Patient-Centered Partnerships Summit Speakers
Speaker
Charles Abrams, MD
Past President, American Society of Hematology Research Collaborative
Charles S. Abrams, MD is a previous President of ASH. Currently he is the Francis Wood Professor of Medicine, Pathology & Laboratory Medicine, and the Chief Scientific Officer of the Department of Medicine at the University of Pennsylvania. He has been elected to membership in the National Academy of Medicine (NAM), the American Society for Clinical Investigation (ASCI), and the Association of American Physicians (AAP). Dr. Abrams leads the Sickle Cell Network for the ASH Research Collaborative. The Network is made up of an esteemed and established group of clinicians and researchers along with the Sickle Cell Disease community whose input is integral to the Network’s mission. With this novel and rich set of resources, the Network designs and conducts clinical studies as well as collects, aggregates, and analyzes real world data focused on advancing the care and improving the lives of people with Sickle Cell Disease.
Speaker
Gina Assaf
Lead & Co-Founder, Patient-led Research Collaborative
Gina Assaf is a Long COVID patient advocate who has made significant contributions to the field of patient-led research for Long COVID. She is the co-founder and co-lead of the Patient-Led Research Collaborative (PLRC), a global collaborative whose mission is to facilitate patient-led research into Long COVID while following rigorous research methodology. She is also a digital design researcher, consultant, and strategist for the government and global development sector.
Speaker
Kira Baldonado
VP Public Health and Policy, Prevent Blindness
Kira is the Vice President of Public Health and Policy for Prevent Blindness- responsible for the mission-based work of the organization, focusing on program outreach, education, and policy directives. Kira, and her team of 7 staff members are working to improve our nation’s vision and eye health system by leading consensus-driven initiatives, creating accountability and improved surveillance for vision, while promoting equity and patient-engagement in each step of the continuum of vision care. She has overseen the successful launch of the ASPECT Patient Engagement Program- an advocate training program for patients and allies; the Center for Vision and Population Health at Prevent Blindness; and led the National Center for Children's Vision and Eye Health (NCCVEH) at Prevent Blindness until 2018. Kira was named as One of the Most Influential Women in Optical for 2023 by VisionMonday and is an International Fellow with the Society of Leadership Fellows at St George’s House, Windsor Castle.
Speaker
Jennifer Bright
President & CEO, International Consortium for Health Outcomes Measurement (ICHOM)
Jennifer Bright, MPA (she/her) is President & CEO, International Consortium for Health Outcomes Measurement (ICHOM), a nonprofit that works with patients and clinical experts worldwide to define and deploy standardized tools to measure health outcomes that matter to patients. Prior, she held executive roles at the Innovation and Value Initiative (IVI), focusing on advancing patient-centricity, transparency and equity in health technology assessment, at the Society for Healthcare Epidemiology of America, and Mental Health America.
Jennifer is also Founder and President, Momentum Health Strategies®; Board Chair, Mental Health America; and editor, American Journal of Accountable Care and the Journal of Patient Experience. She holds degrees in political science and public administration from Trinity University and George Washington University.
Speaker
Harold Feldman, M.D., MSCE, M.S.Ed.
Deputy Executive Director for Patient-Centered Research Programs, PCORI
Harold (Harv) I. Feldman, M.D., MSCE, M.S.Ed., is deputy executive director for Patient-Centered Research Programs at the Patient-Centered Outcomes Research Institute (PCORI).
In this role, Feldman oversees an array of activities at PCORI, including funding research studies and research-related projects, engaging the healthcare community in PCORI’s work, and advancing dissemination and implementation of research findings.
Speaker
Lisa Fitzpatrick, MD, MPH, MPA
Chief Executive Office, Grapevine Health
Dr. Fitzpatrick is the Founder and CEO of Grapevine Health. Her career has spanned research, clinical medicine, global health, community health education and patient advocacy. Dr. Fitzpatrick worked at the Centers for Disease Control and Prevention and recently served as the medical director for Washington DC’s Medicaid program. She is a clinical professor and professorial lecturer for the George Washington University School of Medicine and Milken Institute School of Public Health. A member of the Aspen Institute Global Leadership Network, she was selected as a 2017 Aspen Institute Health Innovator Fellow.
Speaker
Susannah Fox
Arthur, Rebel Health
Susannah Fox is a health and technology strategist whose life’s work has been to explore and map the terrain created by patients, survivors, and caregivers. She passionately believes that open access to information, data, and tools can help patients make better decisions and catalyze health care innovation. Her recent book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care (MIT Press, 2024), showcases how consumers are building up our collective capacity for better health and how the health care ecosystem can leverage the power of connection with those they serve.
Fox is a former Chief Technology Officer for the U.S. Department of Health and Human Services during the Obama Administration, where she led an open data and innovation lab and launched Invent Health, an initiative focused on user-driven innovation for medical and assistive devices. As an entrepreneur-in-residence at the Robert Wood Johnson Foundation she built project teams to bring patient and caregiver insights into work of the nation’s largest philanthropy dedicated solely to health. For 14 years she directed the health portfolio at the Pew Research Center’s Internet Project where she researched the intersection of health, social media, and patient engagement and first coined the phrase peer-to-peer health care.
Fox serves on the boards of Cambia Health Solutions and Smart Health Network.
Speaker
Venus Ginés, MA, P/CHWI
Founder, Día de la Mujer Latina, Inc.
Ms. Venus Ginés is a 32-year breast cancer survivor, who suffered a recurrence in 2017 after 25 years of survivorship and again in the Fall of 2022, with Triple Negative Invasive Lobular Carcinoma. In 2018, Venus retired as a faculty member at Baylor College of Medicine in Houston, teaching cultural competence and health literacy, as well as conducting research on Latino medical mistrust to devote her time to her Latino/a advocacy work.
From her personal experience with cancer and her sister’s untimely death of cervical cancer, Venus founded Día de la Mujer Latina, Inc., (DML), in 1997 as a national non-profit organization, celebrating its signature health fiesta in 42 states, Puerto Rico, Mexico, and the Dominican Republic, providing the medically underserved Latina community with culturally and linguistically proficient health education, early detection screening for chronic diseases, culturally-tailored preventive programs for Latino teens and patient-centered navigation.
In 2009, Venus became a Texas State Certified Instructor of Promotores/Community Health Workers (P/CHWs) with DML being the first approved bilingual Statewide Sponsored Certification Training Program for P/CHWs and Instructors in Texas.
On February 12, 2020, DML developed the 1st bilingual training for P/CHWs on Dispelling Myths about COVID-19 with subsequent training on Telehealth Community Navigation, Behavioral Health Community Navigation, Vaccination Community Navigators, and Clinical Trial Community Navigation for potential career opportunities. DML sponsored 14 P/CHWs Instructors to become bilingual Mental Health First Aid Instructors, in anticipation of the need for more crisis interventions on a community level.
Her recent launch of the Telehealth Community Navigation Contact Center, staffed by Bilingual Promotores/CHWs, continues to successfully answer hundredths of calls, debunking misinformation and promoting health equity by incorporating the bilingual Telehealth Nurse Navigator, who is also a P/CHW-Instructor, to provide warm transfer calls to our clinical partners. On June 30, 2022, DML was approved for the Community Health Worker Apprenticeship Program under the Dept of Labor and began its program on September 8, 2022, to expand the role of P/CHWs/Paraprofessionals in public health and mental health peer services.
Speaker
Clifford Hudis, MD, FACP, FASCO
CEO, American Society of Clinical Oncology
Dr. Hudis is the Chief Executive Officer of the American Society of Clinical Oncology (ASCO). He also serves as the Executive Vice-Chair of its Conquer Cancer Foundation. Dr. Hudis previously served in a variety of volunteer and leadership roles at ASCO, including as its President during the Society’s 50th anniversary year (2013-14). Before coming to ASCO full-time, he was the Chief of the Breast Medicine Service at Memorial Sloan Kettering Cancer Center (MSKCC) in New York City and Professor of Medicine at the Weill Medical College of Cornell University. As CEO of ASCO, Dr. Hudis is responsible for delivering on the board’s strategic goals through education, research, and support for the delivery of the highest quality of care by the Society’s more than 50,000 members in more than 170 countries.
Speaker
Arnie Joseph
CEO, Chroma Health Solutions
Arnie Joseph is a distinguished healthcare executive with over 31 years of experience leading groundbreaking initiatives in medical education, public health campaigns, and client services. As the founder and CEO of Chroma Health Solutions, Mr. Joseph has directed multidisciplinary teams—including physicians, medical editors, and community health liaisons—to implement large-scale programs that engage diverse, underserved populations. His expertise in patient activation within “high-risk” communities has garnered widespread recognition from healthcare organizations and academic institutions.
Speaker
Kathy McDonald, MD
Professor of Health Systems, Quality and Safety, Johns Hopkins University
Dr. Kathryn (Kathy) McDonald is the Bloomberg Distinguished Professor of Health Systems, Quality and Safety at Johns Hopkins University. She holds primary appointments in the School of Nursing and the School of Medicine (General Internal Medicine), as well as academic affiliations in business, public health and engineering.
She leads the Knowledge to Action Initiative at Hopkins, serves as Co-Director of the Center for Diagnostic Excellence at the Armstrong Institute for Patient Safety and Quality, and senior advisor to the Center for Equity in Aging. She has served as president of the Society for Medical Decision Making, and as a member of the National Academy of Medicine and National Quality Forum committees charting new territory in diagnostic quality and safety.
Speaker
Justine Nicholas
Senior Manager, Sickle Cell Disease Programs Community Engagement, American Society of Hematology Research Collaborative
Justine holds an MS in toxicology from the University of Florida, where her graduate work on public health risks related to airborne infections led her into clinical research. She has over seven years of experience bringing the patient perspectives to the way research is designed and executed. Her area of interest is working with historically underserved populations in the rare disease community. She has led patient-centered research initiatives in lupus, juvenile arthritis, and pediatric asthma. As Senior Manager of Sickle Cell Disease (SCD) Community Engagement with the ASH Research Collaborative (RC), Justine works closely with a network SCD Community Advisory Boards at ASH RC Research Sites to co-create solutions that promote clinical research education, build trust among SCD researchers and the SCD Community, and ensure that research initiatives genuinely reflect the needs and concerns of the SCD community.
Speaker
Christian Rubio
Director for Digital Health Strategy, Everything ALS
Christian Rubio is Executive Director at EverythingALS, a digital biomarkers and endpoints research non-profit serving the ALS/ MND community. An experienced advocacy leader who has worked on the non-profit and biopharma sides of the drug research and development collaboration space, Christian leverages this experience to lead the organization’s pre-competitive digital health technology’s consortium.
Speaker
Michelle Tregear, PhD
Director of Education and Training Programs, National Breast Cancer Coalition
Michelle Tregear, Ph.D., a 16-year breast cancer survivor, serves as the Chief Programs Officer for the National Breast Cancer Coalition (NBCC). Joining NBCC in July 2018, she brings more than 24 years of experience in education and training development, program evaluation, research/analysis, and complex project management. Michelle also serves as a patient advocate representative of the Breast Cancer Scientific Advisory Committee for Translation Research in Oncology (TRIO), and is a founding member of the Common Sense Oncology initiative (https://commonsenseoncology.org/). Prior to joining NBCC, she served as a Project Director and Senior Researcher at AFYA, Inc., based in Laurel, MD, and ECRI Institute, based in Plymouth Meeting, PA. In this capacity, she directed dozens of Federal contracts largely with the US Department of Health and Human Services. Michelle holds both a Master of Arts degree and a Doctorate of Philosophy in Psychology from the University of Colorado, Boulder. She has held postdoctoral fellowships at the University of Colorado, Boulder, Harvard Medical School, and the University of Pennsylvania.
Speaker
Kevin Wake
President, Uriel E. Owens Sickle Cell Disease Association of the Midwest
Kevin grew up on his family’s dairy farm in Leavenworth, Kansas. He and his two brothers were all diagnosed with sickle cell disease. He has a bachelor’s degree in Human Biology 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.
After his career departure, he received his MS in Healthcare Informatics from Walden University and a Community Health Worker certification from the Sickle Cell Disease Association of America (SCDAA). Kevin currently volunteers as President of the Uriel E. Owens Sickle Cell Disease Association of the Midwest, a CBO in Kansas City, KS. He is Chairman of University Health’s Patient Family Advisory Council, Board member of the International Consortium for Health Outcomes Measurement (ICHOM), and is involved with advocacy through the Rare Disease Legislative Advocates. He has also worked on various projects and committees for such organizations as American Society of Hematology, National Health Council, Society to Improve Diagnosis in Medicine, and Missouri Hospital Association.
Speaker
Suzanne Watnick, MD
Health Policy Scholar, American Society of Nephrology
Suzanne Watnick, MD is a Professor of Medicine at the University of Washington in Seattle. She is a practicing nephrologist who cares for Veterans at the Seattle Veterans Administration (VA) clinic, specializing in care for those with chronic kidney disease, including end-stage kidney disease. This year, she is serving as the Health Policy Scholar in Residence at the American Society of Nephrology.
Speaker
John Whyte, MD
Chief Medical Officer, WebMD
Dr. John Whyte is a physician and author with a unique combination of government and private sector work that provides him with an exceptional perspective on health care services, wellness, clinical trials, information technology, artificial intelligence and medical consumerism.
He is currently the Chief Medical Officer, WebMD. In this role, Dr. Whyte leads efforts to develop and expand strategic partnerships that create meaningful change around important and timely health issues. He is an expert on the changing nature of search through his work in iterating digital platforms from simply providing content, to instead playing a pivotal role in connecting to care. He has been a leading voice when it comes to health topics, consistently being named as one of the top 20 influencers.
