Patients with Rheumatoid Arthritis Offer Researchers Their Perspectives
Patients said that it can be difficult to identify opportunities to participate in research, and all groups agreed that a “language gap†exists between researchers and patients.
Researchers from three prominent universities met at a conference to discuss the complementary nature of patient perspective and researcher skill in the area of rheumatoid arthritis research, and concluded that increasing patient and public involvement (PPI) offers numerous benefits to all stakeholders. A short report, authored by Judith Pollock, of the Institute of Infection, Immunity and Inflammation at the University of Glasgow in the UK, and colleagues, describes the conference.
Researchers from Newcastle University, the University of Birmingham, and the University of Glasgow first established a partnership called the Arthritis Research UK Rheumatoid Arthritis Pathogenesis Center of Excellence (RACE) in 2013. One of the first points that those involved with RACE agreed upon was, say the authors, “that patient engagement and involvement was crucial to facilitate the translation of research undertaken by the center into public benefit.”
The researchers attending the conference were seeking answers to three specific questions from the perspectives of patients and care-givers: how should research charities spend their funds; what influence on research can patients with rheumatoid arthritis (RA) have; and what are the best practices for researchers to provide information about their findings to patients, their families, and clinicians?
The authors of this report note that patients were involved in rheumatology research at all three of the universities before the RACE partnership was formed. Because of that longstanding involvement, RACE provides what the authors describe as a unique opportunity for patients from different programs to come together. Two patient partners from Birmingham, five from Glasgow and six from Newcastle attended and provided critical information.
Patient participants described their goals in becoming involved in the research. They expressed interest in gaining a better understanding of the current research and access to the most recent research, in the ability to share information among patient groups, as well as strengthening their knowledge of the disease and how to ease its symptoms. Patients wanted to ensure that research is targeted at their needs.
On the topic of spending, there were some differences between what patients wanted and what researchers and clinicians wanted. Clinicians expect funding to go toward the development of new treatments, while patients want funding from charities to be directed to “understanding the biological processes that cause disease and on predicting response to treatment,” wrote the authors. Patients expressed the opinion that new treatments, particularly for patients with hard-to-treat RA, should be funded by pharmacological companies.
On the topic of how patients with RA can influence the research being conducted, patients said that it can be difficult to identify opportunities to participate in research and all groups agreed that a “language gap” exists between researchers and patients. Some patients said that becoming involved in research can lead to expertise, making those patients less representative of the patient community as a whole.
Finally, the conference attendees considered the question of how researchers can best communicate findings to patients, families, and clinicians. The authors say, “It was suggested by patient representatives that it might be helpful to conceptualize three tiers of target audience: patients already actively engaged with research; patients who are not engaged; and the wider public.” There was wide support among attendees for such an approach.
The full report, titled “Patient and Researcher Perspectives on Facilitating Patient and Public Involvement in Rheumatology Research”, was published in the journal Musculoskeletal Care on December 16, 2016.
Related Coverage:
Rheumatoid Arthritis Patients Prioritize Quick Relief Above All Else
Rheumatoid Arthritis-Specific Education Programs Support Patients
