Challenges to Research Involvement: What’s holding people Back?

Result sharing from the UK PRP Survey (7)

How can we reduce the barriers that would enable more people to get involved in research?

Our e-survey asked patient research partners (PRPs) about the challenges they face in contributing to research. In previous blog posts we've talked about possible lifestyle and financial barriers to involvement. This blog post shares e-survey responses that highlight a range of other barriers, which again suggests there’s still work to be done in making involvement accessible and effective for all.

Understanding research terminology was the biggest challenge reported, suggesting that research language is still a significant barrier for those without prior experience. It can feel isolating to be in setting where the vocabulary being used is alien and beyond our every day language. It's less clear if PRPs always understand their role and participation expectations within a project team or where that information comes from. How can we better bridge the gaps? Upfront and accessible training, plain language glossaries are becoming more common but it seems there are no simple frameworks for 'onboarding' PRPs (click the link to see our free guide for research teams). In addition, matching seasoned PRPs to new or less experienced PRPs to increase mentoring support, could help the latter to feel more confident to contribute to discussions without feeling out of their depth.

Time management and physical/health limitations also featured prominently in the results, reflecting the reality that many PRPs are juggling other responsibilities such as jobs or caring duties as well as managing their own health challenges. Some PRPs felt there is not enough recognition that the diseases they are there to speak about are also an ongoing daily problem for them, which occasionally makes them less able to be as consistent as other team members. Being mindful of a need for flexible participation options, such as a wider time window for email responses, document input and things like making recorded sessions available for those who could not attend a meeting, could open doors for those unable to attend in person or during standard hours.

Despite the prevalence of patient organisations that help connect people to opportunities, nearly one in five PRPs in the e-survey told us they still felt they lacked access to involvement opportunities. This suggests that more could be done to promote involvement more widely—perhaps through GP surgeries, local community centres, and even digital platforms as mentioned in a previous blog post.

While a lack of  support from researchers and teams was less commonly reported as a barrier, the fact that some PRPs felt not treated as equal members of the research team indicates a cultural gap. Although this was sometimes felt throughout the process, it was more specifically sited during the end stages such as dissemination and acknowledgement.  

PRPs can bring a host of professional skills to the table, they are more than just ‘patients’ or the sum of their lived experience. Some PRPs would welcome the opportunity to write or present research at conferences or participate in those kinds of extended research environments. Considering how much patient insights drive research, it also makes sense for related host organisations and academic publications to include them more — not just as contributors but as visible, valued voices in their own right. Including patients as speakers or co-authors in conferences or publications not only amplifies their voices but also demonstrates a commitment to valuing patients and their insights—removing barriers to do so can help set a powerful example to the wider community and showcase the impact of meaningful involvement.

A recent advocacy campaign image used to reflect PRP frustration at lack of reciprocal 'zero cost' options for them to register at conferences.

Effective partnerships depend on valuing lived experience as much as academic expertise—something that needs to be woven into research practices from the outset.

As the PRP role continues to evolve, the question remains:

How can we create a system where everyone who wants to contribute can do so, without facing unnecessary barriers?

And what would it take to move even further from tokenism to truer, total and impactful involvement?