The European Alliance of Associations for Rheumatology (EULAR) has revised its guidelines on involving Patient Research Partners (PRPs) in rheumatology research projects. A document, recently featured in the Annals of the Rheumatic Diseases, aims to assist both researchers and PRPs in forming productive, symbiotic partnerships.

Who Are PRPs?

EULAR defines a PRP as "an individual with a relevant medical condition who actively collaborates as a member of a research group, working alongside professional researchers and contributing their experience with the condition throughout every stage of the project." EULAR's experts emphasize the importance of lived experience, ruling out informal caregivers, except for parents of pediatric patients.

It’s important to note that a PRP is not a participant in the study itself but a patient who contributes as part of the research team. PRPs are there to bring a patient’s perspective into the research process. "They need to have a high level of health literacy," explained Serena Oliveri, a researcher in the Department of Health Sciences at the University of Milan, Italy. Oliveri led the PREFER initiative, part of the Innovative Medicines Initiative, a joint effort between the European Union and the pharmaceutical industry to advance new therapies.

Within the PREFER project, studies were conducted – including two focused on rheumatoid arthritis – to assess how patient preferences could be integrated during treatment development, approval, and post-approval stages. These efforts helped to highlight both the benefits and challenges of involving patient voices in research.

Multiple Benefits

Why would a patient choose to become a PRP? According to EULAR experts, patients may be motivated by greater access to disease-related knowledge, a boost in self-confidence, and the rewarding experience of contributing to scientific research.

The value of PRPs, however, extends beyond their individual benefits. As Oliveri noted, their involvement enhances the quality of research by “improving the relevance of the questions posed to patients during studies.” Engaging PRPs helps prevent the use of overly technical or impersonal language, which could distance patients from research participation.

Involving PRPs also enriches the researcher’s perspective, providing insights into the real-world effects of diseases. "PRPs offer researchers a better understanding of how the illness affects daily life and overall quality of life,” said Oliveri. Additionally, PRPs can play a crucial role in communicating research findings to the broader public, increasing societal trust in scientific endeavors. While their contributions seem particularly vital in clinical research, EULAR's task force believes patients should contribute to all areas of research, including basic and translational studies.

Support and Respect

Incorporating PRPs in research does come with its challenges. Reflecting on the PREFER project’s findings, Oliveri noted that "one common issue is the limited availability of resources to support PRPs, such as the absence of a specific financial provision for compensating patient partners or the lack of formal onboarding and specific training tailored to the clinical study." A further issue arises from the often ambiguous nature of the PRP’s role, with no clear-cut job description provided. According to EULAR’s guidance, the responsibility for easing these hurdles lies with the entire research team.

Another challenge is that PRPs often feel less prepared than their researcher colleagues, which can lead to feelings of inadequacy. To counteract this, EULAR recommends including at least two or more PRPs in a project to promote comfortable, open dialogue, even if their opinions differ from those of researchers. Open, respectful discussions are essential, as EULAR highlights that mutual respect is fundamental for fostering an equitable collaboration that benefits all parties involved.

This article was originally published by Univadis Italy, part of the Medscape Professional Network. The story underwent editorial review, including the use of AI tools for translation and refinement. Human editors ensured its quality before publication.

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