At the Vivensa Foundation, we believe that the best research is done with people, not for them. That’s why patient, carer and public involvement and engagement (PPIE) is at the heart of our mission. It’s about bringing together research expertise with the lived real-world perspectives of patients, carers and the public. This ensures that the questions our award-holders ask, the studies we fund, and the solutions we seek are truly relevant and impactful for older adults.
We spoke with three researchers who are putting this into practice:
- Professor Chrissy Hammond, University of Bristol, who was awarded support under our Ageing Immune System funding call. Her team is studying how neutrophils — white blood cells that fight infection and help kick-start bone repair — behave differently in older people with frailty.
- Dr Helen Wright, University of Liverpool, a co-investigator on the project who specialises in ageing science and musculoskeletal health, with a particular interest in the role of neutrophils in the pathogenesis of inflammatory diseases.
- Dr Genna Abdullah, University of Liverpool, a postdoctoral researcher on the project who began her journey with the Vivensa Foundation as one of our funded PhD students.
Why PPIE matters
“As scientists, we often start with a research question that interests us, like a favourite gene or signalling pathway,” explains Helen. “But when you talk to patients, their priorities are different. They want to know how to take fewer tablets, how to stay active, what exercises help with arthritis, or whether diet can make a difference.”
Helen’s words capture the essence of PPIE: making sure research asks the right questions by actively involving patients, carers and the public in the research process itself. “That link, that forum where we bring scientists and those with lived experience together, is so important,” Helen stresses. “Who are we to assume what life is like with a particular condition?”
Chrissy echoes this, sharing a practical example from her own work. “One area that came out of speaking to patients was timing — when people take medication. Rather than adding a new treatment, what if we could improve outcomes by changing when existing drugs are taken?” Her team is now studying how circadian rhythms affect the immune and skeletal systems. “A small change, like taking medicine in the morning instead of the evening, might make a big difference.”
For early-career researchers like Genna, PPIE days offer crucial insights that would not be apparent from lab work alone. “I once spoke to someone who avoided the doctor because they didn’t want more medication,” she recalls. “It made me think differently about the realities people face when living with multiple conditions.”
Overcoming the hurdles in embedding PPIE
Despite its benefits, integrating PPIE isn’t always straightforward. Funding is a common barrier, especially when involvement is needed before grant applications are submitted.
“A lot of the time, you’re trying to do PPIE work before you’ve even written your grant application,” says Helen. “This means you don’t have any funding to pay for the PPIE activity that would actually help you get the grant.”
To tackle this, Helen’s department developed a “rolling departmental PPIE group,” which has been instrumental in sustaining their efforts. “Once we had it running, the first group of researchers were able to get grants, and then contribute to funding the next meeting,” she explains.
To help with exactly this issue, our Academy Ignition Fund offers flexible awards of up to £5,000 to support early-stage involvement and engagement activities.
Accessibility is another challenge. During the pandemic, meetings shifted to being conducted online. “While we lost one person who had been a regular at the in-person meetings, we gained eight or nine regular participants after going online. The reduced travel and time commitment made sessions far more accessible, especially for those with chronic conditions.”
Chrissy also raises an important point about managing expectations: “One of the barriers we’ve experienced is figuring out how much a project can realistically be shaped by participant input. Grant applications often come with specific, pre-defined outcomes, so it’s usually easier to involve people in shaping future projects rather than the one currently underway. That’s why the timing of PPIE matters.” This highlights the value of long-term involvement and engagement, where early conversations can truly shape what comes next.
Tips for meaningful engagement
How can researchers get truly meaningful feedback from older populations?
“Tailor your approach to the group,” advises Genna. “At a frailty-focused event, most participants don’t use technology. They read newspapers or preferred traditional media. Put your research where your audience is — there’s no point making a flashy website or posting on a Facebook page if your target group doesn’t go online.”
Helen’s advice is to co-create accessible materials. “We created cartoon-style leaflets explaining osteoarthritis in a way that was accessible to a lay audience. Iterative feedback from patients ensured we answered the questions they really wanted to know.”
Genna has found that including participant voices in research outputs can be incredibly impactful and describes turning questionnaire responses into a “patient voices” poster. “We also asked our patient partners to judge the scientific posters at an away day. It gave them a genuine role and gave researchers a chance to practice communicating their science.”
The ideal: Hand-in-hand from the start
When asked what ideal PPIE looks like, Helen says: “A blank sheet of paper. Start by asking participants what they want to research. That’s rarely possible, but it’s the goal.”
Chrissy calls for more interdisciplinary approaches and long-term engagement. “If we really want transformational impact for patients, carers and the public, we need to involve them throughout the entire process – right through to publication.”
Both stress the need for funding to support this deeper level of involvement. “If you want to involve people fully, you need funding,” Helen says. Chrissy adds, “You can’t expect people to give up their time for free. Vouchers are fine, but we should also include people as co-applicants and pay them accordingly.” At the Vivensa Foundation, we recognise this, which is why appropriate PPIE costs can be included in all our funding applications.
Chrissy also highlights a crucial point about diversity: “We still need to get better at engaging a more ethnically diverse group of people, especially in older populations. Some communities have historical reasons for being more skeptical of medical research, and we need to be proactive in tackling this head-on.”
More than a box-ticking exercise
The message from Helen, Genna, and Chrissy is clear: PPIE isn’t a box-ticking exercise. It’s a catalyst for more relevant, impactful research. Their joint neutrophil project is just one example of how lived experience can shape research questions, refine study design, and ultimately improve outcomes for older adults.
At the Vivensa Foundation, we’re proud to fund work that puts people at the heart of discovery — from nurturing PhD talent to enabling ambitious projects grounded in real-world needs. Because when researchers and those with lived experience work hand-in-hand, we can unlock solutions that truly make a difference.
If you want support with implementing PPIE into your own research, listen to this webinar recording from Dr Toby Ellmers. Members of the Vivensa Academy can also apply for support with PPIE. Applications are open year round – find out more here.
