An exercise for education of patient involvement in biomedical research

What problems were adressed? Many early-career biomedical researchers are internally motivated to involve patients in research. Others feel external pressure from funders to do so, which may feel unfamiliar and even uncomfortable—some question how individuals without formal biomedical training could contribute meaningfully to scientific research. Across the spectrum, researchers often lack a clear understanding of what patient involvement entails at different phases of the research process. As educators on patient involvement, we struggled to address the value of involvement while researchers might still be unfamiliar, uncomfortable or hesitant. To support both the curious and the cautious, we developed an exercise to challenge researchers to explore the value of patient involvement in biomedical research.

What was tried? We designed a 40-minute exercise inspired by a table from The Lancet series ‘Increasing Value, Reducing Waste’.1 The trainer introduces the table outlining 15 causes of research waste, grouped across five phases of research: conceptualisation, study design, research management, reporting and dissemination. Examples of the issues in the table are as follows: low-priority research questions addressed, inadequate statistical power, burdensome regulatory processes, publication bias and unclear intervention description. In this brief introduction, participants learn that up to 85% of biomedical research is considered wasteful. This alarming figure often diffuses initial scepticism or defensiveness about involving patients. Participants are divided into groups of three or four and given an A3 printout of the table, along with two green and two red stickers per group. Their task is to place green stickers where they believe patient involvement could reduce research waste and red stickers where it might be less helpful. Groups discuss their choices for 15 minutes, then present their reasoning in a whole-group discussion. As trainers, we emphasise that there are no right or wrong answers and avoid making evaluative comments. Participants consistently place green stickers in the early phases, particularly on items related to low-priority research questions and unaddressed important outcomes. Dissemination (the final phase) also attracts green stickers. Some participants even propose adding implementation as an extra phase after dissemination, where patients could play a role. Red stickers tend to be placed on more technical and administrative challenges, such as insufficient statistical power, regulatory hurdles and publication bias. These patterns fuel rich, reflective discussions.

What lessons were learned? Most groups conclude that patient involvement is most feasible and valuable in the early stages of research and more challenging—but not impossible—as projects become more technical. This view aligns with published literature. Participants value the hands-on, discussion-based format of the exercise. They appreciate its non-judgmental approach, which creates an openness to thinking beyond the moral imperatives of patient engagement. Many express that the exercise helps clarify where and how patient input can matter. As trainers, we observe a shift in tone throughout the session, from defensiveness to curiosity. We build on this openness in the rest of our training programme. We encourage other educators to try this exercise and adapt it to their contexts. Sharing different experiences can strengthen our collective understanding of what meaningful patient involvement looks like in biomedical research.