Why do people get involved and stay involved in research?

Result sharing from the UK PRP Survey

What drives someone to become and continue as a patient research partner (PRP)?

The UK PRP survey data results revealed a mix of motivations—some deeply personal, others more outward-facing, but pretty much all of them were rooted in a shared desire to make a difference. For many, this personal journey with a lifelong chronic disease, ignites a passion to advocate for change or get involved in ways that could help make a difference for others. A compassionate perspective is often coupled with a desire to educate and empower other patients, and the people around them whether that be family, friends, employers or co-workers, through fostering wider understanding, greater empathy, community and a shared purpose among those involved in research initiatives.

In the survey, people were able to select more than one reason why they get involved. A majority indicated they are choosing to do so for two strong altruistic reasons:  the most common being  ‘to help advance medical research’ and the other ‘to help improve outcomes for others’ (through an active role in the treatment and drug development research process). Many PRPs also see their involvement as a way of giving back to the health care providers who have helped them, expressing a profound wish to show their gratitude and value of the support and treatments they have received.  In addition, the opportunity to influence research priorities and contribute to study designs that consider patient perspectives is a significant motivating factor for many PRPs. They recognise that their insights can lead to more relevant and effective research outcomes, helping to bridging the gap between the clinical research and the people it's aimed at helping.

Closely linked to the desire 'to help others’, was some PRPs wanting to engage and learn so that they can help others to understand disease through their advocacy, to 'be a voice for others' and help empower them through greater self-awareness. Moreover, PRPs recognise the importance of educating healthcare professionals about the reality and nuances of lived experiences. They believe that by sharing their personal narratives and insights, they are contributing significantly to a more holistic understanding of health conditions, an approach that highlights the importance of recognising the ‘whole person’ rather than purely focussing on clinical symptoms or diagnostic criteria.

"to be a voice for those who cannot be heard"

For some PRPs, involvement was initially about ‘better understanding their own condition’—aiming to gain insights into the latest developments and feeling more empowered in their own health journey. Some were drawn to PRP roles by a genuine personal interest and curiosity in the world of research itself, finding the process fascinating and fulfilling. Others felt it to be a good use of their time and a way to keep their own minds stimulated (often in later life when they found they had more time to invest in voluntary work).  There were a few reasons that didn’t fit neatly into a single category but in addition to advocacy, professional curiosity and so on, things like financial gain highlights the many ways people step into the role.

Whatever the motivation, we know that PRPs play a crucial role in shaping more meaningful and relevant studies and their lived experience can enrich research.  The role of a 'patient expert' or patient research partner allows individuals to engage with researchers, clinicians, and other stakeholders in a collaborative environment, which can be both fulfilling and empowering.

I feel it's crucial that we keep sharing opportunities and get more people involved. We need all kinds of PRPs from the newly diagnosed to someone who has decades of lived experience, the young, the old, middle aged, working, retired, all genders and ethnicities, experienced and in-experienced to create a wholesome resource pool that enables research to find solutions that work for us all.  

If you've been involved, what first sparked your interest? And if you haven’t yet, what would encourage you to take part?