2025 Methods Summit
Exploring Patient-Centered Value Research from Definition to Dissemination
March 19, 2025 - Washington, DC
Join us for the 6th Annual Methods Summit, a premier one-day event dedicated to advancing patient-centered value research. This year’s summit provides a robust exploration of value research, guiding participants through every phase — from defining value and engaging patients to implementing and refining research strategies informed by real-time data.
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Agenda
Wednesday, March 19, 2025
8:30 AM || Registration
9:00 AM || Welcome and Fireside Chat
This opening discussion will provide a foundational framework for the day’s proceedings aligning perspectives on what defines patient-centered value in healthcare research. This session will set the stage for a dynamic exchange of ideas, ensuring a shared understanding of principles that drive impactful, patient-focused research.
Speakers:
- Jason Spangler, MD, MPH, FACPM, President & CEO, Center for Innovation & Value Research
- Ilisa Halpern Paul, MPP, Senior Policy Advisor, Co-Lead Health Policy Team, Venable LLP
9:30 AM || Beyond the Metrics: Defining Patient-Centered Value Research
Gain a multi-stakeholder perspective in this session that will outline and clarify what constitutes patient-centered value in healthcare research, establishing foundational principles and exploring varied perspectives on measuring patient value.
Speaker:
- Carissa Doran, PhD, MPA, BSN, Research Scientist, Health Economics and Outcomes, Northwell Health
10:30 AM || From Participants to Partners: Patients as Co-Creators in Research
Uncover transformative approaches for engaging patients as active collaborators in research, fostering more meaningful and impactful outcomes. This session will showcase innovative methods for partnering with patients as research design co-creators, emphasizing the benefits of early engagement in generating relevant, actionable findings.
Speakers:
- Beth Gore, PhD, CEO, The Oley Foundation
- Richie Kahn, MPH, Co-Founder & COO, Canary Advisors
- Brandy Farrar, PhD, MS, Managing Director, American Institutes for Research
11:30 AM || Lunch
12:30 PM || The Power of Patient-Data: Leveraging AI to Address Evidence Gaps in Rare Diseases
Learn how patient data can reshape research in real time by examining the utilization of AI to address evidence gaps in rare disease research. This session will discuss strategies for implementing and continuously refining research, leveraging patient data to ensure research stays aligned with evolving patient needs and clinical goals.
Speakers:
- Sarita Edwards, MHA, CEO & President, The E.WE Foundation
- Harsha K. Rajasimha, PhD, MS, CEO & Founder, Jeeva Clinical Trials, Inc
- Simu Thomas, PhD, VP, Global Head HEOR, Global Medical Communications & Training, Alexion AstraZeneca Rare Disease
1:30 PM || Turning Data into Action: Communicating Research to Drive Healthcare Change
In an era of rapid scientific advancement, effective communication is crucial for translating research findings into tangible improvements in patient care. This session will explore effective ways to communicate research findings to diverse audiences and assess the real-world impact of patient-centered research on advancing healthcare outcomes and value.
Speakers:
- Kimberly Westrich, MA, Chief Strategy Officer, National Pharmaceutical Council
- Jessica Johnson, MPH, Director, Community Research & Engagement, National Eczema Foundation
- Bridget Doherty, MPH, MS, Director of Access and Policy Research, Johnson & Johnson Innovative Medicine
2:30 PM || Town Hall
Speaker:
- C. Daniel Mullins, PhD, Professor and Executive Director, PATIENTS Program, University of Maryland School of Pharmacy
2:45 PM || Closing Reflection
DETAILS
When:
Wednesday, March 19, 2025
9:00 AM – 3:00 PM ET
Where:
Venable, LLP
600 Massachusetts Ave, NW
Washington, DC 20001
(In-Person and Live Stream)
The 6th Annual Methods Summit is partially funded through generous support from Alexion, AstraZeneca Rare Disease and Pfizer. Unrestricted funds from the Center’s diverse membership also supports this work.
Speakers
Bridget Doherty, MPH, MS, is a strategic policy, research, and communications professional with extensive experience in pharmaceuticals, medical devices, and healthcare publishing. Currently serving as the Director of Access and Policy Research at Johnson & Johnson Innovative Medicine, she develops and executes impactful policy research and scientific engagement plans aimed at developing an evidence-based understanding of U.S. healthcare policies’ impact on patients and the healthcare ecosystem. With a combined background of policy research and communications, Bridget specializes in translating complex concepts into actionable insights for diverse audiences.
Among her key contributions include the first comprehensive analysis of the FDA Accelerated Approval Program's impact on patient outcomes in oncology, providing evidence that approximately 263,000 life years were gained for cancer patients. Bridget has published extensively on pivotal topics such as drug pricing policies and patient access, and she has led successful engagement strategies with advocacy and government relations partners. She also led global communications and public affairs for J&J’s Diabetes Device Unit. Prior to her career at Johnson & Johnson, Bridget served as Healthcare Policy Manager at GlaxoSmithKline, where she developed policy strategies to enhance patient access to care and improve health outcomes across various disease states. Before entering the pharmaceutical and medical device industries, Bridget had a 15-plus years career as a journalist and editor.
Sarita Edwards is the CEO & President at the E.WE Foundation, a global healthcare advocacy organization for families impacted by Trisomy 18 and other rare diseases. Sarita began her advocacy and public policy efforts after receiving a rare genetic diagnosis for her unborn son. Sarita is recognized as a world's top patient expert and social health ambassador. She is an award-winning advocate, global speaker, and host of the Being Rare Podcast. Sarita holds a certification in Mental Health First Aid Instruction, a Bachelor of Science in Health Science, a Master’s in Healthcare Administration, and she's in the final months of completing her Doctorate in Health Science and Research. Sarita lives in North Alabama with her husband and five children.
Brandy Farrar, PhD, MS has over 18 years of experience as a qualitative methodologist whose primary expertise is in identifying evidence-based practices for improving health. Dr. Farrar routinely deploys a variety of methodologies to engage interested parties in designing, implementing and evaluating policies and programs. Examples of Dr. Farrar’s current and recent work include using human centered design principles to understand and advocate for the unique needs of individuals who are dually enrolled in Medicare and Medicaid, evaluate a health workforce diversity and pipeline initiative, and facilitate strategic planning to build community capacity to address COVID-19 disparities. In addition, Dr. Farrar is taking a participatory action research approach to evaluating a fund designed to promote health equity through economic mobility. Dr. Farrar is a managing director at the American Institutes for Research and an adjunct professor at the George Washington University Milken Institute School of Public Health. She received her doctoral and master’s degrees in Sociology from North Carolina State University and her bachelor’s degree in Sociology and African American Studies from the University of North Carolina at Chapel Hill.
Jessica K. Johnson is the Director of Community Research & Engagement at the National Eczema Association (NEA). In this role she leads the strategic development, growth, and implementation of NEA’s survey research, real-world data activities and NEA’s Ambassador’s Program, connecting over 500 patient and caregiver members across the US to opportunities to share their valuable lived experience perspectives with researchers, biopharmaceutical companies, legislators, policymakers, and others in the community. Prior to joining NEA, Jessica was a senior researcher within the Center for Community Health at Northwestern University Feinberg School of Medicine, where she both led, and contributed to, the design, implementation and dissemination of a dynamic patient-centered research portfolio that engaged patients and stakeholders nationally. Johnson holds a master’s in public health degree from SUNY Upstate Medical University and Syracuse University and brings over 12 years of experience in the science and practice of community-based participatory research (CBPR) and patient-centered outcomes research (PCOR).
Harsha is a serial entrepreneur, postdoctoral data scientist trained at NIH, global patient advocate, and investor. As the founder and CEO of Jeeva Clinical Trials Inc.(https://jeevatrials.com), Harsha is pioneering an AI-driven unified platform for sponsors and CROs to execute patient-centric clinical trials with efficiency and universal accessibility. As the Founder & executive chair of the Indo-US Organization for Rare Diseases (https://indousrare.org), Harsha is forging a new era of cross-border cooperation among various stakeholders of rare diseases in the US, India, and globally by convening the annual Indo US bridging RARE Summit (https://summit.indousrare.org) and the Abbey Meyers Khushi Bridging RARE Awards Gala.
Harsha’s 20 years of experience in precision medicine data research spans academia, federally funded research, biopharma R&D consulting, and multiple startups. Harsha made bold career moves after losing a newborn child to a rare congenital disease in 2012 and his younger brother with juvenile diabetes in 2017. He decided to apply his years of postdoctoral training at NIH and FDA to combat rare diseases.
Harsha has maintained academic affiliation at George Mason University since 2012 and has authored 20+ publications, book chapters, and patents. Harsha’s work has been recognized by Lead India Foundation 2020, a travel award to join the NGO Committee on Rare Diseases at the United Nations headquarters, New York City in Feb 2019, NTT DATA Healthcare Life Sciences Silver award for outstanding achievement 2017, and Sanofi Genzyme patient advocacy leadership award 2016. Harsha earned his M.S. in Computer Science (2004) and Ph.D. in Genetics, Bioinformatics and Computational Biology (2007) from Virginia Tech.
Beth Gore, PhD, is a national patient safety advocate, author and speaker who represents patients through patient associations, serving on boards, and being a voice of the patient on national committees and task forces with over a decade of direct vascular access and parenteral and enteral focus. She is the current Executive Director of The Oley Foundation, a home nutrition therapy community and advocacy Group and has a PhD in Training. Beth and her husband Dan life in Tampa, Florida with their six children who are adopted with special needs, including a son who lives with a central line for lifetime nutrition support.
A health policy professional by training, clinical researcher by trade and patient advocate by necessity, Richie Kahn has spent the last 15 years working across the industry to reduce the time it takes to bring promising new treatments to the patients that need them most. As Co-Founder & COO of Canary Advisors, Richie partners with biopharma, nonprofit, and regulatory stakeholders to better align clinical development programs with patient wants and needs.
Simu Thomas is the Vice President and Global Head of Health Economics & Outcomes Research, Global Medical Communications and Training at Alexion, AstraZeneca Rare Diseases. Simu brings 25 years of leadership experience in the areas of Value, HEOR, RWE and Access, building and leading capabilities across the world.
Prior to Alexion, Simu held several leadership roles at Novartis, where he was the Global Head of Value & Access for Rare Diseases, Global Head for the Cell & Gene Therapy Unit, where he developed the Value Access strategy for rare diseases and the first CART therapy approved in the world. He was the founding architect of the IMI HARMONY data initiative with public and EFPIA private partners in Europe, as the leading industry partner in the consortium. Simu ran the Economic Modeling organization at Novartis, and was the Global Head of HEOR for Neuroscience and Ophthalmolgy franchises and Head of HEOR US Oncology.
He has authored more than 35 manuscripts and 80 congress presentations and co-authored book chapters in the field of Health Economics. Simu holds a PhD in Pharmaceutical Economics from the University of Maryland and an MS in Pharmacy Administration from the University of Toledo and Pharmacy degrees from Birla Institute of Technology and Sciences. Simu also serves as Adjunct Assistant Professor at University of Maryland and Rutgers University of New Jersey.
Kimberly Westrich, MA, is the Chief Strategy Officer of the National Pharmaceutical Council (NPC), which sponsors and conducts research on health policy issues related to the development and use of innovative biopharmaceuticals to improve the health of patients. NPC’s research contributes to the body of evidence that supports discussions and decisions about patient access to treatments, appropriate use, and the value innovative treatments provide to both patients and the healthcare system.
Ms. Westrich provides strategic guidance to NPC’s policy research and communications activities. She leads several research initiatives across NPC’s portfolio, including employer-sponsored insurance. She has published extensively on issues related to value assessment frameworks, patient-centered formulary and benefit design, value-based contracts, quality performance measurement, and accountable care organizations. Additionally, Ms. Westrich leads NPC’s workplace culture initiative — most notably demonstrated by our company's recognition as a Certified Great Place To Work®.
Ms. Westrich began her NPC career in 2000. She has also served as Director of Research at the Pharmaceutical Research and Manufacturers of America (PhRMA), worked as a healthcare consultant at The Lewin Group and Xcenda, and as a health economics and outcomes researcher at Johnson & Johnson.
Ms. Westrich is a certified yoga teacher and life coach with a passion for helping others learn and thrive. She received her master’s degree in economics from Northwestern University and her undergraduate degree in economics and mathematics from the College of William and Mary.
C. Daniel Mullins is a Professor at the University of Maryland School of Pharmacy. He is Founder and Executive Director of the University of Maryland PATient-centered Involvement in Evaluating effectiveNess of TreatmentS (PATIENTS) Program. He received his BS in Economics from M.I.T. and his PhD in Economics from Duke University. His research and teaching focus on community-engaged research (CEnR), comparative effectiveness research (CER) and patient-centered outcomes research (PCOR). Dr. Mullins has received approximately $20 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. He is the Lead for Community & Stakeholder Engagement (CES) of the University of Maryland Institute for Clinical and Translational Research (ICTR) and co-Lead of CES for the Johns Hopkins’ CTSA.
Professor Mullins is one of two Editors-in-Chief for Value in Health and is author of nearly 350 peer-reviewed articles and book chapters. 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. He is a past recipient of the Dr. Daniel D. Savage Memorial Science Award, the Association of Black Cardiologists’ most prestigious annual award, and the ISPOR Marilyn Dix Smith Leadership Award.
Carissa Escober Doran, PhD, MPA, BSN is a research scientist in Health Economics and Outcomes Research (HEOR) at Vivo Health, Northwell Health’s pharmacy division, where she leads outcomes-based research. Having worked across nonprofit and industry settings for over a decade, Dr. Doran was a health economist at Avalere Health in life sciences consulting for the pharmaceutical industry prior to joining Northwell. She began her career at the Institute of Health Economics in Alberta, Canada, where she conducted projects that guided health policy and practice across the province and nationwide. Dr. Doran earned her PhD in Health Economics from the University of Alberta and an MPA in Health Policy and Management from NYU. She is a registered nurse in New York State, holding a BS in Nursing from NYU. Having led projects that integrate patient reported outcomes into research, she is committed to advancing HEOR methodologies to improve patient outcomes. She is excited to share her insights on patient centered outcomes as a speaker on this panel.