PATIENT PARTICIPATION MEANS COLLABORATING FOR BETTER RESEARCH
What if the patient is not just the recipient of care, but also plays an active role in the research that shapes the future of our healthcare? That is exactly what we need in scientific research. Patients are not just numbers, but people for whom the research is conducted. Moreover, they increasingly have a voice in how research is designed—not only as participants but as full-fledged partners in dialogue. There is even a term for this: patient participation. Patients with osteoarthritis play a major role in the various studies within TopTreat. We believe it is important that they collaborate with the researchers. That cooperation is therefore central to this work package.
FROM PARTICIPANT TO EQUAL PARTNER IN RESEARCH
We speak of patient participation when patients work together with researchers to improve their research. Their perspective and experiential knowledge can teach us a great deal. This does not just mean taking part in scientific research but truly being involved in all phases that research can go through. Patients can contribute to scientific research in many ways. This can include asking critical questions or providing (un)solicited advice, but patients and researchers can also collaborate as equals. Sometimes patients may even have full control over the research. Because of these various roles, there is a suitable way for everyone to get involved in scientific research.
COLLABORATION IN FOCUS: LEARNING AND IMPROVING DURING THE RESEARCH
Many projects start with some form of patient participation and only evaluate the collaboration process at the end. This evaluation rarely happens during the research, while the needs may change over time. Therefore, this collaboration needs to be better monitored, but we do not yet know the best way to do this. Because patients are involved in all TopTreat studies, we want to investigate how this collaboration evolves over time. What works well? And what challenges do researchers and patients face? By mapping this out and combining it with existing knowledge, we can create a practical guide to better monitor patient participation. Additionally, this group may have their own research questions. Together, we will formulate a new research question and, where possible, answer it together. After all, we can learn a great deal from each other. The result? Research that aligns with the needs, problems, and wishes of patients and thus makes a real impact.
