Background Over the last few years, active participation in patients of health care has intensified internationally. In France, this has benefited from legal provisions to expand the public debate by including patients, to improve the participation of health actors and promote individual and collective rights of users of the health system. These provisions are called Health Democracy (HD).
The collaboration between patient associations and health care professionals' organizations is an example of HD, and has been implemented in France recently.
Objectives To show a practical application of HD in rheumatology through collaborations between patient associations and the Rheumatology Society when dealing with recommendations for the management of chronic inflammatory rheumatism diseases (CIRD).
Methods The French Society of Rheumatology (SFR) has developed in 2014 CIRD management recommendations for health professionals. Recommendations for rheumatoid arthritis (RA)1 and spondyloarthritis (SA)2 were thus developed by two separate groups.
In the work described here, at the instigation of patient associations, working groups were established to develop patient versions of these management recommendations. Each working group comprised part of the initial working group completed by patients identified by the partner patient organization to achieve a numerical balance (patients/health professionals). A standardised methodology was applied to reword the recommendations in a language accessible to all. The work was carried out during a physical meeting then continued by exchanges of emails, under the coordination of a binomial associative representative /rheumatologist. The last step was a survey among a wider group of patients to ensure wider knowledge and acceptability.
Results In the joint working groups, speaking out was balanced between the various stakeholders. An adaptation to lay language was collectively achieved without distorting the medical meaning of the inital recommendations. The SA group shortened the final recommendations whereas the RA group maintained the initial number of recommendations. Surveys for satisfaction were high. These surveys were also useful for dissemination and implementation of recommendations.
Conclusions This is the first time that recommendations for the CIRD management published by the SFR are adapted into lay versions by patients, for patients.
The active participation of patients and their equitable representation is an example of Health Democracy. Far from being passive or taken, the patient becomes actor and contributor in improving the management of his peers. The dissemination of these recommendations by including patient organizations, will allow empowerment of patients who have to work with their doctor in the dynamic of shared decision.
Gaujoux-Viala C, Gossec L et al. Recommendations of the French Society for Rheumatology for managing rheumatoid arthritis. Joint Bone Spine. 2014;81(4):287-97.
Wendling D et al. Recommendations of the French Society for Rheumatology on the everyday management of patients with spondyloarthritis. Joint Bone Spine. 2014 Jan;81(1):6-14.
Disclosure of Interest None declared