Personal impact | Societal impact | ||
---|---|---|---|
Researchers | PRPs | Research process | Patient target audience and general public |
Holistic view Attaining a more holistic view of people with a rheumatic condition: Patients get a face Changing perceptions as the result of learning disease impact on daily life Learning to explain research in lay language Better lay summaries in grant applications Better presentations for lay audiences Prompted to consider clinical relevance of research Getting detached from own research (helicopter view) and encouraged to look at research from a patient perspective Better understanding of the societal impact of research | Better understanding of basic research Research comes to life To see the bigger picture More realistic expectations: Understanding why research sometimes fails and why progress takes often a long time Better understanding own disease Understanding the importance of pathophysiological processes for explaining disease activity and for potential treatment options Personal satisfaction Sharing personal experience with fellow PRPs and researchers Receiving recognition | Legitimacy Broader stakeholder representation Patients’ voices are heard PRPs become sparring partner Research agenda Reality check: is research studying questions that are important to patients? Identifying new research topics such as: Pathophysiological factors of fatigue (research proposal submitted) Side effects of MTX (no follow-up) Recruitment PRPs reviewing patient information letters and other patient materials [not seen in this study] Reduced gap between research and the public Motivation Enhanced motivation as result of better understanding of the clinical burden of disease | Improving health care Better patient information as the result of PRPs reviewing lay summaries PRPs and researchers giving presentations for scientific and patient audiences Dissemination PRPs giving interviews for media Combined presentations on national symposia as well as internal educational meetings |