Clinical research has always depended on the willingness of patients to volunteer as participants in studies. Lately, patient representatives (PRs) have also been involved as working partners in research projects. Such involvement has proven to be an effective method to ensure relevant and patient centered research. In close collaboration with researchers, PRs can contribute throughout the whole research process, from identification and prioritizing of research topics, to dissemination of results and decisions about which research is funded. The European League Against Rheumatism (EULAR) therefore recommends collaboration with patient representatives (PRs) in scientific projects to ensure that these are in line with patients’ needs and priorities (de Wit et al. 2011).
To ensure active involvement, researchers should follow published recommendations, principles and indicators of successful PR involvement (Abma et al. 2009, Boote et al. 2006, Hewlett et al. 2006, Oliver et al. 2004, Royle et al. 2001).
Some central principles are time and climate for role negotiation, an appropriate budget for covering the costs of PR involvement, a mutual respect of the differing skills, knowledge and experience of PRs and researchers, appropriate training of PRs as well as of researchers, that PRs are involved throughout the whole research process, that their involvement is acknowledged in the research report(s), and that the findings are made available to consumers in formats and languages they can easily understand.
Some challenges in this process may be that PRs feel uncertain concerning their ability to contribute and/or doubt if they will really have any significant influence in the research process. Further, they may have a tendency to look up to experts, and question their own experiential knowledge. PRs have emphasized how important it is to create a safe and respectful environment, especially in the beginning, and that researchers take time to share a cup of coffee, listen to the concerns of the PRs, providing reassurance, adjusting time schedules and help them with difficult tasks. Care should also be taken not to overburden the PRs by for instance expecting them to read large number of documents or participate in long meetings with little time for breaks. One should also be alert to improper reasons and forms for collaboration, such as involving PRs for external and “aesthetic” reasons, or to enhance the compliance of patients in a trial.
However, researchers as well as PRs report that collaboration generates substantial benefits to the research process. Most important is the notion that research that reflects the needs and experiences of patients is more likely to produce knowledge that can be used to improve clinical practice. Other examples of benefits are revealing of prejudices, translating complex and abstract language, gaining entrée and access to networks and organizations, establishing trust among study participants, minimizing the risk of misinterpretations, and developing new perspectives and friendships thorough dialogues and mutual processes within the research teams.
Disclosure of Interest None Declared