [. . .] should clearly be continued, especially in the health promotion community’ (p. 107). Comparably critical comments can be found in the reflections of Ziglio et al. (Ziglio et al., 2011) who assess the fifth Ottawa key action area as an ‘unfinished business’. On the other hand, ‘voluntary and self-help organisations’ as mentioned in the WHO’s strategy Health 2020 (WHO, 2012, section No. 51; cf. No. 21, p. 5 and No. 19, p. 5) have increasingly become an acknowledged actor in changing and improving health services (Baggott and Forster, 2008). They are the organized, but non-professional counterpart

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Department of Medical Sociology, University Medical Center Hamburg-Eppendorf, Martinistraße 52, D-20246 Hamburg, Germany *Corresponding author. E-mail: [email protected]

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THE CONCEPT ‘SHF’ AND ITS INSTITUTIONALIZATION IN GERMANY In Germany, SHGs, the support system for SHGs, and patient participation and involvement have reached a considerably high standard

(Matzat, 2006 –2007; Kofahl et al., 2014). The number of SHGs increased up to 100 000 with 3 million members (ca. 3.5% of the German population), the vast majority of them regional face-to-face groups. In addition, the self-help sector is supported by a nationwide self-help supporting infrastructure consisting of 290 self-help clearinghouses plus 49 smaller self-help offices (NAKOS, 2013). The collaboration with SHGs is considered a crucial instrument to foster patient participation and involvement in the German healthcare system (Loh et al., 2007; Matzat, 2013; Kofahl et al., 2014). The further development and growth of selfhelp and self-help support in the last decades is the context in which SHF was started as an approach of sustainable integration of self-help associations into health services. Concerning the latter ones, the hospital sector was the first area in which eight quality criteria for SHF were developed in 2004. The initial project was conducted in Hamburg, Northern Germany, and led to a consensus document that was developed and approved by self-help group members, representatives of the local self-help clearinghouse and quality managers from three hospitals (Bobzien, 2008). The quality criteria for hospitals read as follows: (i) The hospital offers rooms, infrastructure and possibilities for public relations. (ii) Patients of the hospital are personally informed about self-help on a regular basis. (iii) The hospital supports public relations of the self-help group. (iv) The hospital appoints a staff member as a contact person for self-help. (v) Staff and self-help group members meet regularly for information exchange. (vi) Self-help groups are involved in further education/training of staff. (vii) Self-help groups are involved in professional working groups such as quality circles and ethical committees. (viii) The collaboration is formally agreed upon and the activities will be documented. The first three criteria shall ensure that information on self-help is available for all patients. The next five criteria aim at systematic and sustainable patient involvement and participation. The integration of these quality criteria into the internal quality management of healthcare institutions is crucial for sustainability. After this last step, an institution can be awarded a certification

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of professional carers. In Germany, the most common collective term for these groups is ‘Selbsthilfegruppen’ (self-help groups or SHGs). In the following, we use ‘SHG’ as a synonym for ‘mutual help’, ‘mutual aid’ or ‘support group’, for all self-help associations, and all types of patient groups/organizations. Emphasizing the relevance of collaboration between professional services and these groups has a long tradition (Hatch and Kickbusch, 1983; Borkman, 1990). More recently, patient involvement, respectively, user or public involvement have become key concepts for closer collaboration and a stronger voice of patients in health services. These concepts are widely discussed as promising approaches to improve the quality and responsiveness of healthcare services (Conklin et al., 2010). Corresponding key notions for enhancing the quality of healthcare systems are ‘patient participation’, ‘patient integration’ and ‘patient centredness’ (Taylor, 2009). Although these similar concepts differ slightly in definitions and emphasis of their approaches, most literature concordantly concludes that closer collaboration with patients is highly relevant for quality improvement in healthcare provision at the individual level, the institutional level and the system level (Institute of Medicine, 2001; Rabeharisoa, 2003; Baggott and Forster, 2008). Yet, the realization of such co-operation usually lacks a systematic approach to sustainable institutionalization. The concept of self-help friendliness (SHF) is a new development to foster collaborative interaction between healthcare institutions and patients ‘on the collective level’ (Forster and Gabe, 2008). A self-help friendly healthcare institution is characterized by a formally implemented co-operation with SHGs of chronically ill patients. As the implementation implies structural changes of healthcare institutions, we also consider our paper as a contribution to the debate on reorienting health services. After a short explanation of the SHF concept, and its context and development in Germany, we will provide and discuss findings from a longitudinal study on the implementation of SHF in three German hospitals.

Implementing ‘self-help friendliness’ in German hospitals

– First, the German social insurance system has established substantial support measures for self-help groups and their systematic support by self-help clearinghouses (Geene et al., 2009). – Secondly, since 2004, Germany is pursuing a general policy (including legal provisions) for more patient centredness and, especially, the participation on the federal level in working groups of the ‘Federal Joint Committee of Physicians and Statutory Health Insurances’ (Matzat, 2006/2007; www.g-ba.de). – Thirdly, in 2009, the German Network ‘Selfhelp Friendliness and Patient Centredness in the Health Care System’ was founded (www. selbsthilfefreundlichkeit.de). This network pursues a nationwide strategy to promote the

co-operation between healthcare professionals and self-help groups by developing and disseminating training materials, conducting and supporting pilot projects, and by integrating self-help friendly criteria into quality management and accreditation programmes (www. selbsthilfefreundlichkeit.de). Finally, we have to stress that the dissemination of SHF in Germany (Nickel et al., 2012; Trojan et al., 2013; Kofahl et al., 2014) did not follow a comprehensive ‘master plan’. Based on a partnership ‘philosophy’ in an action research framework (Nelson et al., 1998), the process is better described as a step-by-step development of cooperating self-help representatives, professional self-help supporters, social scientists and staff from both healthcare insurances and healthcare institutions. RESEARCH QUESTIONS AND METHODS In this paper, we will show and discuss results from a longitudinal quantitative survey in three hospitals in Hamburg, Northern Germany, conducted between January 2009 and June 2011. Two of these were ‘pilot’ hospitals whose managerial staff agreed to participate in the development of SHF already in 2004. Between 2005 and 2008, they took part in identifying and defining the above-mentioned eight quality criteria and how to put them into practice. After a self-assessment according to the ‘Plan-Do-Check-Act’ cycle and a following formal audit consisting of eight SHG-representatives and two self-help supporters, the pilot hospitals A and B received a certification (‘quality seal’) as ‘self-help friendly health care institutions’ by the Hamburg clearinghouse for self-help in 2006 (Bobzien, 2008). A few months later Hospital C adopted the quality criteria as well, however ‘invested’ less effort in implementing the strategy, and thus did not run through the certification procedure. In January 2008, we started a research project to test the criteria, their acceptability and the sustainability of SHF. In this paper, we focus on the following research questions of this study: – To which extent did the three pilot hospitals implement SHF after the initial development phase? (feasibility) – Was it possible to maintain the level of integration of SHF in the course of 12–15 months? (sustainability)

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which is based on a self-assessment confirmed by the collaborating self-help groups. Until the beginning of 2014, 18 hospitals had completely put the quality criteria into practice. The second area in which SHF criteria have been developed is the ambulatory care sector. A cross-sectional survey among moderators of quality circles of doctors in ambulatory care showed a large willingness of office-based physicians to co-operate with patient groups (Nickel et al., 2012). A pilot project was successfully completed, but only few practices showed interest to adopt the approach. Thus, a second pilot project is planned to develop a more promising approach which will be related to new care concepts and organizational forms (e.g. integrated healthcare or medical care centres). In the third area, the in-patient rehabilitation sector, a successful pilot project with two rehabilitation hospitals has just been completed. Finally, specific SHF criteria for public health departments, as the fourth area, were defined and published (Trojan and Nickel, 2011). In total, 17 hospitals, 10 practices and 2 rehabilitation hospitals were awarded a certification as selfhelp friendly healthcare institutions so far. More than 140 regional self-help groups, 40 self-help organizations and 15 regional self-help clearinghouses participated in the development and implementation of SHF (www.selbsthilfefreundlichkeit.de). Considering that participation was voluntary, these figures are indicative of the acceptability of the SHF approach. On the whole, however, the dissemination of the concept is still in the beginning. At least three characteristics of the German healthcare system have facilitated the present state of development and implementation:

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– Which opinions exist about the inclusion of SHF criteria in quality management systems? (acceptability)

Research instrument As there was no instrument available for the measurement of SHF, we had to develop a new questionnaire. For this purpose, we conducted a qualitative study, comprising three parts: (i) expert interviews with 8 doctors, 3 psychologists, 12 nurses and 10 contact persons of co-operating self-help groups, (ii) group discussions within the Hamburg working group ‘Network Self-helpfriendly Hospital’, and (iii) literature search and analysis (Trojan et al., 2009). These were the basis for defining and operationalizing the criteria for ‘self-help-oriented’ patient-centredness (SelP-K). The resulting questionnaire SelP-K consists of 22 standardized and four open-ended questions plus four socio-demographic items (Nickel, 2012). The questionnaire can be answered by any staff member as it is independent from qualification or position of staff. The core of 22 standardized statements (see Appendix) covers four dimensions of self-help-oriented patient-centredness (a-values are calculated on the data basis of the study as described below): A: informing patients (four items) (a ¼ 0.85) B: involving patients (four items) (a ¼ 0.72) C: empowering patients (four items) (a ¼ 0.81) D: involving self-help groups (10 items) (a ¼ 0.93) All 22 items have the same four-point answer scale: very true—rather true—rather not true— not true at all. Additionally, users can tick the box ‘cannot assess’. Dimensions A to C represent SHF on the individual level. The dimension D ‘involving self-help groups’ measures collaboration on the collective level and fully includes

Recruitment and data collection Respondent recruitment was carried out by our contact persons in the hospitals (i.e. the quality manager and/or self-help agent) who personally distributed and collected all questionnaires. For data protection and confidentiality, the participants administered the questionnaires anonymously, put them in closed envelopes which were collected and then sent to the evaluating department. In the first survey (t1), 189 out of 650 employees participated (overall response rate: 29%), in the follow-up study (t2), we had a response rate of 151 out of 644 (23%). Response rates differed between the three hospitals: A: 48/50%, B: 23/ 20%, C: 41/25%. In Hospitals A and B, the response rates were relatively constant because of the good and long-lasting co-operation with the quality managers. Hospital C consisted of more departments than A and B which increased the complexity in co-operation and procedures, and thus reduced the response rate at t2 compared with t1. Fifty-four per cent of all participants were working in a psychiatric ward, 64% were women, 78% worked in the nursing service and 54% were between 30 and 49 years old. Data analysis Mainly descriptive analyses were performed using frequency distributions, cross tables and mean comparisons. The psychometric testing was based on methods of classical test theory. In addition, statistical significance was calculated to detect differences by hospital, time and/or individual characteristics of the respondents (i.e. age, sex, medical speciality, occupational group). To analyse the open-ended questions of the survey, we used quantitative content analysis.

RESULTS/FINDINGS As the focus of this paper is on the collective level of SHF, we only present results concerning scale D ‘involving self-help groups’. In the complementary survey on the collaborating self-help

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The study had two measure points at intervals of 12 (Hospital A) to 15 (Hospitals B and C) months (Nickel, 2012). The first data collection started about 2.5 years after the certification in 2006. In all hospitals, only those medical departments were involved which actively co-operated with SHGs (Hospital A: rheumatology and psychiatry: B: five psychiatric departments; C: paediatrics, otorhinolaryngology, gynaecology, obstetrics). The comprehensive survey included all doctors and nurses of these 11 participating departments. Additionally, we tried to encompass the collaborating SHGs as well.

the quality criteria of SHF as mentioned above (two more items were needed to cover all aspects of the eight criteria). Every dimension is transformed to a scale from ‘0’ for not true at all to ‘100’ for very true over all items of the relevant dimension.

Implementing ‘self-help friendliness’ in German hospitals

groups, however, only 73 members of SHGs participated in total, which turned out to be too small for quantitative analysis. At least, the reported views of patients did not contradict with the hospital staff survey.

Sustainability of SHF over time In the follow-up survey 12 –15 months after t1, the first results were largely confirmed. Table 2 shows the differences between t2 and t1 for the positive answers to the dimension ‘involving self-help groups’. The strongest improvements were observed in Hospital C. This is the hospital which did not participate in the development phase of ‘SHF’ in the period 2004 –2006, and had lower baseline figures. The improvements comprise both indirect types of co-operation (e.g. the knowledge about the spokespersons of co-operating self-help groups: þ15 percentage points) and direct types (e.g. integration of cooperation with self-help groups in treatment paths, corporate vision or similar documents: þ20). Hospitals A and B show little change over time due to a moderate ceiling effect based on higher values in t1. Solely in some aspects, small ‘improvements’ could be measured (e.g. involving self-help groups in team meetings and/or plans to improve quality; see Hospital A). The three largest ‘deteriorations’ affect the visibility of the spokespersons of co-operating self-help groups (Item 6; Hospital A), knowledge

of the assigned permanent representative for self-help affairs (Item 5; Hospital B), involvement in team meetings etc. (Item 9; Hospital B). However, the overall picture in Hospitals A and B is positive; both had negative trends in only 2 out of 10 statements (whereas +2 is still in the range of a measurement error). Perceived benefits of integrating SHF into quality management In an open-ended question, staff was asked to give their personal opinions about the implementation of SHF in the quality management system of their hospital. A few negative opinions (13) were mentioned, but no clear picture emerged about their focus. We have categorized the positive comments (190) as shown in Figure 1. Sixty-nine per cent of them refer to the ‘improved quality of care’ section (upper part of Figure 1).

DISCUSSION AND CONCLUSIONS In the first part, we will discuss SHF as a key concept for building partnerships with patient groups [especially in the context of ‘health promoting hospitals’ (HPH)] in the light of our main findings. The second part will address limitations of our study. Relevance of the SHF concept and its implementation Practicability of the quality criteria for collective SHF A decisive element of the approach is the operationalization of good practice through eight quality criteria (see the Introduction section). In the first survey, staff of the three hospitals assessed the degree to which good collaboration had been put into practice. The relevant items were agreed upon from 13 to 95%. The most plausible explanation for these findings is based on the participative process in which the criteria were developed: in 2005, 30 self-help organizations and 20 self-help clearinghouses, who already had gained experience with self-help-hospitalcollaboration, participated in an explorative study on self-help involvement in hospitals (Werner et al., 2006). Based on their answers, both selfhelp stakeholders and three hospital quality assurance managers produced the eight criteria for

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Implementation of the various criteria of self-help-friendliness Table 1 shows the results of the first assessment (t1). For these purposes, the two positive response categories of the four-point scale (‘very true’ and ‘rather true’) were pooled into one category. On the whole, we see that those types of co-operation requiring ‘direct’ contacts between personnel and members of self-help groups usually are rated less positive (Items 7 and 9). For the criteria of ‘indirect’ collaboration (Items 1–3, 5, 6) with few exceptions, we find moderate to very positive assessments. Hospital A, which has already been the hospital with the longest experience in co-operation with self-help groups, achieved the best scores in all statements. However, as Hospital C began last with the implementation of SHF criteria, it is not unexpected that it comes up to comparatively lower assessments at t1.

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Table 1: Criteria of SHF assessed by staff of three self-help friendly hospitals at t1 (‘very true’ and ‘rather true’ in per cent) Items of the dimension ‘involving self-help groups’

Overall (n ¼ 189)

A (n ¼ 20)

B (n ¼ 97)

C (n ¼ 72)

67

95

69

52

,0.001

65

90

68

53

,0.001

56

89

51

54

,.001

63

81

66

50

,0.001

72

89

76

57

,0.001

54

84

51

47

,0.01

39

78

33

33

,0.01

40

74

40

28

,0.001

18

33

19

13

n.s.

53

82

65

21

,0.001

n.s., not significant. Kruskal–Wallis H-test.

a

SHF which also became part of the scale D (‘involving self-help groups’) in our questionnaire (see Appendix). Sustainability of SHF The longitudinal part of our study suggests that SHF could be maintained over more than 1 year in the researched institutions. However, no statements can be made about the sustainability over a longer period. Our results about organizational sustainability are backed by Ro¨thlin et al. (Ro¨thlin et al., 2013) who analysed the PRICES-HPH study in respect of necessary criteria to build organizational capacities for health promotion. Four organizational structures were significantly associated with more elaborate health promotion implementation strategies. All of them resemble some of the quality criteria of SHF (coordinator, part of officially documented institutional policies, team approach). The fourth one seems to us the most important for sustainability: a specific quality assessment routine. The full process of becoming a self-help friendly hospital requires the integration of quality criteria into the internal quality management and thus, a yearly routine

of checking setbacks and progress in terms of the criteria. Transferability of the approach In part 2 of our paper, we have presented some evidence of transferability concerning health service institutions in Germany. International transferability seems to pose no problems in Austria: With reference to the first German pilot project in Hamburg, similar initiatives of SHF have come into existence in 40 Austrian hospitals (Forster and Rojatz, 2011; Forster et al., 2013). This is indicative of international transferability in comparable contexts. The question under which circumstances and with which modifications SHF could be used for quality improvement and healthcare reforms in other countries needs further research. These research desiderata have also been brought forward in the UK (Baggott and Jones, 2011). Nowadays, the necessity of patient-centredness and patient involvement is widely agreed upon (see the Introduction section). However, there is no single model that could easily be transferred from one country to the other. The German experience suggests that self-help and consumer

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1. Self-help groups can use presentation facilities, rooms and office facilities of the hospital 2. Patients and/or their relatives will be personally informed about self-help groups on a regular basis 3. Patients and/or their relatives will be informed about self-help groups with written information material on a regular basis 4. The relevant ward and/or the hospital support self-help groups with their public relations 5. The relevant ward and/or the hospital has a permanent assigned representative for self-help affairs 6. The spokespersons of co-operating self-help groups are known in the ward and/or hospital 7. There is a regular information exchange between self-help groups and the relevant ward and/or hospital 8. Hospital staff is informed about the collaboration with self-help groups 9. Self-help groups are involved in team-meetings and/or quality management 10. The collaboration with self-help groups is recorded in treatment pathways, corporate vision or similar documents

p-valuea

Hospital

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Table 2: Change of staff assessed criteria of SHF over time: percentage point difference t22t1 for ‘very true’ and ‘rather true’ (n ¼ t1/t2) Items of the dimension ‘involving self-help groups’

Overall p-valuea A p-valuea B p-valuea C p-valuea (n ¼ 189/151) (n ¼ 20/21) (n ¼ 97/75) (n ¼ 72/55) þ7

0.06

þ5

n.s.

þ13

0.07

26

n.s.

þ1

n.s.

þ4

n.s.

1

n.s.

22

n.s.

þ8

n.s.

þ1

n.s.

þ12

n.s.

þ2

n.s.

þ3

n.s.

0

n.s.

21

n.s.

þ11

n.s.

þ1

n.s.

þ3

n.s.

28

n.s.

þ15

,0.05

þ4

n.s.

211

0.09

22

n.s.

þ18

,0.05

þ5

n.s.

27

n.s.

þ5

n.s.

þ10

n.s.

þ11

,.05

þ14

n.s.

þ7

n.s.

þ15

,0.05

þ3

n.s.

þ14

n.s.

28

0.06

þ13

n.s.

þ7

n.s.

þ6

n.s.

22

n.s.

þ20

,0.05

n.s., not significant. a Mann–Whitney U-test.

groups can have their place in different models of the development of partnerships between ‘patients’ and ‘professionals’ in the light of quality improvement of health services. Usefulness of the SHF concept and approach in the context of HPHs The open-ended questions in our survey provided a coherent picture of what was considered the benefit of SHF and its integration into quality

management: about two-thirds of the opinions referred to some kind of improvement of the treatment and aftercare quality of patients. This is one of the strongest arguments for the general usefulness of the approach. In their reflections on reorienting health services, Wise and Nutbeam [(Wise and Nutbeam, 2007), p. 26] make a strong case for ‘partnerships with the communities we want to serve’ and summarize the usefulness of patient organizations as allies for change. A review of Aglen et al. (Aglen et al., 2011)

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1. Self-help groups can use presentation facilities, rooms and office facilities of the hospital 2. Patients and/or their relatives will be personally informed about self-help groups on a regular basis 3. Patients and/or their relatives will be informed about selfhelp groups with written information material on a regular basis 4. The relevant ward and/or the hospital support self-help groups with their public relations 5. The relevant ward and/or the hospital has a permanent assigned representative for self-help affairs 6. The spokespersons of co-operating self-help groups are known in the ward and/or hospital 7. There is a regular information exchange between self-help groups and the relevant ward and/or hospital 8. Hospital staff is informed about the collaboration with self-help groups 9. Self-help groups are involved in team-meetings and/or quality management 10. The collaboration with self-help groups is recorded in treatment pathways, corporate vision or similar documents

Hospital

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Fig. 1: Positive comments on the integration of SHF into the QM system of hospitals (in per cent of 190 statements from 152 respondents).

underpinned the interest of self-help groups for people with long-lasting health problems to improve the professional healthcare system.

The central documents of the international Network of Health Promoting Hospitals and Services refer to self-help as a resource and part

Implementing ‘self-help friendliness’ in German hospitals

Limitations of the research instrument and the empirical study Although there was a wide variety of persons, subgroups and units included in the study, it

cannot be regarded as being representative neither for the participating self-help groups nor for the hospital sector and the involved staff. Low response rates are one important reason. Unfortunately, our research was not extensive enough to allow conclusive explanations of variations between and within hospitals. Additionally, we have to assume that the participating hospital staff was motivated above average to collaborate with self-help groups. Another notable shortcoming is the unilateral focus on the staff’s point of view. Although we made a strong effort to include the patients’ perspective (with a corresponding questionnaire), we did not reach enough members of collaborating self-help groups for a quantitative analysis. In order to cope with these shortcomings, future research should also include qualitative methods, such as focus groups or guideline-based interviews with patients. CONCLUSIONS SHF is an approach to institutionalize sustainable carer– patient relationships on the collective level. Although we can show perceived improved aftercare as a main benefit, there is no conclusive evidence that this measurably results in better patients’ health outcomes. Nevertheless, there is a cogent plausibility that healthcare institutions will re-adapt their procedures to patient needs and thereby improve patient satisfaction, selfmanagement skills, coping and health literacy. Some empirical studies are even indicative of better health outcomes in patient-centred institutions (Isaac et al., 2010; Meterko et al., 2010), what can be regarded as an indirect argument for the health benefits generated through SHF. The faith in health benefits is supported by the staff views expressed in the open-ended questions: two-thirds of them expected treatment and aftercare improvements. Hospital boards and quality managers like the ‘positive side effect’ that patient centredness even may reduce costs of running the services (Charmel and Frampton, 2008). The findings of our study demonstrate that implementation of the criteria is feasible and that results can be sustained at least over more than 1 year. However, there is variation in hospitals in acceptance of various aspects of SHF. This needs further studies. The research instrument for measuring SHF was adequate and fulfils the most important

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of the strategy (Budapest Declaration 1991; Vienna Recommendations 1997, 18 HPH core strategies, standards for self-assessment; cf. Groene, 2006; Pelikan et al., 2010, 2011). However, which roles they could fulfil and how to implement sustainable co-operation with them is not dealt with. Forster et al. (Forster et al., 2013) summarized empirical data on the reality of collaboration with self-help groups in the HPH network. They conducted a secondary analysis of the ‘Project on a Retrospective, Internationally Comparative Evaluation Study of HPH’ (PRICES-HPH) (180 hospitals ¼ response rate 34%). Forty-four per cent of the European member hospitals co-operated ‘largely’ to ‘completely’ with selfhelp groups, only 16% did so ‘rarely’ or ‘not at all’. Another survey with 30 national network coordinators (response rate 38%) showed big differences in the forms of co-operation and revealed that formal agreements on the integration in organizational processes were usually an exception both on the network level and in the member institutions [(Forster et al., 2013), p. 12). In a systematic comparative overview, the same authors convincingly demonstrate the compatibility and even similarity of the SHF approach with the general strategies of HPHs. In a review on the effectiveness of HPHs, McHugh et al. [(McHugh et al., 2010), p. 235] identify partnerships as one of the key themes. They highlight the study of Polluste et al. (Polluste et al., 2007) who found that 72% of HPH managers reported co-operation with patient organizations such as diabetes and cancer societies, but only 33% of managers in non-HPH. In summary, we can say that in HPH contexts—looking at standards and contacts—there is a good basis for partnerships with self-help, but formally fixed collaboration procedures and structures are rarely to be found. We agree with Forster et al. (Forster et al., 2013) who consider self-help groups and HPHs ‘a promising alliance for health’. The spreading of the SHF approach in Germany (Trojan et al., 2012) and Austria (Forster and Rojatz, 2011) would not have been possible without the firm conviction that this approach is useful for better performance of health services in terms of patient centredness.

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ACKNOWLEDGEMENTS The authors would like to thank Prof. Rudolf Forster, Vienna, for his helpful comments on an earlier draft of our paper. Our thanks also go to two anonymous reviewers whose valuable comments helped us to improve this manuscript.

FUNDING The project had the title ‘Quality concept “Selfhelp friendly Hospital” as an approach of patientcentred and participatory health care: development and testing of instruments for improved co-operation between patients and hospitals’ and was funded by the Federal Ministry of Education and Research (funding code 01GX0748). The project did not pose ethical problems according to the Ethics Committee of the Medical Association Hamburg.

REFERENCES Aglen, B., Hedlund, M. and Landstad, B. J. (2011) Self-help and self-help groups for people with long-lasting health problems: a review. Scandinavian Journal of Public Health, 39, 813– 822. Baggott, R. and Forster, R. (2008) Health consumer and patients’ organizations in Europe. Health Expectations, 11, 85–94. Baggott, R. and Jones, K. L. (2011) Prevention better than cure? Health consumer and patients’ organisations and public health. Social Science and Medicine, 73, 530–534. Bobzien, M. (2008) Selbsthilfefreundliches Krankenhaus— auf dem Weg zu mehr Patientenorientierung. Ein Leitfaden fu¨r interessierte Krankenha¨user (Self-Help Friendly Hospital—An Approach Towards More Patient Centredness. A Guideline for Interested Hospitals). BKK Bundesverband, Essen. Borkman, T. (1990) Self-help groups at the turning point: emerging egalitarian alliances with the formal health care system? American Journal of Community Psychology, 18, 321–332. Charmel, P. A. and Frampton, S. B. (2008) Building the business care for patient-centered care. Healthcare Financial Management, 62, 80–85. Conklin, A., Morris, Z. S. and Nolte, E. (2010) Involving the Public in Health Care Policy. RAND Corporation, Santa Monica. De Leeuw, E. (2009) Editorial: Have the health services reoriented at all? Health Promotion International, 24, 105–107. Forster, R. and Gabe, J. (2008) Voice or choice? Patient and public involvement in the National Health Service. International Journal of Health Services, 38, 333–356. Forster, R. and Rojatz, D. (2011) Selbsthilfegruppen als Partner der Gesundheitsfo¨rderung im Krankenhaus (Self-Help Groups as Partner in Health Promotion in Hospitals). University of Vienna, Department for Sociology: Research report. Forster, R., Rojatz, D., Schmied, H. and Pelikan, J. (2013) Selbsthilfegruppen und Gesundheitsfo¨rderung im Krankenhaus—eine entwicklungsfa¨hige Allianz fu¨r Gesundheit (Self-help groups and health promotion in hospitals—promising alliance for health). Pra¨vention und Gesundheitsfo¨rderung, 8, 9 –14. Geene, R., Huber, E., Hundertmark-Mayser, J., Mo¨ller-Bock, B. and Thiel, W. (2009) Development, situation and perspective of self-help support in Germany (in German). Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz, 52, 11– 20. Groene, O. (ed.) (2006) Implementing Health Promotion in Hospitals: Manual and Self-Assessment Forms. WHO Regional Office for Europe, Copenhagen. Hatch, S. and Kickbusch, I. (eds) (1983) Self-help and Health in Europe. New Approaches in Health Care. WHO, Copenhagen. Institute of Medicine (IOM) (2001) Crossing the Quality Chasm: A New Health System Fort the 21st Century. National Academy Press, Washington, DC. Isaac, T., Zaslavsky, A. M., Cleary, P. D. and Landon, B. E. (2010) The relationship between patients’ perception of care and measures of hospital quality and safety. Health Services Research, 45, 1024– 1040. Kickbusch, I. and Trojan, A. (eds) (1981) Gemeinsam sind wir sta¨rker. Selbsthilfegruppen und Gesundheit

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quality criteria in the German context. Scale D in the Appendix indicates the subscales and their operationalization. We think that this information may be valuable for those who want to establish new partnerships between self-help groups and the professional health sector. For this purpose, it may be reasonable to adapt the instrument to other contexts. Our searches in international literature and, specifically, the HPH context did not reveal any general approaches and concepts for systematic and sustainable partnerships between self-help groups and professional institutions (Forster et al., 2013; Kofahl et al., 2014). The normative documents, however, of both WHO and its HPH programme stress the importance of this strategy for health promotion. This is probably also well founded in the background and early interests in self-help of key persons such as Ilona Kickbusch already in the years before the Ottawa Charta (Kickbusch and Trojan, 1981; Hatch and Kickbusch, 1983). SHF offers an elaborated concept and systematic approach which seems particularly suited for the network of HPHs and services in order to contribute and to enhance quality standards in patient-centred care. In this sense, it can be regarded as a stimulus for and as an essential component of reorienting health services.

Implementing ‘self-help friendliness’ in German hospitals

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APPENDIX Questionnaire on self-help-related patientcentredness (SelP-K) Scaling: very true—rather true—rather not true—not true at all A: Informing patients – Patients are informed about their disease according to their needs – Patients are informed about the pros and cons of different treatment options – The information about treatment is understandable and if necessary explained with pictorial representations – The course of treatment or further action is discussed in detail with the patient

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(Together we are stronger. Self-help groups and health). Fischer, Frankfurt/M. Kofahl, C., Trojan, A., Knesebeck, O. V. D. and Nickel, S. (2014) Self-help friendliness: a German approach for strengthening the cooperation between self-help groups and health care professionals. Social Science and Medicine, doi:10.1016/j.socscimed.2014.06.051. [Epub ahead of print]. Loh, A., Simon, D., Bieber, C., Eich, W. and Ha¨rter, M. (2007) Patient and citizen participation in German health care—current state and future perspectives (in German). Zeitschrift fu¨r a¨rztliche Fortbildung und Qualita¨t im Gesundheitswesen, 101, 229–235. Matzat, J. (2006–2007) Selp-help/mutual aid in Germany— a 30 year perspective of a participant observer. International Journal of Self-Help and Self Care, 5, 279–294. Matzat, J. (2013) Self-help meets science: patient participation in guideline development (in German). Zeitschrift fu¨r Evidenz, Fortbildung und Qualita¨t im Gesundheitswesen, 107, 314–319. McHugh, C., Robinson, A. and Chesters, J. (2010) Health promoting health services: a review of the evidence. Health Promotion International, 25, 230– 237. Meterko, M., Wright, S., Lin, H., Lowy, E. and Cleary, P. D. (2010) Mortality among patients with acute myocardial infarction. Health Services Research, 45, 1188– 1204. ¨ berblick 3. Daten und NAKOS (ed.) (2013) Selbsthilfe im U Fakten 2011/12 (Self-help in an overview 3. Data and facts 2011/2012). NAKOS, Berlin. Nelson, G., Ochocka, J., Griffin, K. and Lord, J. (1998) ‘Nothing about me, without me’: participatory action research with self-help/mutual aid organizations. American Journal of Community Psychology, 26, 881 –912. Nickel, S. (2012) Entwicklung eines Messinstruments fu¨r die partizipative, patientenorientierte Versorgungsgestaltung im Krankenhaus am Beispiel der Selbsthilfe (Development of a measurement for participative, patient-centred care management in hospitals—the example ‘self-help’). In Trojan, A., Bellwinkel, M., Bobzien, M., Kofahl, C. and Nickel, S. (eds), Selbsthilfefreundlichkeit im Gesundheitswesen (Self-Help Friendliness in Health Care). Wirtschaftsverlag NW, Bremerhaven, pp. 79–98. Nickel, S., Trojan, A. and Kofahl, C. (2012) Increasing patient centredness in outpatient care through closer collaboration with patient groups? Health Policy, 107, 249–257. Pelikan, J. M., Schmied, H. and Dietscher, C. (2010) Pra¨vention und Gesundheitsfo¨rderung im Krankenhaus (Prevention and health promotion in hospitals). In Hurrelmann, K., Klotz, T. and Haisch, J. (eds), Lehrbuch Pra¨vention und Gesundheitsfo¨rderung (Text Book Prevention and Health Promotion). Verlag Hans Huber, Bern, pp. 290–301. Pelikan, J. M., Gro¨ne, O. and Svane, J. K. (2011) The international HPH network—a short history of two decades of development. Clinical Health Promotion, 1, 32– 36. Polluste, K., Alop, J., Groene, O., Harm, T., Merisalu, E. and Suurorg, L. (2007) Health-promoting hospitals in Estonia: what are they doing differently? Health Promotion International, 22, 327– 336. Rabeharisoa, V. (2003) The struggle against neuromuscular diseases in France and the emergence of the partnership model of patient organisation. Social Science and Medicine, 57, 2127–2136. Ro¨thlin, F., Schmied, H. and Dietscher, C. (2013) Organizational capacities for health promotion

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A. Trojan et al.

B: Involving patients – – – –

The patients are asked whether they agree with the planned treatment Concerns and wishes of the patients with respect to their disease are taken seriously Patients are encouraged to express their opinion about the medical treatment and care (e.g. during the ward round or with opinion cards) Patients are encouraged by doctors and nurses to participate actively in the recovery process

– – – –

C: Empowering patients – –

–

D: Involving self-help groups (10 items) –

Self-help groups can use presentation facilities, rooms and office facilities of the hospital

– – – – –

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–

Patients are made aware of possible symptoms and impairments after their release Patients are given health tips (e.g. diet, exercise) for better coping with their illness Patients are encouraged to take better care of their health in everyday life Patients are informed about further possibilities of assistance (e.g. Internet, counselling)

Patients and/or their relatives will be personally informed about self-help groups on a regular basis Patients and/or their relatives will be informed about self-help groups with written information material on a regular basis The relevant ward and/or the hospital support self-help groups with their public relations The relevant ward and/or the hospital has an assigned permanent representative for selfhelp affairs The spokespersons of co-operating self-help groups are known in the ward and/or hospital There is a regular information exchange between self-help groups and the relevant ward and/or hospital Hospital staff is informed about the collaboration with self-help groups Self-help groups are involved in teammeetings and/or quality management The collaboration with self-help groups is recorded in treatment pathways, corporate vision or similar documents