Who Gets Involved in Research (part 2): Exploring Age and Involvement in Research

Result sharing from the UK PRP Survey

Patient and Public Involvement (PPI) plays a crucial role in shaping meaningful and impactful research. But who actually takes part? In another survey result sharing blog post, I look at the responses to the UK PRP survey, where they suggest age as a key factor in determining who gets involved and discuss what some of the reasons and barriers might be. I also hope this facilitates further discussion and I'll be making some suggestion on what PRPs could consider asking for and what Researchers could consider adding.

The survey revealed the following age breakdown among the PRPs who had responded:

The figures suggest that involvement increases with age, peaking in midlife (46-55 years) before declining after 65. But why might this be the case? Let’s explore how different life stages could be impacting the ability or willingness of people to participate in PPI.

Younger Adults (26-35 years)

Despite younger people living with rheumatic health conditions, potentially for longer than some adults, this age group appears to be underrepresented in PRP roles in this survey. Potential reasons could include:

•  Lack of awareness? Many younger individuals may not be aware of PPI opportunities or understand how they could contribute and why it would help.

• Confidence barriers?  Without professional or advocacy experience, or perhaps confidence, they may feel uncertain about whether their voice will be useful or valued.

• Work and life pressures? Many young people may be focussed on education, building careers, managing relationships, or starting families, in addition to managing life around their healthcare needs, leaving little time for voluntary research involvement.

• Niched research alignment? It may be that younger people are simply involved through more specifically aligned patient organisations (who may not have been within the distribution reach of this survey)

  
  

To encourage younger participation, PRPs and research teams could:

• consider targeted outreach (perhaps to organisations with a younger person focus).

• actively support and promote PPI mentoring opportunities within their team structure (aligning newer PRPs with seasoned PRPs)

• share more awareness and clearer explanations of the impact that lived experiences can bring to help shape research.

 Midlife Adults (36-55 years)

It looks like participation begins to increase in this stage, particularly towards the 46-55yr age range which was the overall highest represented category in the survey results. This could be due to:

• Greater awareness and experience? Individuals may have been living with a condition for many years by these ages, have a stronger self-awareness and understanding of their condition, know what impacts it and how it affects those around them too. Perhaps the span of time enables them to be more reflective on how it has influenced their daily lives and choices and they may have a greater appreciation of how valuable research is with greater insight into how it works through their own experiences of participation.

• Increased motivation? Years of navigating healthcare systems and treatments that do not always cater for the choices and needs of patients can foster a desire to contribute to improvements.

• Time constraints? Many in this group will be juggling work commitments, active social life, childcare, or caregiving for older relatives, making availability for PPI a challenge.

To help engage people in this stage of life, PRPs and research teams could offer flexible participation options, such as online engagement and flexible contributions and timeframes (such as the ability to work at a time that suits them). It would be worth making sure there is a well-funded PPI activity budget that could help offset involvement costs and sustain involvement from this group.

 Later Working Years and Early Retirement (56-64 years)

While engagement remains high, it slightly shows a slight decrease compared to the 46-55yr age group. Possible factors for this might include:

• More or less availability?  As work commitments ease (although statutory retirement ages have extended here in the UK) and perhaps, offspring become increasingly independent, more time may be available for research involvement. Alternatively, some people may have taken on support duties for Grandchildren or begin to pursue interests.

• Strong lived experience and desire to advocate for future generations?  With years of managing their own condition, individuals in this group may feel more confident contributing to research. They may also have a strong desire to help pave a better path of options and treatments for the younger generations they see coming up behind them.

• Pre-retirement and financial considerations?  Some people may still be in demanding jobs or facing financial concerns, limiting their ability to engage consistently.

  
  

Ensuring that participation for the people in this phase of life remains flexible and valued, but not burdensome, is key.  Some things that may help sustain involvement from this group are similar to those mentioned for Midlife adults but perhaps with the addition of consideration for paced or deeper involvement depending on preferences. Offering peer support as friendship circles can begin to dwindle so this could have added value and purpose through mentoring development. Deeper research training opportunities to help keep cognitive abilities sharp may also appeal

 Older Adults (65+ years and beyond)

 While still making up a significant portion of PRPs, participation does look as if it starts to decline a little in this age group. It’s understandable that as we age we may encounter the need to change or decide to scale back some activities.  Potential reasons for stepping back might include:

• Health limitations? Some may experience increasing physical or cognitive challenges that make participation more difficult.

• Digital barriers? If research involvement relies heavily on online engagement, some older adults may struggle with technology. Over time this will probably be less of an issue as younger generations will have grown along with and used it more.

• Shifting priorities? Retirement often brings ability to have a more intense focus on personal interests, travel, or family, reducing availability for voluntary commitments.

Older adults bring depth and a wealth of lived experience and insight to research.  To help keep them engaged, PRPs and research teams could: ensure accessibility (venues, duration of meetings, method of activities) and create inclusive opportunities that accommodate health needs and provide non-digital participation options where necessary.

 Key Takeaways: Making Patient Research Partnering Inclusive Across Age Groups

 I appreciate that the survey will not have reached all rheumatology PRPs across the whole of the UK and the results are only a snapshot of those taking part in research. However, I do feel it is broadly representative of the research I have taken part in over the years. The survey results I have gathered, suggests that PRP involvement is generally highest between the mid-40s and early 60s, with fewer younger adults and a bit of a decline in numbers after the age of 65yrs. Understanding these kinds of trends could help us, as PRPs, and research teams think about how to improve accessibility and inclusivity, for example:

• Targeting and more outreach to younger, diverse groups of peoples, increasing awareness, and providing opportunities to learn about what's involved and offer mentoring to boost confidences.

• Offering an enhanced range of flexible participation options to accommodate work, caregiving, and life commitments.

• Supporting older PRPs by ensuring opportunities remain accessible regardless of health, cognitive, or digital barriers.

  
  

We know that it’s important to try and engage a diverse range of peoples and ages across research projects and that PRPs enrich research with a broader spectrum of perspectives and lived experiences, all of which will lead to more inclusive and meaningful outcomes.

How do these findings resonate with your experience as a Patient Research Partner or as a Researcher?

What other strategies could help more people from different age groups get involved in research?

Join the conversation and comment below..