The Impact of Involvement: What PRPs Say They're Gaining (and Where Gaps Remain)

Result sharing from the UK PRP Survey (9)

One of the most powerful things about Patient and Public Involvement (PPI) is the impact it can have—not just on research, but on the people involved. Our e-survey asked Patient Research Partners (PRPs) to reflect on what they’ve gained through their involvement, and the responses were uplifting, revealing and give rise to thoughts.

By far the most reported benefit was increased knowledge of their condition. Many PRPs said they now felt better informed than ever—some even more than they had through their own clinical appointments and interactions. Others shared how this knowledge helped them take more tangible action in their daily lives, from adjusting routines to managing symptoms more knowledgeably and confidently. This kind of direct impact learning, grounded in both science and shared experience, appears to be one of the clearest returns on involvement.

A strong theme of empowerment and confidence also emerged. Over half of PRPs said they felt more able to self-advocate and speak up in their healthcare settings. Many also found that connecting with others—whether fellow PRPs or members of the research team—helped them to better understand their own condition and navigate more of the day-to-day challenges. These connections offered a sense of reassurance, shared insight, and practical peer support—from discussing treatment experiences and flare management strategies, to feeling less isolated in the emotional journey of living with a long-term condition. For some, being part of research gave a sense of purpose or control in the face of illness—a reminder that their lived experience is not only valid, but valuable.

Just under half also reported feeling a deepened connection with the research community. Whether this had come through learning about emerging science or meeting researchers and fellow PRPs, these connections seemed to offer a sense of belonging. It’s become better recognised that people with long term chronic conditions can feel isolated and disconnected to their social circles, especially if some of those connections were associated with activities they can no longer take part in. Crucially, regular team working and contact with researchers and clinicians also helped to smooth out and even break down some of the barriers patients felt they often face in clinic. For example, understanding a clinician's research priorities gave PRPs a clearer picture of the clinical decision-making process, while researchers gained insight into how communication or time constraints can affect patients during consultations. These mutual insights can create space for greater empathy, trust, and respect—ultimately helping both sides approach future appointments or projects with a more informed, collaborative mindset. It’s clear that when research is done with—not just on—patients, it can forge meaningful relationships and shared purpose.

Not all of the findings were positive and have highlighted potential areas for improvement. A small number of respondents (8%) said they gained little or no new understanding through taking part in research - perhaps because they were already well informed and could have been challenged more? Others felt that the research process could still feel exclusionary or overly academic—an echo of challenges reported elsewhere in the survey, such as difficult terminology or not feeling treated as equal team members.

Conversations with PRPs since the e-survey results, have also give some thoughtful reflections on the potential psychological impact of being continually involved in discussions centred around illness - for a few PRPs, the constant focus on their own condition could feel emotionally draining, potentially reinforcing anxiety, pain awareness, or a greater sense of limitations. Similarly, in advocacy work, staying immersed in the world of disease and healthcare can sometimes make it harder to mentally step back and focus on other areas of one's life. Is a full-time 'patient identity' a healthy one? This doesn’t negate the value of advocacy or involvement, indeed, it helps many to rationalise and challenge their disease, but it’s an important reminder that emotional wellbeing should also be considered and supported as part of the PRP experience. One way to help manage this could be through peer support strategies, such as informal check-ins, buddy systems, or reflection spaces where PRPs can share experiences in a safe, non-judgemental environment. These approaches can help reduce emotional strain, isolation and create a sense of solidarity. Knowing that others feel the same can be both grounding and empowering—and peer spaces may also offer tools for balancing involvement with personal boundaries and self-care.

So what can we take from all of this? On one hand, the data paints an encouraging picture of personal growth and shared learning. It shows us that involvement can empower individuals, deepen their understanding of their condition, and foster stronger connections within the research ecosystem. But it also highlights important areas where more could be done to enhance the experience of PRPs —especially to support those who may currently feel excluded, overwhelmed, or under-prepared.

There is need to keep evolving these roles, interactions and to consider how to build more equitable and inclusive pathways into involvement. It could include better onboarding, accessible training, and flexible formats that accommodate different health needs and life circumstances. We must all explore how we measure and value the impact of involvement—not just through outputs driven by academic research scales, but also by doing it ourselves as PRPs in terms of monitoring, measuring and championing our personal development, wellbeing, and confidence needs. Importantly, we should remain mindful of emotional and psychological costs, ensuring support structures are in place to sustain all PRPs, at all levels of experience, over time.

The path forward requires a collective commitment to evolving how people are involved in research. Not everyone will want the same level of engagement, and that’s okay—but everyone should feel that they are welcome, supported, and respected if and when they choose to contribute.

The impact of involvement isn’t just about the research outcomes. It’s also about what PRPs take away from the experience: knowledge, confidence, and connection. And when those are missing, we need to ask: what can we do differently together?