In this ‘Patti’s People’ episode, Patti Peeples of The Peeples Collaborative speaks with C. Daniel Mullins (Professor and Executive Director, the PATIENTS Program, University of Maryland School of Pharmacy) about the gap between involving patients in research and letting them change it.
Key themes:
- Patient centeredness in language versus in practice, and the question that separates them: what did you do differently because of what you heard?
- Where engagement breaks down: patients who are heard but not inspired, and inspired but not equipped to contribute
- Why a validated instrument is not automatically fit-for-purpose in a new population or context
- Patients as experts alongside clinicians and KOLs, and why the protocol lock is a scheduling failure rather than a regulatory one
- Respect and trust as the measurable outcomes of engagement, from earned authorship to repairing trust when it breaks
Questions:
00:00: Introduction
01:16 Are we at risk of confusing patient centered rhetoric with truly patient-centered research?
04:26: What does authentic patient engagement look like when it is done well?
10:04: What would a true long-term relationship with communities look like?
13:46: Should sophisticated patient contributors be treated more like key opinion leaders in the evidence-generation process?
17:46: How should medical affairs think differently about patient engagement?
21:42: Is the real test of patient-centered research whether researchers are willing to change the protocol? Does this apply to HEOR studies as well as trials?
27:32: How do we balance comparability with older literature against better measurement?
30:38: Are patients becoming more confident in questioning researchers and clinicians, and what does that mean for more equitable partnerships?
34:10: Did you draw on existing literature or other models when developing your approach to patient engagement?
35:45: Is mixed methods research the missing translation layer between patient engagement and better HEOR?
38:21: Has your work in patient oriented research changed your overall approach to research? What lessons have carried across?
40:59: Where is the field still weak?
42:19: Where can AI genuinely improve patient-centered evidence generation, and where might it amplify blind spots?
45:20: What lessons should HEOR take from past biased algorithms?
47:52: Can you share an example of a challenging group you engaged with, and what you learned from that experience?
50:32: Rapid Fire Questions
C. Daniel Mullins
Professor and Executive Director, the PATIENTS Program, University of Maryland School of Pharmacy
Daniel Mullins is a Professor and Executive Director of the University of Maryland PATient-centered Involvement in Evaluating effectiveNess of TreatmentS (PATIENTS) Program, a community-academic partnership for patient-driven research. Dr Mullins has received nearly $30 million in funding as a Principal Investigator from AHRQ, FDA, NCI, NHLBI, NIA, NIMHD, the Patient-Centered Outcomes Research Institute (PCORI) and various patient advocacy organizations and pharmaceutical companies. At the University of Maryland Baltimore (UMB), he received the Dr Patricia Sokolove Outstanding Mentor Award and the Dr Martin Luther King Jr. Faculty Diversity Award. He was named Researcher of the Year at UMB and was awarded a University System of Maryland Wilson H Elkins Professorship. Among his accolades are Association of Black Cardiologists’ Dr Daniel D. Savage Memorial Science Award, ISPOR’s Avedis Donabedian Lifetime Achievement Award and Marilyn Dix Smith Leadership Award, the American Association of Colleges of Pharmacy (AACP) Paul R Dawson Award for Excellence in Patient Care Research and a Baldrige Foundation Award for Leadership Excellence in Health Care.
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