Article Text

SP0082 Ten golden rules - how to capture the patient perspective in research?
  1. M. De Wit
  1. Department of Medical Humanities, VU University Medical Center, Amsterdam, Netherlands


Background Many researchers use different approaches to include the patient perspective in research. Although there is a strong belief that patient experiences represent a unique and valid source of evidence, little is known about the effectiveness of different approaches. This presentation provides ten practical considerations that answer the question “how to involve patients in research?”.

Method Based on a responsive evaluation of patient involvement in OMERACT conferences and a review of the 8 EULAR recommendations for the inclusion of patient representatives in scientific projects the author has identified ten considerations for including the patient perspective in research.

Results Many factors determine the success of collaboration between patients and researchers. The level of involvement and the intensity and duration are critical. Structural involvement guarantees a mutual learning process that enables patients and researchers to find out how the patient perspective can be utilize best. On the long term this will enhance the variety, scale and quality of patients’ contributions. A main barrier is the fact that benefits of patient involvement are not immediately visible for all stakeholders. From the researchers it requires a sensitivity for the richness of patients’ stories and comments that need to be learned. And it is the responsibility of the researcher to adjust approach, attitude and communication style to the individual patient.

Conclusion Structural involvement of patients as equal partners is not only beneficial to capture the patient perspective in every phase of a research process, but creates partnerships with benefits that goes beyond the scope of an individual project.

Disclosure of Interest None Declared

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