gms | German Medical Science

Who is “the patient”, when it comes to filling some empty seats in a guideline development group? First of all, this question should be reworded in “who are the best available persons to represent patient interests” in a particular case, and how do we identify them. Guideline developers in Germany did not have to start from the scratch to find a systematic answer, they could build on a meanwhile well established culture of patient participation in Germany’s health system, introduced by law (Social Law Book V, § 140 f to be precise) in 2004. The Federal Parliament had decided that patient representatives must participate in Germany’s paramount decision making body, the so called “Gemeinsamer Bundesausschuss” (Federal Joint Committee). This system will be explained in the lecture.

A similar, less formal structure had already existed since 2001, when the General Medical Council and the National Association of Statutory Health Insurance Fund Accredited Physicians had formed a “patient forum” with tree umbrella organizations representing the well established and partly well organized self-help field in Germany. This “forum”, i.e., the self-help representatives there, are usually addressed by guideline developers and the self-helpers in the forum make sure that adequate groupings are involved.

To sum it up: independent self-help organizations of patients plus self-help supporters own the process of choosing those well informed persons they want to send as “experts by experience”.

The author, patient representative in the Joint Committee mentioned above, participated in a couple of guideline processes, and some personal experiences will be shared. Surprisingly, it turned out that:

• in this highly structured process a neutral expert was able to orchestrate a (mostly) peaceful and constructive process of some thirty representatives of their respective associations (“psych” is a most diverse field in medicine, particularly in Germany!),
• the knowledge and effort of so many experts, all working hard “free of charge”, was really impressive,
• evidence was complemented by consensus (every question must find an answer),
• “one person, one vote” was practiced including patient representatives (with growing respect for them over time),
• patient’s voice was heard, accepted, and incorporated in the guideline text in a fair way,
• the self-help movement and the ebm movement might be natural partners.