Table 1 Overview of our sample
Organization | N = | Interviewee affected | Year established | Organizational structure & membership composition | Membership size | Self-claimed Goals |
|---|---|---|---|---|---|---|
German Society for Muscle Disease | 2 | No/No | 1965 | Board of directors (3-9 members); scientific advisory board (5 members); volunteers; family members and patients | ca. 8000 | To offer consultancy; to support research and public relations to make the disease known to the public; engaged in health policy for representation of interests |
Association for People with Locked- In-Syndrome Self- help and Friends | 2 | No/No | 2000 | Board of directors (3 members); advisory board; family members and patients | Ca. 150 | To ameliorate and facilitate therapy for patients; conducting educational work for patients and their family members, therapists and doctors; to create publications and establishing a documentation center; organize international meeting with experts and affected persons |
German Alzheimer Society - Dementia Self-Help | 3 | No/No/Y es | 1989 | Board of directors; advisory board with people with dementia is convened; family members and patients | Ca. 15.000 | To increase understanding and support of the public towards people with dementia via public relations work; to improve possibilities to learn how to live with dementia, and self-management of relatives; organizing seminars with local and regional groups; to offer consultancy; to support scientific research and develop/text forms of care-taking; involved in health care policies social-political decisions and engaged in social legislation matters |
Self-Help Group for Women after Cancer | 3 | Yes/Yes/Yes | 1976 | Board of directors (4-7 members); patients | Ca. 12.000 | To offer self-help groups and consultancy; organizing events and expert conferences; engaged in health care and social-political lobby work as interest representatives (e.g. in patients forum of German Medical Association); cooperation with other organizations and clinics |
GBA | 3 | No/No/Y es | 2004 | Public legal entity four leading umbrella organizations of the self- governing German healthcare system. | To specify the concrete services to which patients and persons are insured; to issue directives for the benefit catalogue of the statutory health insurance funds (e.g. Disease management programs for the chronically ill); to conduct hearing procedures and consults external experts; to request expert opinions from independent scientific institutions; responsible for quality assurance of medical care in clinics and doctor’s practices. |