Rethinking Patient and Public Involvement: Why Process Matters as Much as Impact in Preclinical Research
Key Insights
Patient and public involvement (PPI) is now a mandatory requirement for most UK medical research funders, including detailed PPI plans in grant applications.
Basic, preclinical, and laboratory-based research presents unique PPI challenges due to its distance from patient lived experience, yet offers significant benefits for research relevance.
Experts argue that evaluating the PPI process is as important as measuring its impact, emphasizing continuous improvement and meaningful engagement over simple justification.
Patient and public involvement (PPI) has become an essential component of medical research, with most UK funders now requiring detailed PPI plans as part of grant applications. Yet as the drive to measure PPI's impact intensifies, experts are calling for equal attention to be paid to the process of involvement itself—particularly in basic, preclinical, and laboratory-based research where patient engagement remains underrepresented.
The Oxford Cancer PPI Team is currently focused on supporting PPI in these preclinical disciplines, which often lack direct patient or public-facing elements. "These disciplines, which are often not directly patient or public-facing, can sometimes seem harder to explain in lay terms and may feel too distant from people's lived experience to benefit from patient and public input," notes Julliet, a researcher involved with Oxford Cancer's PPI initiatives.
Despite these challenges, PPI in preclinical research offers distinct advantages. Because basic science researchers do not routinely communicate with patients and members of the public, PPI can serve as "an important reminder of, and connection to, the wider context in which their research sits." This connection helps non-clinical researchers gain a better understanding of what truly matters to people affected by cancer, ensuring that research is grounded in lived experiences and therefore more relevant and impactful.
Beyond improving research quality and relevance, PPI can be motivating for researchers themselves. It provides an opportunity to engage with people who are genuinely interested in the work and raises awareness of the value and importance of preclinical and basic research as a foundational pillar of modern healthcare.
The Shift from Measuring Impact to Evaluating Process
Gary Hickey, senior research manager for the National Institute for Health and Care Research (search) at the University of Southampton, argues that the current emphasis on measuring PPI impact stems from the influence of evidence-based medicine, where involvement is treated as "an intervention that is measurable and quantifiable." This approach, he suggests, comes with several problems.
"It seems odd that the focus is on measuring the impact of one group of stakeholders. There is not an emphasis on measuring the impact of, for example, researchers and clinicians. It is assumed that they improve the research," Hickey writes.
Furthermore, PPI will not always improve research in measurable ways. In some cases, public contributors may simply verify that existing materials and approaches are already excellent—a valuable contribution that traditional impact metrics would fail to capture. "The value of public contributors in such a scenario is not in improving decision-making but in verifying the work of researchers; and this needs to be captured in any evaluation," Hickey notes.
A Framework for Meaningful Evaluation
Rather than focusing solely on outcomes, Hickey advocates for evaluating the PPI journey itself—assessing whether public contributors have genuine opportunities to express their views and whether those views are listened to and valued. Tools such as the cube evaluation framework and the ARC West PPI log can assist in this process evaluation.
The evaluation should include four key components: assessing adherence to principles underpinning involvement using frameworks like the UK Standards for Public Involvement; gathering public contributors' views on what has worked and what has not; using findings to drive continuous improvement; and feeding back to public contributors on both the impact of their contributions and any changes to the PPI process.
"Sharing the differences made is polite and helps public contributors feel valued and motivated to stay involved," Hickey emphasizes. This feedback loop transforms PPI from a box-ticking exercise into a meaningful, ethical practice grounded in the principle that people should be involved in decisions that affect them.
For researchers in preclinical and laboratory-based settings, where the connection to patient experience may feel most tenuous, this process-oriented approach to PPI may prove especially valuable—bridging the gap between bench science and the people it ultimately serves.