Sketching the future together: From patients to partners in research

Background: Despite growing emphasis on patient and public involvement (PPI) in health research and service design, citizen science remains underutilised in integrated care. Participatory efforts are often treated as a “ticking-box” requirement within grant proposals, rather than as a genuine driver of inclusion. This workshop aims to challenge that paradigm by inspiring and equipping participants to embed citizen science meaningfully into integrated care projects.

In our own work, we collaborate with a group of citizen scientists with type 2 diabetes and varying levels of health literacy to explore ways of improving diabetes care in the Netherlands. Using creative methods, such as the “Crazy 8’s sketching” exercise, we have found that this collaborative approach encourages active participation and leads to meaningful, practical research ideas.

Audience We encourage both academic and non-academic people to join the workshop. For researchers, the session offers insight into how to broaden research methods by meaningfully engaging citizen scientists in the whole research cycle. For citizens, the workshop provides transparency about the potential roles, expectations and contributions of being a research partner rather than a passive participant, and space to voice their needs for inclusive engagement in research.

Approach: Our 90-minute workshop will be as follows:

1.Opening exercise (+/-20 min): We start with a creative ice breaker utilising the “Crazy 8 sketching” from design thinking. Participants individually sketch approximately 8 ideas in response to the question “How can you involve patients/the public in your research?” and subsequently discuss these within small groups.

2.Brief conceptual framing (+/-15 min): Facilitators provide a concise overview of citizen science, including its definition and relevance to integrated care.

3.Case presentation (+/-10 min): We present a short video with a narrative from our citizen scientists. This video will show challenges and successes in involving active patient participation in research from the patient’s perspective.

4.Applied redesign (+/-25 min): In small groups, participants revisit their initial sketches in light of theory and the case, adapting or extending them. They can relate their ideas to their own research contexts or work settings.

5.Recommendations on PPI (+/-15 min): Each group distils one or two actionable recommendations or design heuristics around PPI in research.

6.Plenary wrap-up (+/- 5 min): Facilitators summarise key patterns linking diversity, equity, and inclusion in integrated care.

We encourage mixing academic and non-academic participants in groups to diversify perspectives.

Outcomes: By the end of the session, participants will:

• Gain clarity on citizen science, beyond superficial participation and tokenism.
• Appreciate how citizen science can enrich integrated care research and innovation, especially in diverse and underrepresented communities.
• Acquire a simple, adaptable participatory design mindset and “starter heuristics” for involving citizens meaningfully (i.e. “do the work before doing the work”).
• Leave motivated and mindful to integrate citizen science elements into their own work, recognising that inclusive engagement is fundamental in research.