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SP0138 The challenges of patient involvement in scientific research. how to achieve true representation of the patients' voice?
  1. M De Wit,
  2. on behalf of the EULAR Working group for Collaborative Research
  1. Dept. Medical Humanities, EMGO+ research institute, VU University Medical Centre, Amsterdam, Netherlands


There is a strong call in the western world for collaborative research. Rheumatology is one of the disciplines that has explored best practices and paved the way to implement lessons learned. Although good methodologies for evaluating the impact of patient participation stay behind, we have been able to develop expert-based recommendations for collaboration. They are helpful for both researchers and patient representatives, but they do not address all concerns that occur in daily practice. In this lecture current challenges of integrating the perspectives of patients in clinical research will be discussed: 1. Defining the role and complementary value of patient research partners; How can patients in the role of collaborative partner contribute to research in addition to the data that patients provide as respondent or study participant? 2. Facilitating and guiding researchers in collaborative research; We have experience in preparing and educating patient representatives for their role in research, but how should researchers be trained and supported? 3. Preserving the patients' voice throughout the research process; Qualitative research may elicit patients' experiences with health care or health interventions, but what is needed to guarantee that these findings are not lost in the rigorous process of producing scientific knowledge? 4. Demonstrating impact of collaborative research to funders and the public; Despite many case studies reporting a great variety of patient participation methods, there are no clinical trials nor consensus on a validated methodology for assessing the outcomes of patient involvement in research.

For each challenge we will try to propose a way forward. These challenges will also be discussed at the newly established EULAR working group for collaborative research.

Disclosure of Interest None declared

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