gms | German Medical Science

G-I-N Conference 2012

Guidelines International Network

22.08 - 25.08.2012, Berlin

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Methods of patients' involvement in clinical practice guidelines on controversial conditions

Meeting Abstract

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  • W. Häuser - Klinikum Saarbrücken, Internal Medicine 1, Saarbrücken, Germany
  • M. Settan - German Fibromyalgia Association, Seckach, Germany
  • S. Eis - German League for People with Arthritis and Rheumatism, Bonn, Germany

Guidelines International Network. G-I-N Conference 2012. Berlin, 22.-25.08.2012. Düsseldorf: German Medical Science GMS Publishing House; 2012. DocP090

doi: 10.3205/12gin202, urn:nbn:de:0183-12gin2026

Published: July 10, 2012

© 2012 Häuser et al.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by-nc-nd/3.0/deed.en). You are free: to Share – to copy, distribute and transmit the work, provided the original author and source are credited.

Outline

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Background: There are no reports available how to involve patients into CPGs on controversial conditions such as fibromyalgia syndrome (FMS).

Objectives: To point out the methods of involvement of patients into the German interdisciplinary guideline on FMS.

Methods: Synopsis of the methods of patient involvement. Patients were prepared for participation by a patient version of guideline methods.

Results: The two largest German FMS consumer organisations actively participated in the development and dissemination of the CPG. The two consumer organisations and the ten scientific organisations involved had one vote each in the steering group and in the consensus conferences. FMS-patients were included into each of the 8 working groups. Patients participated in the structured consensus conferences, wording of the recommendations and writing of the draft of the CPG. Patients defined their own key questions and research desiderates and gave a reasonable extra vote in the consensus conference. A patient version of the CPG was developed by the two consumer organisations. The patient version of the guideline was available on the websites and in the member's journals of the consumer organisations. The patient version of the guideline was mentioned in newspaper articles and TV programs on FMS initiated both by the consumer and scientific organisations.

Discussion: The multiple consensus processes helped to overcome rivalries between scientific societies and between consumer organisations on the 'ownership' of FMS.

Implications for guideline developers/users: Patients and consumer organization should be included into all steps of development and dissemination of CPGs on controversial conditions.