Sun May 5
12:00 PM - 1:00 PM
Registration Hours
1:00 PM - 1:10 PM
Welcome
Speaker:
Laura Pizzi, PharmD, MPH, ISPOR – The Professional Society for Health Economics and Outcomes Research, Lawrenceville, NJ, USA
1:10 PM - 2:10 PM
Session 1
The Power of Patient Voices: Elevating Patient-Centered Outcomes in Research
Level: Introductory
Patient-centered outcomes research (PCOR) has become a regular feature of HEOR discussions. However, our collective community must assess, “How far have we come?” What are the benefits of incorporating PCOR findings in healthcare decision-making and the development of innovations? What are the risks of failing to incorporate PCOR findings? What is the value to various stakeholders, including patients, clinicians, product innovators, and payers of incorporating PCOR considerations in their decisions? This session will examine the PCOR landscape, what constitutes authentic patient-centeredness, and what additional efforts are needed to capture and leverage what patients and their caregivers value.
Moderators
Michael Ward, MS
Alliance for Aging Research, Washington, DC, USA
Michael Ward, MS, leads the Alliance for Aging Research's advocacy efforts with Congress and federal agencies. Michael convenes multiple coalitions elevating the patient voice and advancing policies supporting affordability, access, equity, and funding for healthcare research. His work also focuses on elevating the need to incorporate the experience of older adults in outcomes research and value assessment.
Previously, Michael worked at Premier, Inc., the American Hospital Association, and Avalere. Michael received his B.A. from Vanderbilt University and M.S. from Carnegie Mellon University.
Speakers
Dawn Richards, BSc, PhD
Clinical Trials Ontario, Toronto, ON, Canada
Dawn Richards, PhD, is the founder of Five02 Labs Inc., and Director of Patient and Public Engagement at Clinical Trials Ontario. With a PhD (Analytical Chemistry) from the University of Alberta, and experience in a variety of roles over the past 20 years, it is her diagnosis with rheumatoid arthritis in 2006 that started her journey to combine her passion for science with making the most of her diagnosis. In her role at CTO, Dawn is charged with executing on CTO’s strategic pillar of patient and public engagement.
Dawn has contributed to the literature and practice in patient engagement around compensation of patient partners, authorship with patient partners, recognizing patients as people with various skills and who lead fulfilling lives, and education around patient engagement in research. As a volunteer, Dawn is Vice President of the Canadian Arthritis Patient Alliance and a member of The BMJ’s Patient Advisory Panel.
Eva Maria Ruiz de Castilla, MS, PhD
Latin America Patients Academy, Miami, FL, USA
With a background in industrial engineering and a Master's degree in Political Science from Sorbonne University in Paris, Eva Maria brings a unique interdisciplinary perspective to her work. Her DEA-PhD studies in Economic Development from the École des hautes études en sciences sociales (EHESS) in Paris further enhance her analytical capabilities and strategic insights.
Eva Maria's extensive experience, combined with her academic achievements and leadership skills, make her a recognized global leader in public health and patient advocacy. She is adept at driving meaningful change and fostering collaboration to address complex health challenges on a regional and international scale.
Jonathan Stokes, MBA
AbbVie, Madison, NJ, USA
Jonathan Stokes, MBA, is a Senior Director in Patient-Centered Outcomes Research overseeing neurology, ophthalmology, and specialty therapeutic areas at AbbVie. With nearly 20 years of experience conducting patient-centered research and generating patient experience data, Jonathan has a devoted interest in understanding and integrating the patient voice in drug development. He has extensive experience in designing, evaluating, and implementing clinical outcome assessments (COAs) to evaluate treatment benefit and has made significant contributions to major product approvals and launches, as well as the development of multiple novel patient-reported outcome (PRO) instruments for use in clinical trials and real-world practice. He also serves as a volunteer researcher and on the Board of Directors for the Barth Syndrome Foundation. Jonathan holds an MBA from Northeastern University.
2:10 PM - 3:10 PM
Session 2
Making a Difference: Identifying Best Practices to Measure the Impact of Patient Engagement
Level: Introductory
This session goes beyond the 'how-to' of engagement, focusing on the crucial aspect of measuring engagement attributes and accomplishments. Delve into the intricacies of determining when and how to measure the quality, quantity, impact, and overall value of patient engagement in research and/or care. Explore the complexities of assessing return on investment and discuss how establishing standards can enhance the credibility of the field. This session will emphasize methods and approaches for gathering evidence that genuinely reflects patient needs and experiences, making research more pertinent to both innovators and patients. While there is some consensus on what defines 'good' or 'bad' engagement, the need for assessment standards will be considered. The importance of measuring the impact of patient-centered evidence on shaping clinical practices and influencing healthcare policies will also be discussed.
Moderators
Pru Etcheverry, ONZM
Advocacy Answers New Zealand, Auckland, New Zealand
Pru has worked for over 20 years in patient advocacy, in New Zealand and internationally. She co-founded Advocacy Answers NZ in 2018 to strengthen not-for profit organisations focussing on initiatives that put patients at the heart of decision-making and using evidence-based advocacy to engage more effectively with Government.
She believes effective patient and citizen engagement is essential to improving patient outcomes by addressing the significant barriers for patient participation in healthcare systems.
Previously as Regional Director with the international Lymphoma Coalition she worked with blood cancer patient organisations to build capacity in Asia-Pacific. She led a health literacy initiative exploring best practice around the delivery of health information across the region.
Pru was also previously CEO of Leukaemia & Blood Cancer New Zealand and developed it into a prominent organisation in the sector. Prior to her NGO roles she had a corporate career in multinational healthcare companies.
Speakers
Hayley Chapman, MHS
Patient Focused Medicines Development (PFMD), Oakville, Canada
Hayley Chapman is a Senior Program Director with Patient Focused Medicines Development (PFMD). She has a Masters in Health Science from the University of Toronto and has worked in the healthcare sector for over 25 years focusing on the development and evaluation of partnerships between life science companies, patients, and patient organizations.
With PFMD, Hayley leads several key strategic initiatives including Patient Engagement Activities in the Post Launch Phase, Monitoring Patient Engagement to Learn Strategies, and Patient Engagement & Patient Experience Data Fusion. These projects include co-creation with global, multi-stakeholder working groups to ensure that what matters most and is important to patients, family members, and caregivers is incorporated into decision-making for product development and within the healthcare system.
Hayley not only has a professional interest in patient engagement but has also contributed to several provincial and national Advisory Boards sharing her caregiver perspective following her son's cancer diagnosis and treatment. She is currently a member of both the Oncology Family Advisory Council and the Patient and Family Advisory Council at Sick Children's Hospital in Toronto.
Mabel Crescioni, DrPH, JD
Patient-Centered Outcomes Research Institute (PCORI), Washington, DC, USA
Mabel Crescioni is a Senior Engagement Officer at the Patient Centered Outcomes Research Institute (PCORI) where she leads the translation of engagement knowledge practices into tools and resources to facilitate engagement. Prior to joining PCORI, Mabel had roles at Hemophilia Federation of America, Critical Path Institute (C-Path)and the University of Arizona College of Medicine. She also holds appointments as a Professor Practice at the Colleges of Law and Public Health at the University of Arizona.
Beyza Klein, MA
Novartis, Riehen, BS, Switzerland
Beyza serves as Global Patient Engagement Director at Novartis. She is experienced patient advocacy lead with a demonstrated history of working in the pharmaceuticals industry on many levels; country, region and global. Skilled in External Stakeholder Management, Product Lifecycle Strategy, Analytical Skills, Patient Engagement and Insights, Market Research and Patient Centric Drug Development, External Communication, Crisis Management. Leadership level strong patient advocacy professional with a MA focused in Sociology & Social Policy from University of Sydney.
3:10 PM - 3:30 PM
Coffee Break
3:30 PM - 4:30 PM
Session 3
Patient-Centered Methods: Accomplishments, Innovations, and the Future
Level: Introductory
The development of patient-centered research methods must address the fundamentals of who, what, when, and how as related to preferred outcomes. Studies must focus on study endpoints that are based on what is important to patients and caregivers in how a disease or treatment impacts health and daily life. Questions remain regarding the establishment of best methods practices in this blossoming field. This session aims to explore the current state of patient-centered research methods and highlight case examples and recent innovations to advance the science of patient engagement. The panel also will delve into the future state of patient-centered methods and discuss the strides necessary to fulfill the promise of PCOR.
Moderators
Axel Mühlbacher, PhD, MBA
Hochschule Neubrandenburg, Neubrandenburg, MV, Germany
Axel Mühlbacher, Dr. rer. oec., is professor of health economics and health care management at Hochschule Neubrandenburg and adjunct professor in the Duke Department of Population Health Sciences, Duke University (USA). He is a CHPIR Senior Research Fellow in the Center for Health Policy and Inequalities Research at the Duke Global Health Institute. His research focuses on methodological advances in decision analysis, operations research, econometrics and choice experiments and their application in the health domain. Recent work includes stated preferences research, empirical research to understand the behavioral aspects of health and problems of multi-criteria decision making to inform the optimal design of policies and regulatory decision making. Past positions include assistant professor at Technische Universität Berlin and research fellow, German Coordinating Agency of Public Health, Albert-Ludwig Universität Freiburg. Axel Mühlbacher holds a M.Sc. in business administration from Eberhard-Karls Universität (Tübingen) and a Ph.D in economics from the Technical University Berlin. From 2010-11 he was a Harkness Fellow in Health Care Policy and Practice. He served as a member of the scientific advisory board of the Institute for Quality Assurance and Transparency in Healthcare (IQTiG) and is chair of the board of the International Academy of Health Preference Research (IAHPR). He currently serves as co-editor of Value in Health, and on the editorial advisory board of PharmacoEconomics, and The Patient – Patient Centered Outcomes Research. Axel Mühlbacher is author of several books and more than 100 peer-reviewed articles. Global Health Institute, Duke University (USA). He serves as a member of the scientific advisory board of the Institute for Quality Assurance and Transparency in Healthcare (IQTiG) and a board member and chair of the International Academy of Health Preference Research (IAHPR). He currently serves as associate editor of Value in Health and on the editorial advisory board of the Journal of Choice Modelling (JOCM), PharmacoEconomics, Int. Journal of Integrated Care (IJIC) and The Patient – Patient Centered Outcomes Research. Axel Mühlbacher is author of several books and more than 100 peer-reviewed articles.
Speakers
Robyn Bent, MS, RN
CDER, FDA, Silver Spring, MD, USA
Robyn Bent is the director of the Patient-Focused Drug Development (PFDD) Program in the Center for Drug Evaluation and Research (CDER). PFDD is an effort to systematically obtain patient input and facilitate the incorporation of meaningful patient input into drug development and regulatory decision making.
Prior to joining FDA, Robyn held several positions at the National Institutes of Health. Robyn has a background in pediatric oncology nursing and extensive experience in clinical trial design, conduct, and oversight. Robyn earned her Bachelor of Science in Nursing from The Catholic University of America and her Master of Science degree from the George Washington University.
Celina Gorre, MPH, MPA
WomenHeart, Washington, DC, USA
Celina Gorre is the CEO of WomenHeart, which supports, educates and advocates for women living with and at risk for heart disease. Prior to WomenHeart, Celina served as Executive Director of the Global Alliance for Chronic Diseases, in London, distributing over $250M of research funding worldwide. In 2009-2011, Celina was Managing Director of the Foundation for the UN Global Compact. From 2007-2009, she worked with UNFPA and UNICEF in Angola as a senior HIV/AIDS advisor. Celina has been the Technical Manager for the Global Business Coalition on HIV/AIDS, from 2005-2007, and in-house corporate responsibility for Gap and Mattel. Celina holds an MPH (UCLA) and MPA (Harvard).
Elisabeth Oehrlein, PhD, MS
Applied Patient Experience, LLC, Washington, DC, USA
4:30 PM - 5:30 PM
Session 4
Advancing Patient-Centered Research: Seizing Opportunities and Addressing Challenges
Level: Introductory
This session aims to elevate patient-centered research by integrating insights from all three previous sessions to identify future priorities and actionable steps. Future priorities will consider specific needs with respect to specific methods, as well as generally related to increasing the scientific rigor and credibility of patient-centered research. Action steps to further best practices for patient engagement and measurement of its impact will be explored.
Moderators
Eleanor Perfetto, PhD, RPh, MS
University of Maryland, VENICE, FL, USA
Eleanor M. Perfetto has worked in government, industry, consulting, and academia. Most recently, Eleanor was with the leading, U.S. nonprofit organization focused on patient issues as Executive Vice President for Strategic Initiatives at the National Health Council (NHC). Currently, she holds a faculty appointment at the University of Maryland School of Pharmacy where she is Professor of Pharmaceutical Health Service Research. Her research and policy work primarily focus on patient and family engagement, including comparative effectiveness and patient centered-outcomes research; patient-focused drug and medical-product development; clinical outcome assessment, selection, and development; and patient-centered value assessment and healthcare quality measurement.
As caregiver for her late spouse who suffered from early dementia due to chronic traumatic encephalopathy, Eleanor is a recognized advocate for patients with head-trauma-related dementia and their families. In May 2007, she received the Alzheimer’s Association New York City Chapter Advocacy Leadership Award. In 2010, she received the Alzheimer’s Association National Capital Area Chapter Award for Advocacy & Awareness. In 2012, she received the Legacy Award from the Concussion Legacy Foundation, for which she is a past board president and a two-term inaugural board member. Today, she serves on the board for the Brain Injury Association of America, where she chairs the Governance Committee and serves as Board Secretary. She also is a current board member for the Dan Lewis Foundation, which is dedicated to brain regeneration research.
Prior to joining the NHC and University faculty, Dr. Perfetto was with Pfizer Inc for almost eight years, most recently as Senior Director, Federal Government Relations; past positions were in Evidence-Based Strategies and Payment Policy Analysis. Early in her career, she served in the U.S. Public Health Service serving for 6 years as a pharmacist in the Indian Health Service in Pine Ridge, SD and Talihina, OK, and as senior pharmacoepidemiologist at the Agency for Health Care Policy & Research (now Agency for Healthcare Research & Quality). Her highest rank was Commander (05).
Dr. Perfetto has a distinguished record of service to professional and other organizations. Currently, she is Chair of the Patient-Centered Special Interest Group at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and served as co-chair for the 2016 ISPOR Annual Meeting. In the past, she has served as a CMS MedCAC member; co-chair of the National Quality Forum’s Alzheimer’s Disease and Related Dementias Project and on the Patient-Reported Outcomes Expert Panel; a past Pharmacy Quality Alliance and Drug Information Association board chair; and past member of the Center for Medical Technology Policy Board and Health Industry Council Board of Advisors. She was an Assistant Editor for the Journal of Managed Care and Specialty Pharmacy and has been a peer reviewer for numerous journals, the Patient-Centered Outcomes Research Institute, government granting agencies, and pharmacy professional organizations. She has contributed book chapters and published in peer-reviewed journals. She is a frequent speaker at numerous national and international scientific conferences.
Dr. Perfetto holds BS and MS degrees in pharmacy from the University of Rhode Island and in 2009 received the Distinguished Alumni award from the College of Pharmacy. She also holds a PhD in Public Health, concentrating in health policy and epidemiology, from the University of North Carolina at Chapel Hill.
Speakers
Alan Balch, PhD
Patient Advocate Foundation, Hampton, VA, USA
Dr. Balch has more than 20 years of executive leadership in the non-profit sector spanning multiple advocacy areas including access and affordability, health equity, prevention and early detection, and cancer research, He became the CEO of both PAF and NPAF in 2013 and has served as a member of both Boards of Directors since 2007. From 2006-2013, he served as Vice President of the Preventive Health Partnership -- a national health promotion collaboration between the American Cancer Society, American Diabetes Association, and American Heart Association. Prior to his work with the Preventive Health Partnership, Dr. Balch was the Executive Director of Friends of Cancer Research from 2003 to 2006.
Dr. Balch currently serves or recently served on dozens of selective boards, steering committees, and councils for an array of institutions to include the National Academies of Medicine, the National Quality Forum (NQF), National Committee for Quality Assurance (NCQA), the Institute for Clinical and Economic Review (ICER), the Clinical Pathways Congress, the Council for Affordable Health Coverage (CAHC), the Innovation and Value Initiative (IVI), Core Quality Measure Collaborative (CQMC), the Foundation for the Accreditation of Cellular Therapy (FACT), the Hutchinson Institute for Cancer Outcomes Research (HICOR), the Duke-Margolis Value-Based Payment Consortium, the Specialty Pharmacy Certification Board (SPCB), and the Pharmacy Quality Alliance (PQA). Most recently, Dr. Balch was selected as a Co-Chair of the North American Patient Representatives Roundtable for the Professional Society for Health Economics and Outcomes Research (ISPOR).
Dr. Balch also serves on the editorial board and as a contributing editor for the Journal of Clinical Pathways and on the advisory board for the Journal of Oncology Navigation and Survivorship. He is frequently invited to peer review article submissions to various publications including the Journal of Health Care for the Poor and Underserved, Journal of Clinical Oncology, American Journal of Preventive Medicine, and the American Journal of Public Health.
He earned his PhD in 2003 from the University of California Santa Cruz, his master’s degree in 1997 from the University of Texas San Antonio; and his bachelor’s degree in 1994 from Trinity University in San Antonio.
Kenneth Mendez, MBA
Asthma and Allergy Foundation of America, Arlington, VA, USA
5:30 PM - 6:30 PM
Networking Reception
Following the conclusion of the ISPOR Patient-Centered Research Summit 2024, we invite you to join us for the Networking Reception featuring remarks from CVS Healthspire™ Life Sciences Solutions on their patient initiatives.
