Taking a thoughtful, supportive approach to patient and public involvement and making sure to evaluate its impact could help make it more meaningful for everyone in involved, according to a new learning report from THIS Institute.
Involving patients and the public in research examines a practice that has grown substantially in recent years. But despite this growth, and wide recognition that people with lived experience make important contributions to research, there is limited agreement on how patient and public involvement should be done.
In partnership with RAND Europe, THIS Institute took a closer look at patient and public involvement by reviewing relevant literature and interviewing experts in the field. Their findings highlight how patients and the public are contributing at all phases of the research process, with the potential for positive impacts for the research and for themselves.
“Patients and the public have a lot to offer to ensure that research is relevant, designed and executed in a way that is most likely to lead to desired impacts,” says Sonja Marjanovic, project leader and head of RAND Europe’s partnership with THIS Institute, and one of the report’s authors. “Through close collaboration and investment in building and nurturing shared goals, clear roles and trusting relationships between researchers, patients and members of the public, this potential can be fully realised.”
To find the right contributors, it’s helpful to think about what you want patient and public involvement to achieve.
Now that patient and public involvement has become an important part of the research process, the report identifies a number of ways to ensure it is done effectively and meaningfully. Funding involvement adequately, clearly communicating about involvement opportunities, and providing better support and training to people who want to get involved could all be important steps, the report notes.
But the evidence also suggests that ‘meaningful involvement’ doesn’t mean involving everyone, every time. Mandating involvement in all circumstances, for example, can actually encourage tokenistic attitudes and have negative consequences for the research and for contributors. Instead, the report suggests a more thoughtful approach to involvement.
“To find the right contributors, it’s helpful to think about what you want patient and public involvement to achieve. And that can vary dramatically from project to project,” says Joann Leeding, head of patient and public involvement and engagement at THIS Institute.
Patient and public involvement can help achieve various positive impacts, the report suggests, but much of the literature focuses on its potential impacts, rather than measure impacts. This may be the case because involvement activities are often not monitored or evaluated, leaving a gap in the evidence base.
“The potential is clear. Patient and public involvement can make research more relevant and empower contributors. But evidence of that actually happening is currently lacking,” says Leeding. “If we commit to monitoring and evaluating involvement more consistently, we may learn a lot more about the true value of bringing diverse perspectives into research.”
This latest report follows a similar study by THIS Institute and RAND Europe on Involving NHS staff in research, released earlier this year. The findings from both reports are helping shape THIS Institute’s strategy for involving NHS staff and patients in studying how to improve healthcare.
What they’re saying
“Patients and their families often have important ideas about what research would most benefit their lives. Co-producing healthcare research with patient organisations can ensure the research question and design are relevant, acceptable and practical to participants. In turn, managerial-level involvement of patients can build trust with the wider patient population, improving research promotion, recruitment, participant retention and dissemination. The approach to patient-led co-production should be flexible, building on individual expertise and specific to the research question.”
Dr Thomas F Hiemstra, University Lecturer in Trials, School of Clinical Medicine University of Cambridge; Director, Patient Led Research Hub
“This report is a timely exploration of how patients and the public might be involved more meaningfully in research. The conclusions of the report – particularly the lack of clarity on what works in patient and public involvement, for whom and why – represent a valid ‘call-to-arms’ for both researchers and practitioners, to further build the evidence base for involving and engaging with patients and the public.”
Dr Jane O’Hara – Associate Professor, University of Leeds/Bradford Institute for Health Research
“Although involving patients, carers and members of the public as partners in medical research is not a simple as it might at first seem and is certainly not without its challenges, it would be a shame if it were dismissed out of hand and not afforded some brave and concerted experimentation and evaluation to discover the full extent of its potential merit.”
Angela King, Patient Advocate and carer