A longstanding priority of the TMJA and its initiative, the Chronic Pain Research Alliance (CPRA), has been to change the culture of scientific research to one that is more patient-centric and includes “patients as partners” on research study teams. It is vital that patients – who have substantial expertise and valuable perspectives from living with their medical condition(s) – be included in the planning and execution of research studies, as well as activities to disseminate study findings. Studies show that doing so benefits both science and the public by developing research questions that are more meaningful and relevant to patients, improving the feasibility of study methods, increasing study participant recruitment and retention rates, and communicating study findings more broadly to diverse audiences.
Although patients are routinely included as study team members in other fields, such as cancer and HIV research, this rarely occurs in research on chronic pain conditions, including TMD and its overlapping conditions. To begin to change this, CPRA’s director, Ms. Christin Veasley, co-chaired an international meeting with Yale professor, Dr. Robert Kerns, to develop the very first guidance for the clinical pain research community on how to meaningfully “partner with patients” on clinical pain research studies. The meeting was supported by, and organized under, the public-private partnership ACTTION/IMMPACT (www.acttion.org). To include perspectives from all key decision-makers, the meeting brought together patients and representatives from academic institutions (clinicians and clinical scientists), advocacy organizations, government regulatory agencies, research funding organizations, academic journals, and the biopharmaceutical industry.
The journal PAIN recently published a summary of the meeting and its recommendations in the article, Patient Engagement in Designing, Conducting, and Disseminating Clinical Pain Research: IMMPACT Recommended Considerations, which is open access and can be viewed at this link.
We encourage you to read the article and broadly disseminate it to your networks. Research truly is better when we do it together!