Going Beyond the Questionnaire

Over the years, I’ve led many successful patient insights projects using time-tested methods like focus groups, interviews, and surveys. They are reliable ways to learn what patients experience and think. However, these techniques only capture part of the overall picture. What I’ve learned is that involving patient experts right from the start can build on what we already do well, without throwing out the methods we trust.

When Patients Become More Than Participants

I recently worked with Gary Ho, founder of the Gout Support Group of America. His community has over 16,000 members—a sign that many people want guidance from someone who truly understands their disease. Gary joined us as an active partner in the market research study, not just another interviewee or respondent.

“We are not just input providers. We are experts in our condition.”

- Gary Ho, Merakoi Patient Expert in Gout

Because Gary was involved from the beginning, we gained a richer understanding of everyday issues that might otherwise remain hidden. His input helped translate findings into practical solutions…ones that actually hold up in the day-to-day decisions patients face.

And Gary isn’t alone in taking on this kind of role. In other fields, patient communities have taken the lead as co-researchers e.g. designing studies, shaping protocols, even analyzing data. The Patient-Led Research Collaborative produced one of the first comprehensive studies on Long COVID, fully authored and driven by patients themselves. Their findings have since been cited in both clinical guidance and national policy debates.

Lived Disease Researchers Create Better Insights

Even the best-designed surveys and discussion guides can leave gaps. This is where patient experts help. They bring real-life knowledge about hurdles people face, such as feelings about new treatments, hidden costs of care, and daily challenges. 

“The patient community can help industry find barriers and needs that often go unnoticed.”

- Gary Ho

In one project, our client said the patient-driven insights were “more concrete and more aligned with actual patient needs,” which helped them make decisions they felt confident about. Instead of sorting through information that felt disconnected from daily life, they had a roadmap tied to real patient stories.

Similar results have been reported by others. The PREFER project, co-led by patient organizations and academic partners in Europe, showed how co-designing preference studies with patients improved both regulatory relevance and sponsor clarity. Likewise, CreakyJoints' ArthritisPower registry allows patients to set the agenda for what gets measured—leading to more timely insights on everything from medication side effects to vaccine hesitancy.

Co-Creating Research Plans

You do not need to stop using surveys or focus groups. Instead, try inviting patient experts to help plan each step. Ask them to review your research plan or co-create discussion guides with you. If you only include them when the questions are already written, you might miss the deeper issues that patients actually worry about. In my projects, the biggest breakthroughs often happen when patients are part of the planning stage, not just involved at the end. 

 In a study about gout, we initially focused on lifestyle concerns and medication problems. Gary highlighted specific challenges that did not appear in our original list of interview questions. By adding these points, we uncovered emotional and social aspects of gout we had not fully considered. Afterward, the client told us the final insights were more concrete and useful than they had expected. We did not abandon standard methods; we simply gave them more depth by bringing Gary into our project team.

Why This Matters to You

If you’re someone who needs to understand how patients think, act, and feel—whether you’re designing a clinical trial, developing a new product, or deciding on a therapy approach—you can gain unique advantages by involving patient experts. Working with them helps you see beyond the basics of “what” patients do, to discover “why” they do it. This can point you to clearer, more informed choices for your business or project.

My own experiences have shown me how powerful it is when decision-makers invite patients to share the stage. They hear direct accounts of what daily life is really like and can pivot strategies based on credible, authentic input. Traditional research alone often struggles to capture these subtle but crucial details.

Sandra

p.s.

If you’re curious about the deeper layers of patient collaboration touched on in this article, check out Gary Ho’s Interview on the Merakoi Voices Podcast.

About Merakoi

At Merakoi, we believe the best healthcare solutions come from those who live with the conditions every day—patients. We connect life sciences companies with patient experts to co-design better treatments, trials, and healthcare innovations. Need insights that actually matter? Let's chat!—and remember: your questionnaire can’t raise its hand when you miss a question.