Patient intelligence should be designed for those who need to apply it.
Introduction to assemble's newest research initiative: Eye to Eye
Dearest Clin Dev, Clin Ops, Medical Affairs, etc. reader,
Patient intelligence is rarely designed for you.
The patient engagement and advocacy field has built frameworks. Developed metric inventories. Published guidelines. Regulatory agencies have weighed in with guidance and reflections but light on direction. The evidence has accumulated. And yet, inside (most) pharmaceutical organizations, patient intelligence still struggles to reach the people who need it — and when it does reach them, it often doesn’t move anything.
We’ve been treating this as a data problem. It isn’t just that. It’s a translation problem between the data we get and the intelligence we derive and the places we put that intelligence.
Patient intelligence should be designed for those who need to apply it. Patient engagement should be designed for those who live it. Value is unlocked in the middle.
We’ve been asking the wrong people. The research that exists largely reflects the perspectives of those who gather patient insights — the patient engagement professionals, the advocacy teams, and the consultants who design the frameworks. What we’re missing are the voices of the people who are supposed to apply them. The Clinical Operations leader who is deciding how to design a trial. The Regulatory Affairs director who is building a submission strategy. The Market Access team who is constructing a value narrative. These are the people patient intelligence is ultimately meant to serve, yet almost no one has asked them directly what would actually make it useful. (We know there are excellent exceptions to this, we’re talking about the gaps at large we see.)
The question that matters isn’t whether companies are collecting patient insights. Most are. The question is what happens after. Who receives the data? How is it packaged? Is it ready for machines and people? Does it map to anything a functional leader actually needs to do their job? Whether it arrives at a moment when a decision is still in motion or after the fact, when it can only be filed away.
We don’t have a good answer to those questions. Not because no one has asked them, but because no one (we think) has asked them, function by function, of the people who sit inside the work.
So we built a research project to do exactly that.
Introducing Eye to Eye — a research series from Assemble Health, bridging the gaps between patient data and action.
The first project asks pharmaceutical leaders in five key functions, Clinical Operations, Clinical Development, Regulatory Affairs, Medical Affairs, and Market Access, what makes patient intelligence turn into action?
We’re conducting semi-structured qualitative interviews with 25 to 40 leaders across Clinical Operations, Clinical Development, Regulatory Affairs, Medical Affairs, and Market Access — 5 to 8 per function. Participants with seven or more years of experience in their function, drawn from organizations across North America and Europe. The ones who are accountable for the decisions where patient intelligence should be showing up — and often isn’t.
Interviews are 20 minutes, conducted via Zoom, audio recorded and transcribed. We’re using Braun and Clarke’s reflexive thematic analysis, with an AI-assisted coding approach designed to let themes emerge from what respondents actually say rather than what we expect to hear. We’ll run the first set of transcripts without a codebook, build the codebook from those findings, then apply it consistently across the remainder — empirically derived, consistently applied. We’ll also conduct a cross-functional comparison to identify where consensus exists across functions and where the gaps are most significant.
We want to know what leaders actually need. Where patient intelligence is useful to them and where it falls flat. What makes them act on it versus set it aside. And whether those answers differ across functions — which we suspect they do, significantly.
The findings will be published as a white paper in Q3 2026, with the intention to adapt for peer-reviewed publication if the findings warrant it.
This project started with a question that came out of our Metrics That Matter Roundtable last fall: whose confidence are we actually trying to build? It pointed us somewhere the field doesn’t yet have a good answer. We’re going to find one.
If you work in any of these five functions and want to be part of it — or know someone who should be — we’d love to hear from you. Twenty minutes. Fully confidential. Your perspective shapes what gets published.
If you’re interested in participating or want to learn more about Eye to Eye, please reach out at research@assemble-health.com or DM us on LinkedIn. You can also sign up directly for a 20-minute interview timeslot here.
Further reading:
U.S. Food and Drug Administration. (2025, March 21). FDA patient-focused drug development guidance series for enhancing the incorporation of the patient’s voice in medical product development and regulatory decision making. https://www.fda.gov/drugs/development-approval-process-drugs/fda-patient-focused-drug-development-guidance-series-enhancing-incorporation-patients-voice-medical
European Medicines Agency. (2025, September 29). Patient experience data (PED) reflection paper. https://www.ema.europa.eu/en/patient-experience-data-ped-reflection-paper
Auwal, F. I., Clark, E. J., Copeland, C. S., & McClelland, G. R. (2025). From insight to impact: a qualitative study on pharmaceutical industry professionals’ perceptions of the value of patient engagement. Current Medical Research and Opinion, 41(7), 1261–1275. https://doi.org/10.1080/03007995.2025.2537888
Klein, B., Perfetto, E. M., Oehrlein, E. M., Weston, F., Lobban, T. C. A., & Boutin, M. (2025). Measuring and Demonstrating the Value of Patient Engagement Across the Medicines Lifecycle: A Patient Engagement Impact Measurement Framework. The patient, 18(1), 3–18. https://doi.org/10.1007/s40271-024-00713-7