Patient-Centered Economic Impacts Project

Mary E. Reed, DrPH, is a senior research scientist at the Kaiser Permanente Northern California Division of Research, and a founding steering committee member of the CREST emergency medicine research network. Her research interests include health information technology and health care delivery organization and their effects on clinical care, quality, and costs. She examines patient care-seeking and health care experience, particularly in using patient-facing technology and in navigating health insurance benefits. Her research has been funded by the National institute of Diabetes, Digestive and Kidney Disease (NIDDK), the Patient Centered Outcomes Research Institute (PCORI), and the Agency for Healthcare Research and Quality (AHRQ). Her work has been recognized in Best Abstracts of the AcademyHealth Annual Research Meeting and as an AcademyHealth Notable Article-of-the Year. Dr. Reed is the chair of the AcademyHealth Data and Methods Council.

She received her DrPH at the School of Public Health at the University of California, Berkeley, and completed a post-doctoral fellowship at the Institute of Health Policy Studies at the University of California, San Francisco.

Kevin grew up on his family’s dairy farm in Leavenworth, Kansas.  He and his two brothers all were diagnosed with sickle cell disease.  Kevin graduated from the University of Kansas and worked in pharmaceutical sales and management for 23 years before taking an early retirement due to health complications from his sickle cell.  Since retirement, he earned his master’s degree from Walden University and a Community Health Worker certification from SCDAA.  Kevin is now a patient advocate and is currently the President of the Uriel E. Owens Sickle Cell Disease Association of the Midwest in Kansas City, KS.  He is involved with advocacy through the Rare Disease Legislative Advocates, is Chairman of University Health’s Patient Family Advisory Council and has worked on state and national committees.

Silke Schoch is the Director of Research & Programs at the National Health Council. Ms. Schoch joined the National Health Council in 2017 and has been a project manager for many of the NHC’s patient engagement focused projects including the Patient Experience Mapping Toolbox and Patient-Centered Core Impact Sets Blueprint. Her interests include patient engagement, qualitative research, and gender equity. Ms. Schoch earned a Bachelor of Arts degree in International Studies from American University in 2017 and a Master of Arts degree from Johns Hopkins University in Public Management in 2023.

Elisabeth M. Oehrlein, PhD, MS, research is focused on qualitative and quantitative methods to collect and apply data about patient and caregiver experiences, priorities, and unmet needs to guide decisions across drug development. Before founding AppliedPX, she served on the National Health Council (NHC) senior leadership team. At the NHC, Dr. Oehrlein led numerous initiatives, including developing the Patient Experience Mapping Toolbox. She has spoken widely on the topic of patient-centered research, including invited presentations at the National Academy of Sciences and briefings to the Rare Disease Congressional Caucus. She is a contributing author and editor of the CIOMS report, Patient involvement in the development, regulation and safe use of medicines. Dr. Oehrlein is an active member of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), where she has held leadership roles in the Patient-Centered and Real-World Evidence Special Interest Groups and is faculty for the short course “An Introduction to Patient-Focused Medical Product Development.” She has published widely in medical, economic, and health policy journals and is an Associate Editor of Value in Health. 

Dr. Oehrlein holds a BA from Franklin & Marshall College, an MS in Epidemiology from the University of Maryland School of Medicine’s Department of Epidemiology and Human Genetics, and a Ph.D. in Pharmaceutical Health Services Research from the University of Maryland School of Pharmacy.

Dr. González is an Associate Professor in the Department of Population Health Sciences at Duke University. He is an expert in the design of stated-preference survey instruments and the use of advanced statistical tools to analyze stated-preference data. His research has focused on the transparency in benefit-risk evaluations of medical interventions, and the elicitation of health preferences from multiple stakeholders to support shared decision making. Dr. González co-led the first FDA-sponsored preference study which was highlighted in FDA’s recent precedent-setting guidance for submitting patient-preference evidence to inform regulatory benefit-risk evaluations of new medical devices. More recently, Dr. Gonzaález collaborated with the Medical Devices Innovation Consortium (MDIC) to prepare the first catalog of preference-elicitation methods (part of the Patient-Centered Benefit-Risk Assessment Framework) suitable for benefit-risk assessments of medical devices. As a core group member of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Conjoint Analysis Task Force, Dr. González helped draft good-practice recommendations for statistical analysis, interpretation, and reporting of health preference data.

Phyllis Foxworth serves as the Manager of Advocacy for the Huntington’s Disease Society of America (HDSA) and directs the organization’s national advocacy strategy to improve the lives of everyone affected by Huntington’s disease (HD) and their families. Ms. Foxworth mobilizes the community of volunteer advocates to raise the profile of HD with federal regulators and congressional members to speed the innovation of new therapeutic interventions, increase access to care, and reduce the financial burden on HD families.

Before joining HDSA, Ms. Foxworth directed advocacy for the Depression and Bipolar Support Alliance. She is a co-author of nine research papers focused on the financial impact of care, preferred treatment outcomes for people living with major depressive disorder, and shared decision-making and was a co-principal investigator on three PCORI projects. She has served as a patient representative panelist at several FDA public meetings and directed the first externally-led patient-focused drug development meeting that focused on mental health.  Ms. Foxworth served as a patient representative for the Institute for Clinical and Economic Review during the assessment of Esketamine and served on a committee funded by the Centers for Medicare and Medicaid Services to propose an instrument for mental health value-based reimbursement.

Elizabeth L. Cope, PhD, MPH, is Vice President of Health Systems Improvement at AcademyHealth where she oversees a portfolio focused on the advancement of just, resilient, humanity-affirming systems of care. With expertise in epidemiology and implementation, Dr. Cope leads evidence translation collaboratives, performance management projects, and multi-stakeholder coalition-building initiatives.

For nearly 15 years, Dr. Cope has been leading work in safety net and pediatric settings focused on building research capacity among patients and providers, developing and evaluating system improvement strategies, and designing payment and performance policy. She currently directs efforts for several HRSA- and AHRQ-funded initiatives as well as projects funded by private foundations. Her portfolio spans diverse content areas such as HIV viral suppression, medical complexity, primary care practice transformation, informed/shared decision-making, trust in health care, and quality measurement.

Dr. Cope earned her undergraduate degree at Rice University and her MPH and PhD from University of Michigan. She is active in numerous associations and consortia, such as the Interdisciplinary Association for Population Health Research (IAPHS), ISOQOL, North American Primary Care Practice Research Group (NAPCRG), and PROTEUS.

Vakaramoko (Karam) is currently the Health Economics Lead (Director) int he Global Value and Real-World Evidence (GVRWE) group at Otsuka. He oversees the design and implementation of economic modeling activities for all Otsuka products. Karam graduated with a PhD in Pharmaceutical Sciences (Population Health) at the University of Montreal (Quebec, Canada) and completed a coveted post-doctoral fellowship in health economics and decision sciences at the Programs for Assessment of Technology in Health – McMaster University (Hamilton, Ontario, Canada). He served one term on the Innovation and Value Initiative (IVI) Health Equity Initiative Steering Committee from 2021 - 2023 and currently represents Otuska in the advisory board for the Center for the Evaluation of Value and Risk in Health (CEVR). Prior to joining Otsuka, he spent a decade in academia (FAMU & UF) where he served as an Assistant Professor of Health Economics and Outcomes Research and Director of an Applied Pharmacoeconomics Online Masters program at the University of Florida, Gainesville, Florida.

Gwen Darien is a longtime patient advocate who has played leadership roles in some of the country’s preeminent nonprofit organizations. As executive vice president for patient advocacy and engagement, Gwen leads programs that link Patient Advocate Foundation’s direct patient service programs to NPAF system change initiatives, with the goal of improving access to affordable, equitable quality health care.

Called “a bit of a renegade” by People magazine, Gwen has long insisted on pushing boundaries while maintaining a safe space for patients. As editor and publisher of Mamm, a magazine for women with breast or reproductive cancer, Gwen published features on previously taboo subjects, such as dating after a mastectomy, along with the more expected academic features on news and policy analysis. Her media leadership was recognized by the Avon Foundation, which honored her as one of “the most powerful women in breast cancer.”

As a three-time cancer survivor herself, Gwen came into cancer advocacy expressly to change the experiences and outcomes for the patients who came after her and to change the public dialogue about cancer and other life-threatening illnesses. With these goals in mind, in 2005 she started the first stand-alone advocacy entity in a professional cancer research organization at the American Association for Cancer Research, causing outside observers to note the organization’s “progressive commitment to patient advocacy.” At AACR, she launched CR magazine – a magazine for people with cancer and those who care for them. Later, she served as the executive director of the Samuel Waxman Cancer Research Foundation; director of The Pathways Project; and executive vice president of programs and services at the Cancer Support Community. In each role, Gwen championed placing patients at the center of health system change, whether it is for research, public policy or direct services.

Gwen serves on a wide range of program committees and workshop faculties. She is the past Chair of PCORI’s Patient Engagement Advisory Panel and founding Chair of Community Engagement in Genomics Working Group of the National Human Genome Research. Gwen serves on the Board of Trustees of the USP and is a member of the National Cancer Policy Forum. Gwen also writes about her experiences as an advocate and cancer survivor. A recent piece, Transformation: My Experience as a Patient and an Advocate in Three Chapters appeared in the National Academy of Medicine Perspectives.

Gwen is a graduate of Sarah Lawrence College, where she also served as an advisor for their Health Advocacy program. She grew up in Milwaukee, but now lives in New York City, where she cooks Persian dishes, collects earrings and improves her friends’ personal libraries, one book at a time.