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The European Alliance of Associations for Rheumatology (EULAR) has updated its recommendations regarding the involvement of so-called Patient Research Partners (PRPs) in scientific projects in rheumatology. Through a document published in Annals of the Rheumatic Diseases, experts aim to provide a guide to enable researchers and PRPs to establish effective and mutually beneficial collaborations. 

Who Are PRPs?

EULAR's definition of a PRP is "a person with a relevant medical condition who acts as an active member of a research group on an equal basis with professional researchers, adding the benefits of their experiential knowledge to every phase of the project." According to the experts at EULAR, direct experience of the disease is needed, and informal caregivers cannot act as PRPs, except in the case of parents of pediatric patients.

It is essential to understand that the PRP is not one of the patients enrolled in the study but a patient included in the research team to offer a patient's perspective. They must have "a high health literacy," said Serena Oliveri, a researcher at the Department of Health Sciences at the University of Milan, Milan, Italy. Oliveri was a leader of the PREFER project, which is part of the Innovative Medicines Initiative. The latter initiative is a partnership between the European Community and European pharmaceutical industries aimed at improving the development of new therapies. 

Within the PREFER project, several studies were conducted (including two on rheumatoid arthritis) to evaluate how to integrate patient preferences in the development, approval, and postapproval phases of new therapies. These studies helped clarify the impact of patient participation in research, as well as potential obstacles.

Multiple Benefits 

What inspires a patient to become a PRP? According to EULAR experts, it is the possibility of acquiring more information about their disease, gaining self-confidence, performing a useful task, and getting a more precise idea of scientific research.

However, the inclusion of PRPs benefits the quality of research, "including improvements in the relevance of the questions posed to patients during the experimentation," said Oliveri. Interacting with PRPs promotes the use of appropriate language and avoids terms that are "excessively medicalized and depersonalized, potentially leading to participants' disengagement from the study."

Discussion with the patient is a source of new ideas and motivation for the researcher because he or she becomes able to appreciate the real-life implications of the research. "PRPs provide researchers with basic information about how the symptoms of the disease impact patients' daily activities and quality of life," said Oliveri. PRPs "then play key roles in disseminating the results of clinical studies to the general population, thus increasing the general population's trust in scientific progress." Although the potential impact of the PRP is more self-evident in clinical studies, according to the EULAR task force, patients should be involved in all types of research, including basic and translational research.

Support and Respect

Using PRPs is not always easy. Drawing on the knowledge gained from the PREFER project, Oliveri said that "the most frequent obstacle concerns the inadequacy of resources to support the involvement and dedication of PRPs (eg, the lack of a dedicated budget for reimbursing patient partners or the absence of a formal on-boarding and training activity specific to the clinical study). Another problem is the uncertainty about how to make the role of the PRP operational, including the lack of a formal description of the involved patient partner." The EULAR document emphasized that facilitating the involvement of PRPs is the responsibility of all team members.

Another obstacle, according to Oliveri, is that sometimes PRPs perceive "a sort of difference in preparation on the topic between them and the other members of the research team, which leads to feeling partially inadequate to provide their support to the research itself." In this regard, EULAR experts recommend including more than two PRPs in the study so that the patient feels encouraged to express their opinion even when it contrasts with that of a researcher. The parties should discuss differences with mutual respect, which, as one of the general principles of EULAR states, is an essential element "for building a partnership and an equal collaboration" that benefits both.

This story was translated from Univadis Italy, which is part of the Medscape Professional Network, using several editorial tools, including AI, as part of the process. Human editors reviewed this content before publication.