Not Just Patients
Hello and welcome to Not Just Patients, a podcast where we break barriers to meaningful patient involvement in healthcare.
We’re your hosts, Caitlin Rich and Clarinda Cerejo. We’re both rare disease patients and qualified patient experts. And we are so much more.
Join us and our guests as we challenge patient stereotypes, highlight successful collaborations in healthcare, and share energizing tales of turning adversity into advocacy.
Have feedback or suggestions for us? We'd love to hear from you! Email us at info@notjustpatients.com or find us on LinkedIn.
Not Just Patients
Developing Patient-Centred Outcomes Measures | Jennifer Bright
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Join us for an enlightening conversation with Jennifer Bright, President and CEO of the International Consortium for Health Outcomes Measurement (ICHOM), where we talk about redefining value in healthcare by measuring what truly matters to patients.
Jennifer is a long-time leader in patient-centered health policy and outcomes, with past executive roles at the Innovation and Value Initiative, the Society for Healthcare Epidemiology of America, and Mental Health America. She is also Founder and President of Momentum Health Strategies, Chair of the Board at Mental Health America, and an editor for the American Journal of Accountable Care and the Journal of Patient Experience. Drawing on both her professional expertise and deeply personal experiences with her parents’ cancer journeys, she brings a powerful perspective on why patients must be at the center of every health decision.
In this episode, we unpack the world of outcomes and outcomes measures—what they are, why traditional survival-focused metrics are not enough, and how patient-centered outcomes can transform clinical care, research, and policy. Jennifer shares her personal story, explains how ICHOM co-creates standardized outcome sets with patients and clinicians worldwide, and explores the barriers and opportunities in making outcomes-based, patient-centered care the global norm.
Whether you’re a patient, clinician, policymaker, or researcher, this episode offers a hopeful, practical vision for measuring and delivering better health for all.
Chapters:
0:00 - Introductions and episode overview
1:30 - Defining outcomes and outcomes measures
6:50 - What really matters to patients
9:26 - Jennifer's personal story and motivations
14:23 - An overview of ICHOM's work
17:09 - Patient involvement in developing outcomes measures sets
19:03 - The ICHOM process for outcomes measures sets
26:57 - Value and real-life applications of outcomes measures
29:52 - Eligibility criteria for patient involvement
34:30 - Using outcomes measures for shared decision-making
39:54 - Global adoption of outcomes measures
43:32 - Overcoming barriers and challenges
50:52 - Vision for the future
53:25 - Advice for patients looking to get involved
55:38 - Reflections with Caitlin and Clarinda
Resources and abbreviations:
- Book: Redefining Healthcare
- National Health Council Fair-Market Value Calculator
- ICHOM Patient Partner Alliance
- Swiss Government National Quality Strategy for Healthcare
- NHS - National Health Service, UK
- CMS - Centers for Medicare and Medicaid Services, US
Have feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: info@notjustpatients.com
