How Are PRPs Getting Involved? A glimpse into the evolving role of Patient Research Partners

Result sharing from the UK PRP Survey

Whether in-person or remote, PRPs are getting involved in a variety of activities

The findings from the UK Rheumatology PRP e-survey highlight the diverse research project activities that patient research partners are involved in—and in this blog, we reflect on what this could signify for the changing role of PRPs in research.

The most frequently reported activity was participating in workshops, which often serves as an accessible entry point for getting involved in research. Workshops, along with 'Focus Groups', can differ significantly in content, structure, and format, but their main purpose is to gather insights. Patients who volunteer agree to take an active role in discussions rather than just observing. Whether conducted face-to-face or online, these sessions can accommodate patients' availability and location while sparking an interest in further research involvement. Workshops also offer a peer element that participants may enjoy and might not have experienced elsewhere.

Workshop commonality was closely followed by providing feedback on research proposals and even helping to co-create them. This can include activities such as reading through a research study proposal and sharing the patient perspectives on value, format and outcomes to help shape it. Many also reported contributing to lay review of documents such as reading patient information sheets to help ensure they are understandable and the language is simple and not full of jargon.

Numerous PRPs reported they had taken part in interviews which, similar to workshops, are often used for insight or opinion gathering. Often these kinds of research are classed as 'qualiative' research, meaning the discussion 'data' has to be interpreted by the researcher and is not something that can be simply analysed into a number or percentage (which is called 'quantitative' research).

Some PRPs reported having been part of a patient advisory panel which could also have meant the kind of groups driven by a clinic or hospital (i.e. a group of patients who review clinical practice and standards often called Patient Advisory Groups or 'PAG's for short) or having been part of a research study involvement plan where PRPs were grouped to form a panel that reviewed and commented on ongoing study progress. Some had reported being part of a mix team of experts who form a studies steering committee.

A smaller number of PRPs reported they had been involved in clinical trials or done some sort of research survey, and even fewer reported being involved in the areas of analysis and dissemination—stages that are often overlooked for patient input as its assumed they would not have the skills or understanding (this is not always true!) However, the low involvement in analysis and dissemination may reflect a missed opportunity to include patients more meaningfully in interpreting and sharing findings—an area ripe for growth. This includes opportunities for PRPs to help identify the most effective methods of dissemination that will actually reach other patients, such as community channels, peer-led webinars, or lay summaries tailored for different audiences.

Interestingly, some respondents mentioned more specialised or creative activities, such as supporting app design and development or helping to developing guidelines (for organisations such as NICE, BSR or internationally like EULAR). Fewer PRPs reported having been asked to present the patient perspective at conferences, getting involved in co-authoring, publishing or contributing to international working groups.

All these findings suggest that the PRP role is expanding well beyond simple level consultation and into more collaborative, embedded contributions. Expanding the role could also drive more consistent recognition for co-authorship, and better funding and logistical support to enable PRPs—especially those living with disabilities or long-term conditions—to attend and present at conferences.

Furthermore, patients bring valuable lived insight to idea generation for future research projects, often highlighting unmet needs or overlooked areas of daily life that might not yet be captured in the academic literature. Embedding PRPs early in the research cycle can unlock more relevant, meaningful studies that better reflect real-world experiences.

As PRP involvement continues to evolve, research teams might consider how to broaden access to a fuller range of activities, especially those that build skills and confidence over time. Likewise, more visibility around these varied roles could inspire new voices to step forward and feel their contributions matter—across the whole research journey.

What’s the most rewarding part of your involvement—or what would you like to try next?