Public and patient involvement in social and health care has proceeded in many civil societies. Depending on the legislations on national and community levels, citizens and patients have a greater say in shaping social and health care. In Germany, the patient involvement by self-help organizations at the macro level (national level and level of federal states) has significantly developed over the last ten years. At the meso level, however, the patient involvement is neither such far nor such systematically developed.
The concept of self-help friendliness (SHF) in health care is a patient centred model that allows the development and implementation of patient participation in different health care institutions: hospitals, ambulatory medical care, public health institutions, rehabilitation facilities etc.
In a series of projects on SHF we have (1) analysed the needs and wishes of self-help groups for cooperation with health care professionals as well as their experience, (2) gathered facilitators and barriers concerning the cooperation between self-help groups and hospitals, (3) developed a framework concept for SHF in hospitals including eight quality criteria for measuring SHF, and (4) implemented the framework of SHF in about 40 health care institutions (www.selbsthilfefreundlichkeit.de).
Further projects followed: development of an instrument for measuring SHF in hospitals, integration of SHF-criteria in quality management systems in inpatient care as well as in out-patient care, and transferring SHF to a) medical ambulatory care, b) public health departments, and c) rehabilitation facilities.
Considering advantages and shortcomings of the approach, we can summarize that implementing SHF is feasible, transferable and a helpful measure for promoting patient centeredness in health care.
Amongst the various civil society organizations and associations there is a large field of self-help groups (SHGs) and self-help organizations (SHOs). The notion of self-help is used parallel to other notions such as patient and health consumer groups. A certain amount of such groups exists in nearly all countries, but their visibility varies widely (Hatch and Kickbusch, 1983, Baggott and Forster, 2008 and Keizer and Bless, 2010). In Germany these organizations and groups have become increasingly involved at various political levels (local to national) in the governance of health care, mostly advocacy and evaluation, sometimes planning and delivery (Schulz-Nieswandt, 2011 and Trojan and Nickel, 2011a). Closely linked to these functions is their importance for quality improvement of the health care services as all of the mentioned features of involvement can be regarded as implicitly or explicitly aiming at improvements of the services according to the needs and interests of patients.
Already over three decades ago Levin and Idler (1981) described these third sector organizations (“mediating structures”) as a “hidden health care system”, arguing that their importance for the provision of services would not really be appreciated by health policy makers. Accordingly, one could address the impact of self-help associations in Germany as a “hidden health care improvement system”. This thesis is underpinned by a study with 345 SHGs in Hamburg, Northern-Germany, in 2003 (52% of all addressed SHGs in Hamburg; Trojan and Estorff-Klee, 2004, p. 66): 18% of the SHGs already participated in at least one quality improvement measure of health care professionals like quality circles, education and training, user assessment etc., and further 40% were willing to do so.
Cooperation between health care staff and patient organizations is a crucial link between the professional and the “hidden health care system” and can be regarded as a concrete method to put a modern concept of patient centeredness, as defined by the Institute of Medicine (National Research Council, 2001), into practice. One of the identified four system components of health care quality is particularly relevant for our context: “Patient centeredness refers to health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients' wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care.” ( National Research Council, 2001, p. 7).
Despite the considerable amount of literature, very little has directly explored the role of SHGs and SHOs in health care improvement. There are grounded complaints about a general lack of self-help oriented research (Schulz-Nieswandt, 2011), specifically a need for more context-sensitive research (Kuhlmann and Annandale, 2012). The international literature is pre-dominantly focussing on other roles and functions of patient organizations (cp. Landzelius and Dumit, 2006), in particular as a challenge for the medical system (Kelleher, 2006), as a social movement (Allsop et al., 2004), as an approach to democratize the health care system (Box, 2009 and Lofgren et al., 2011), or as first attempts to establish cooperative alliances between the “lay care system” and the formal health care system (Borkman, 1990 and Kurtz, 1990). The agreement about the importance of such alliances has grown considerably (Goldman and Lefley, 1996, Mackay, 2004, Akrich et al., 2008 and Baggott and Forster, 2008). However, the debate on potentials, shortcomings and roles of SHGs and their collaboration with health care professionals within the present health care provision is still going on (Forster and Gabe, 2008 and Cowden and Singh, 2007).
In Germany, the term “self-help friendliness” (SHF) has become a popular expression for more openness of health care institutions to cooperation with SHGs of chronically ill patients (Trojan et al., 2011 and Fischer et al., 2004). In our contribution we will present and discuss the development of SHF as an approach for cooperation based on a “partnership model” (Rabeharisoa, 2003). Rabeharisoa's model was basically used for participation of patient organizations in scientific research. We believe it to be equally relevant for our approach as its main characteristics are: “(i) the patient organisation is master of its research policy; and (ii) patients are specialists' partners in their own right” (Rabeharisoa, 2003, p. 2131). These requirements for a ‘true’ partnership apply in a similar way to SHF. Looking for the impact of civil society organizations on the provision of health care services we will explore, what we may expect from this approach and which shortcomings it has for the future.
