The 20×20 International Panel for Consumers in Arthritis Research: an initiative of the Cochrane Musculoskeletal Group

Article type
Authors
Rader T1, Lyddiatt A2, Cattivera C3, Gunderson J4, Idzerda L1, Nasser M5, Maxwell L2, Tanjong-Ghogomu E6
1Institute of Population Health, University of Ottawa, Ottawa, Ontario, Canada
2Cochrane Musculoskeletal Group, University of Ottawa, Ottawa, Ontario, Canada
3Director, Pacientesonline, Avellaneda, Buenos Aires, Argentina
4Consumer Advisory Council, Canadian Arthritis Network, Glaslyn, Saskatchewan, Canada
5Institute for Quality and Efficiency in Health care (IQWIG), Cologne, Germany
6Centre for Global
Abstract
Background: The Cochrane Musculoskeletal Group (CMSG) has an active group of consumers who comment on Cochrane reviews and protocols in an effort to make the work of the Cochrane Collaboration more relevant and meaningful for all people with musculoskeletal conditions. To build on this success, and to expand the role of consumers in research, we wish to make our consumer group more representative of the international membership of the CMSG. We are in the process of assembling an international panel of people with arthritis who would be consulted regularly about research priorities, goals, choice of outcomes, patient values, and knowledge translation. Objectives: (1) To assemble 20 consumer leaders from 20 countries who will recruit 20 consumers in their country that can provide input into arthritis research activities such as systematic reviews and priority-setting. (2) to assess other models and methods for assembling international Consumer groups and audit our current activities. Methods: Following a scoping review of the literature (Spring 2010) on methods for engaging patients in research, and performing an audit of our current recruitment and retention strategies for patient volunteers, we will explore the extent to which our current methods are based on evidence. Further, we will perform an environmental scan of other international consumer organizations and explore gaps in our knowledge about effective recruitment and retention strategies. Results: The results of the scoping review and the mapping exercise to determine the extent to which CMSG activities are based on evidence will be presented. Conclusions: This review of the evidence behind consumer engagement initiatives and an audit of our current practice will allow us to assess the feasibility of adapting other international models for our purpose provides clear direction in planning new initiatives.