Background Patient involvement in research is increasing and aims to improve relevance, validity and acceptability of research outcomes. EULAR recognizes the important role of patients and supports the collaboration between the different parties. Including the patient perspective in scientific projects is not easy, nor is it obvious for patients how to interact with professionals. Both the patient research partners and the health professionals need support, appropriate stimuli and evaluation.
Objectives General objective: to promote the implementation of the EULAR Recommendations for the inclusion of patient representatives in research as well as the use of the new EULAR Network of patient research partners, a database of specifically trained patients from all over Europe.
Specific objective: to develop practical tools that enhance the incorporation of the patient perspective in scientific projects and stimulate the collaboration between patient research partners and health professionals.
Methods (1) Survey of needs for tools: obtained by a 1,5 day meeting with patient research partners from the EULAR Network (n=14), and interviews with leading EULAR scientific investigators (n=5).
(2) Development of tools: the authors created reference cards.
(3) Assessment of tools: the cards were distributed among a wider group of researchers (n=18), expert patients (n=24) and the EULAR Secretariat (n=3) for review.
(4) Finalisation of tools: based on the feedback from the wider group the reference cards were finalized and explained in a complementary brochure.
Results A set of six reference cards were developed to enhance the collaboration in different stages of research. These six cards contain practical information, tips and suggestions for both the patient and the researcher.
Content: 1. Explanatory note and Recommendations; 2. Preparation; 3. During Project Meetings; 4. Acknowledgement and Evaluation; 5. Review Process; 6. Project Review form: The patient version.
Card 1 explains how to use the cards on side one, and shows the EULAR Recommendations on patient involvement in research on side two. Cards 2-5 always contain information for the patient research partner on one side and for the investigator on the other side. In this way, both parties also know what is expected of the others in this phase of the project. Card 6 deals with project proposal reviewing and drafting.
Together with the reference cards comes a general information brochure, to explain the different steps of patient involvement in more detail. As the cards are easy-to-use tools for quick checks, the brochure provides an overall overview of the concept with tips on how to start with patient involvement in one’s own research, examples of best practices and quotes from different stakeholders and details of networks for more information.
The reference cards as well as the general brochure are available on the EULAR website, but also in printed version. Distribution takes place through various EULAR channels.
Conclusions Patient involvement in research increases the value of research. To optimise the process and outcomes of research, patients as well as investigators can make use of these practical tailor-made tools.
de Wit MPT, Berlo SE, Aanerud GJ, et al. European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects. Annals of the rheumatic diseases 2011; 70: 722-726.
Disclosure of Interest None Declared
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