Keynote Speakers
Namandjé Bumpus, PhD, Principal Deputy Commissioner, U.S. Food and Drug Administration (FDA)
Dr. Namandjé N. Bumpus serves as the FDA’s Principal Deputy Commissioner. Among the many facets of her role, her responsibilities include working with FDA leadership to develop, advance, and implement key public health initiatives. Chief among her current priorities is the proposed reorganization unifying the Human Foods Program, creating a new model for the Office of Regulatory Affairs, and strengthening the agency.
As the FDA’s Chief Scientist since August 2022, Dr. Bumpus has elevated the research foundation, science, and innovation that provides vital support for the FDA’s public health mission, including leading the agency’s implementation of the Modernization of Cosmetics Regulation Act. She continues to raise the cache of the FDA’s regulatory science within the agency and beyond by being a champion of plain language, a staunch advocate for truth-telling in public health, and a formidable scientist.
Before joining the FDA, Dr. Bumpus was the E.K. Marshall and Thomas H. Maren Professor and Chair of the Department of Pharmacology and Molecular Sciences at Johns Hopkins School of Medicine. Her research focused on drug metabolism, pharmacogenetics, bioanalytical chemistry, and infectious disease pharmacology. She also served as Chair of the National Institutes of Health Xenobiotic and Nutrient Disposition and Action study section and currently serves as president of the American Society for Pharmacology and Experimental Therapeutics.
Dr. Bumpus earned a bachelor’s degree in biology at Occidental College, a doctorate in pharmacology at the University of Michigan, and completed a postdoctoral fellowship in molecular and experimental medicine at the Scripps Research Institute. Her honors include the Leon I. Goldberg Award from the American Society for Clinical Pharmacology and Therapeutics; the James Gillette Award from the International Society for the Study of Xenobiotics; the John J. Abel Award in Pharmacology from the American Society for Pharmacology and Experimental Therapeutics; and the Presidential Early Career Award for Scientists and Engineers. She is an elected fellow of the American Association for the Advancement of Science and is a member of the National Academy of Medicine.
Kapil Parakh, MD, MPH, PhD, Author & Senior Medical Lead, Google
Kapil Parakh, MD, MPH, PHD is a practicing cardiologist who serves as a Senior Medical Lead at Google. Over the last nine years, Dr. Parakh has launched products that reach over a billion people and pioneered partnerships with a range of organizations, including the World Health Organization and the American Heart Association. Dr. Parakh also currently sees patients part time at the VA Medical Center, serves as an adjunct associate professor at Georgetown, and serves as an adjunct assistant professor at Yale University.
Prior to joining Google, Dr. Parakh served as a White House Fellow and was the principal health advisor to the Secretary of Veterans Affairs. He was also the co-founder of Health for America, an award-winning nonprofit on health innovation. He was previously Director of Heart Failure at Johns Hopkins Bayview, where he developed novel care delivery models. As a clinician-scientist he has published a number of papers on psychosocial factors in heart disease.
Dr. Parakh is board certified in Internal Medicine, Cardiology, and Advanced Heart Failure and holds a medical degree, a master’s in public health, and a PhD. His book, Searching for Health, was published by Johns Hopkins Press.
Anita Ravi, MD, MPH, MSHP, FAAFP, CEO, Co-Founder, PurpLE Health Foundation
Dr. Anita Ravi, MD, MPH, MSHP, FAAFP, is a board-certified family medicine physician and a nationally recognized expert in the health of gender-based violence (GBV) survivors. She is CEO and co-founder of PurpLE Health Foundation, a groundbreaking nonprofit organization that is advancing health equity for GBV survivors, including women and girls who have experienced human trafficking, domestic violence, and sexual assault.
Dr. Ravi’s impact on the field of health care and GBV extends beyond clinical practice, shaping public health policies and initiatives through her extensive research, publications, and national committee service, including serving as a consultant for the U.S. Department of Justice’s National Human Trafficking Training and Technical Assistance Center. A highly sought after speaker and educator, Dr. Ravi is known for using creative tools such as drawing and games to emphasize the urgent need for a radical health care system transformation to meet the needs of GBV survivors and other chronically invisibilized populations.
Her exceptional contributions to the field have earned her national recognition, including honors such as being selected as a 2021 “40 Under 40” Leader in Minority Health by the National Minority Quality Forum and as the recipient of the 2024 “Courage in Women’s Health Advocacy” Award by the American Medical Association Foundation. Her work has been integrated into reports by the National Academy of Medicine and Department of Justice and featured in prominent media outlets including Politico and the Wall Street Journal.
Dr. Ravi is a graduate of the University of Michigan School of Medicine. She also earned master’s degrees in health policy research from the University of Pennsylvania School of Medicine and in public health from Yale University.
Speakers
Tina Aswani-Omprakash, MPH, Patient Advocate, South Asian IBD Alliance & Senior Director of Strategic Partnerships, Sommer Consulting
Tina Aswani-Omprakash, MPH, is a multi award-winning women’s health advocate based out of New York City. She is Senior Director of Strategic Partnerships at dynamic women- and minority-led market research consultancy, Sommer Consulting, and its vast patient insights network, The Insighters. At Sommer, she spearheads marketing efforts via partnerships and engagement in patient and health care professional communities.
Aswani-Omprakash pivoted from Wall Street to a path of impactful change in health care after her own Crohn’s disease diagnosis and life-saving ostomy surgery. Due to the stigmas and disparities she faced in her journey, she started a blog and social media advocacy platform called Own Your Crohn’s, which went viral across patient communities and eventually led to her co-founding South Asian IBD Alliance (SAIA), a patient-clinician led nonprofit organization working to improve education and awareness in the growing South Asian IBD community.
She has spoken at multiple leading medical, clinical research, and patient conferences. She looks forward to attending the National Health Council’s (NHC) Science of Patient Engagement Symposium and moderating the panel discussion, Disrupting the Paradigm: Realities of Adult-Based Care for Women’s Research.
Kristin L. Carman, PhD, MA, Director, Public and Patient Engagement, Patient-Centered Outcomes Research Institute (PCORI)
Kristin L. Carman, PhD, is the Director of Public and Patient Engagement at the Patient-Centered Outcomes Research Institute (PCORI). She is responsible for leading and directing PCORI’s overall efforts to see that patients and other health care stakeholders are fully involved in and guiding all aspects of PCORI’s work and developing the science of engagement. Dr. Carman leads a team that helps ensure that PCORI’s unique, community, patient-centered, and partner approach to health care research shapes their research and the culture of research more broadly. She also leads the science of engagement, including the launch of a new PCORI initiative to fund research on engagement.
Dr. Carman previously worked for the American Institutes for Research, where she served as Vice President and Director of the Center for Patient and Consumer Engagement and Director of the Health Policy and Research Group, managing a team of more than 100 health services research professionals. In that role, she helped research issues of public importance in health care quality, access, and financing; comparative effectiveness; patient and family engagement; health systems improvement; public deliberation; and health-related communications.
In that role, she helped research issues of public importance in health care quality, access, and financing; comparative effectiveness; patient and family engagement; health systems improvement; public deliberation; and health-related communications. She led groundbreaking engagement projects funded by the Agency for Healthcare Research and Quality (AHRQ), and numerous foundations including the California HealthCare Foundation, Moore Foundation, and Robert Wood Johnson. She also spearheaded engagement research projects including a randomized clinical trial on deliberative methods, the development of an influential framework on engagement in health care, and the development and translation of complex scientific information and concepts for the public and patients.
Dr. Carman has published extensively and has worked closely with many types of organizations, communities, and individuals in health care organizations throughout her career. She also previously served as an inaugural member of PCORI’s Advisory Panel on Patient Engagement and currently serves on many advisory bodies.
Colonel Steven L. Coffee, Chief of Staff, National Security Agency, Co-Founder, Patients for Patient Safety U.S.
Colonel Steven L. Coffee is a career combat military officer and serves as the Chief of Staff for the National Security Agency Senior Representatives to the Department of Defense and the Defense Intelligence Agency. He has commanded and led at all levels — from the squadron to a directorate at the headquarters level. He also served as a military aide to two U.S. presidents on the social staff where he facilitated the planning and execution of all events and official functions on behalf of the U.S. President and First Lady.
Col. Coffee’s passion for patient safety was birthed through his son’s experience following diagnostic error and lack of patient involvement. He is president and CEO of Head-2-Heart Connections LLC, and a founding member of the Patients for Patient Safety U.S. chapter of the World Health Organization. Additionally, Col Coffee served as a charter member and first community Chair of the MedStar Georgetown University Hospital Patient and Family Advisory
Council for Quality and Safety and sits on Patient and Family Advisory Councils for the MedStar Health System and the Society to Improve Diagnosis in Medicine.
Furthermore, Col. Coffee serves on numerous, national nonprofit boards of directors. He serves on a technical expert panel with the Yale New Haven Health Services Corporation and Center for Outcomes Research and Evaluation and the Centers for Medicare and Medicaid Services (CMS). When he isn’t fulfilling his duty a chair, Col. Coffee works an adjunct faculty member with the MedStar Institute for Quality and Safety, Academy for Emerging Leaders in Patient Safety, and advisor to the Georgetown University Medical School Rare Diseases student organization.
An international speaker and panelist with organizations such as CMS, the Institute for Healthcare Improvement, the National Organization for Rare Diseases, American Association of Retired Persons and the American Academy of Pediatrics, Col. Coffee was recently appointed to the American Board of Internal Medicine Governance Internal Medicine Board. He is a best-selling children’s book author of Baby Steven’s Gift of Life.
Elle Cole, Author, Podcaster
Elle Cole is a dynamic parental advocate, author, and caregiver with a mission to support and educate families facing the challenges of Sickle Cell Disease and Type 1 Diabetes. With a portfolio of over 12 published books, including “The Ultimate Sickle Cell Activity Book,” “ABCs of Sickle Cell Disease,” and “A Sickle Cell Coloring Book for Kids,” Cole is dedicated to empowering young minds and their caregivers. Her advocacy efforts have received numerous accolades, including the Sickle Cell Education Award from Children’s National Hospital, the Caregiver Champion Social Health Network Award, and the Advocating for Another WEGO Health award. Cole collaborates with the Sickle Cell Community Consortium, co-hosting the Annual Sickle Cell Caregiver Summit, where she aims to raise awareness about genetic disorders and autoimmune diseases.
Cole’s contributions extend to important affiliations, including the Cure Sickle Cell Initiative’s Community Input Panel and the Institute for History and Healing. Her multifaceted talents also include motivational speaking, writing, and social media strategy, which she expertly leverages to champion important causes.
Her captivating podcast, “The Cleverly Changing Podcast,” has earned recognition as Feedspot’s #3 on the Top 20 Homeschooling Mom Podcasts list. With an unwavering commitment to empowering mothers, homeschoolers, and advocates for children with special needs, Cole’s presence and resources continue to uplift countless lives.
Featured on NPR, ABC 7, Good Morning Washington, BBC World Service Radio, and guest on several podcasts, Cole is a recipient of a Bronze Congressional Award, a sought-after speaker, and an active advocate in her community. She holds a bachelor’s degree in English and history.
Barbara L. Collura, MA, President & CEO, RESOLVE: The National Infertility Association
Barbara Collura has served as the President/CEO of RESOLVE: The National Infertility Association since 2007. She is a nationally recognized expert on infertility and the family building journey, with a special emphasis on advocacy, public policy, and access to care. Collura has worked with the World Health Organization (WHO) on infertility definitions and clinical guidelines, with ACOG on their clinical definitions for infertility, and served a four-year term on the Advisory Council of the National Institute of Child Health and Human Development at NIH. Along with being a frequent guest speaker at medical conferences, she has been a guest on the TODAY Show, MSNBC, Fox & Friends, and Nightline. She is routinely quoted in major media outlets on a variety of topics related to infertility. In 2014, she received the Distinguished Service Award from the American Society for Reproductive Medicine.
Collura received her undergraduate degree from the University of Montana and her master’s degree in international affairs from American University. She is passionate about RESOLVE’s mission as the organization was a source of support and information during her own battle with infertility.
Sneha Dave, Founder & CEO, Generation Patient
Sneha Dave graduated from Indiana University in May 2020, majoring in chronic illness advocacy and journalism. She created Generation Patient to develop support systems for adolescents and young adults with chronic conditions across the U.S. and internationally. She is proud to work with a team composed of young adults with chronic conditions and to keep Generation Patient independent of funding from the private health care industry.
Dave serves in various advisory capacities, including on the British Medical Journal patient panel, a grantmaking committee with the Robert Wood Johnson Foundation, and the Yale Collaboration for Regulatory Rigor, Integrity, and Transparency. She is also part of the Midwest Comparative Effectiveness Public Advisory Council, an independent appraisal committee of the Institute for Clinical and Economic Review. She was awarded two academic fellowships with the Association of Health Care Journalists and was recognized as an American Association of People with Disabilities Emerging Leader in 2020.
Elizabeth Franklin, PhD, MSW, Head, US Public Affairs and Patient Advocacy, Oncology, Sanofi
Elizabeth Franklin, PhD, MSW, is an advocate for people impacted by cancer and is passionate about ensuring that patient voices are the north star in health care decisions and policy making. Growing up in Kentucky where cancer, cancer mortality, and poverty rates routinely rank among the highest in the country, Dr. Franklin was drawn to this work by witnessing people being left behind and systems that resulted in inequitable care. These values have driven her for almost two decades in oncology patient advocacy, public policy, research, and executive positions in corporate and nonprofit settings.
Currently, Dr. Franklin serves as Head of U.S. Public Affairs and Patient Advocacy in Oncology with Sanofi, an innovative global health care company, where she partners with the U.S. advocacy community to advance innovation, ensure access, and improve health. She previously held positions as president of the Cancer Support Community; Director of Policy and Engagement at the
George Washington University Cancer Institute; Senior Director of Policy and Advocacy with the Prevent Cancer Foundation; and Special Assistant to the Chief Executive Officer at the headquarters of the National Association of Social Workers.
Dr. Franklin earned her doctorate at the University of Maryland School of Social Work, where she focused her dissertation on the ways in which patients define value in the cancer care system and how those definitions can be incorporated into public policy and clinical practice. She obtained her master’s degree in social work from the University of Illinois at Chicago and her bachelor’s degree in social work from the University of Kentucky. She currently resides in Washington, DC and is an avid reader, aspiring banjo player, volunteer crisis counselor, and proud mother of pugs.
Carl V. Hill, PhD, MPH, Chief Diversity, Equity, and Inclusion Officer, Alzheimer’s Association
Carl V. Hill, PhD, MPH, is the chief diversity, equity, and inclusion officer for the Alzheimer’s Association where he oversees strategic initiatives to strengthen the Association’s outreach and support to address the Alzheimer’s crisis. He is responsible for driving messaging and mobilization efforts addressing systemic health inequities in treatment, clinical trials, and research. With support from the National Institute on Aging (NIA), he led the Association’s work on the annual Promoting Diverse Perspectives: Addressing Health Disparities Related to Alzheimer’s and All Dementias Conference.
Dr. Hill develops partnerships with organizations to advance Alzheimer’s and other dementia awareness efforts and to deliver disease education to those who are disproportionately impacted and underserved. As a result of his leadership, the Association has broadened its reach to previously underserved communities with over 30 national partners such as the Thurgood Marshall College Fund, National Indian Council on Aging, Omega Psi Phi Fraternity, Inc., National Black Nurses
Association, National Association of Hispanic Nurses, African Methodist Episcopal Church, and the Buddhist Tzu Chi Foundation. Furthermore, under his guidance, the Association has pursued innovative partnerships, such as collaboration to develop “Unforgettable,” a community-focused play that focuses on a family navigating Alzheimer’s disease and caregiving.
Within the Association, Dr. Hill collaborates with human resources to attract talent and develop resources that champion staff diversity and a culture of inclusion. He authored an editorial in the Journal of New England Medicine (JAMA) Neurology, highlighting the need for more diverse representative perspectives to address disparities and pursue equity in dementia science. His previous positions include the Association’s Vice President of Scientific Engagement and Director of the Office of Special Populations at the NIA.
Dr. Hill earned a PhD from the University of Michigan School of Public Health and a master’s degree in public health from Morehouse School of Medicine, where he received its Distinguished Alumnus Award. He is an alum of the National Medical Fellowships Inc./W.K. Kellogg Foundation Health Policy Fellowship Program.
Taylor Hoffman, MS, Patient Advocate & Medical Student, University of Arizona
Taylor Hoffman is a third-year medical student at the University of Arizona College of Medicine – Phoenix (UACOM-P). As a lifelong patient managing multiple autoimmune diseases including Type 1 Diabetes and Rheumatoid Arthritis, Hoffman has used her extensive lived experiences to influence policy, pass legislation, and teach patient advocacy and access to care insights. As a speaker and moderator for the Arizona Bioindustry Association’s Voice of the Patient event during Arizona Bioscience Week, Hoffman initiated a “From Patient to Physician” panel that focused on how medical students manage their own chronic diseases and become better patient advocates. Her advocacy has resulted in greater inclusion and consideration for medical students with disabilities. Hoffman is also an ambassador for the University of Arizona Health Sciences Center for the Advanced Molecular and Immunological Therapies and looks forward to the innovation, research, and cures that will be discovered on her campus.
Currently, Hoffman is conducting a scholarly research project at Phoenix Children’s Hospital to measure inequitable access to medical devices for children with Type 1 Diabetes.
She co-founded the UACOM-P Law and Medicine interest group, is a volunteer with the Street Medicine intervention team in Downtown Phoenix and was awarded a four-year academic Primary Care Physician Scholarship for her focus on the voice of the patient and her commitment to increase mental health services for patients with chronic diseases.
Hoffman earned a master’s degree in medical studies from the UACOM-P and graduated Summa Cum Laude from Arizona State University with a bachelor’s degree in neurobiology, physiology, and behavior.
Leah M. Howard, J.D., President and CEO, National Psoriasis Foundation
Leah M. Howard, J.D., is the President and CEO of the National Psoriasis Foundation (NPF). She is a lawyer and patient rights advocate leading the largest psoriatic disease support and research nonprofit organization in the world. NPF represents more than 8 million individuals in the U.S. who live with psoriasis and psoriatic arthritis with the shared vision of creating a world free from the burdens of psoriatic disease.
Howard has lived with psoriasis since her early twenties and has more than two decades of experience working with national health and disability organizations, local governments, and leading health care and research institutions. She believes that solving today’s health care challenges begins with talking individuals living with chronic diseases, like psoriasis and psoriatic arthritis. Over the last decade, Howard has empowered people with psoriatic disease to share their challenges with policymakers at the state and federal level, as well as with regulators, and health agency management. This led to a number of improvements for the community including more than 40 new state laws improving access to treatment.
Howard has positioned NPF as a leading voice in efforts to measure value and reflect patient preferences in health outcomes. She has also piloted efforts to engage non-traditional patient advocacy partners including health insurers, pharmacy benefit managers, and employers – beginning with the launch of the NPF Payer Roundtable series in 2016. Under Howard’s leadership, NPF has prioritized serving all segments of the community. Today, NPF connects with over 2.75 million individuals each year through its highly accessible website.
Howard has a bachelor of arts degree in government and international relations from the University of Notre Dame and a law degree from George Mason University School of Law. Howard is based at NPF headquarters in Alexandria, VA.
Teressa Jackson, Caregiver, Hydrocephalus Association
Teressa Jackson is the mother to an amazing 13-year-old son — Aqil Sabour — who was diagnosed with Hydrocephalus at two months old. She lives and works in the Washington DC Metropolitan area and has over 10 years of nonprofit fundraising experience. Jackson is studying for a bachelor’s degree in English at the University of Maryland’s Global Campus with aspirations of advancing to Law School. She has a strong work ethic and enjoys being of service to others. She appreciates the opportunity to volunteer with the Hydrocephalus Association’s “WALK to End Hydrocephalus” Committee. She likes traveling and loves vacations at the beach.
Devin Jopp, Ed.D., President and Chief Executive Officer, Association for Professionals in Infection Control (APIC)
Since 2020, Devin Jopp, Ed.D, has served as the Chief Executive Officer for the Association for Professionals in Infection Prevention & Control (APIC), the leading professional association for infection preventionists (IPs), with approximately 15,000 members located across the U.S. and more than 70 countries. His career has spanned over 25 years in nonprofit leadership. Prior to coming to APIC, he served as CEO of the American College Health Association. Earlier in his career, Dr. Jopp served as Chief Operating Officer for the Service Corp of Retired Executives (SCORE), a leading national entrepreneurship mentoring and training nonprofit during the “Great Recession “in 2008. He has also served as the Chief Administrative Officer at URAC, an independent, nonprofit health care accreditation organization and Chief Operating Officer of Business Programs and Chief Information Officer for the Health Insurance Association of America (HIAA).
He has been recognized as one of the top 100 most influential health care leaders in the world, one of the top 50 health care IT experts in the U.S., and a top association
leader. Dr. Jopp serves on the Forbes Nonprofit Council and on the Fast Company Executive Board, where he is a frequent contributor and influencer.
Dr. Jopp holds a bachelor’s in computer information systems from the College of Notre Dame of Maryland, a Master of Science in computer and information sciences from Hood College and a Doctor of Education from George Washington University’s executive leadership program in human and organizational learning. He currently serves on the Board of Directors for the National Health Council (NHC).
Elsa Kendall, Student, Patient advocate, Founder, The Red Ink Project
Diagnosed at the age of six with hemophilia, a rare bleeding disorder, Elsa Kendall has nearly a decade of experience in patient and personal advocacy. As a young woman with an X-linked genetic disorder, Kendall is passionate about improving health equity in research, diagnosis, and care. In 2024, she founded the Red Ink Project, a nonprofit dedicated to rewriting the narratives of women and girls with bleeding disorders through storytelling and education. Through the Red Ink Project, Kendall is also working to raise awareness about issues uniquely affecting women and girls with bleeding disorders, including newborn screening protocols, unequal representation in research, and the period tax. Kendall is currently a senior in high school.
Annie Kennedy, Chief of Policy, Advocacy, and Patient Engagement, EveryLife Foundation for Rare Diseases
A veteran leader in the rare disease, patient-focused, drug development movement, Annie Kennedy joined the EveryLife Foundation in 2018, where she’s led the Cost of Delayed Diagnosis: A Health Economic Study, the National Economic Burden of Rare Disease study, the development of the ICD Code Roadmap, the Newborn Screening Modernization Roundtable series, and the community-driven Guide to Patient Involvement in Rare Disease Therapy Development. She previously held leadership roles at Parent Project Muscular Dystrophy (PPMD) and the Muscular Dystrophy Association (MDA), where she led landmark legislative, regulatory, newborn screening, supporting the clinical and policy transition from pediatrics to adulthood, and access policy efforts. She is a sought-after advisor to patient-centered organizations and initiatives across the nonprofit and government sectors.
Kennedy’s community roles include service on the Board of Directors of Cure SMA; the Patient Driven Values in Healthcare Evaluation (PAVE) Steering Committee; the Patient Centered- Core Impact Set (PC-CIS) Steering Committee; the National Health Council’s (NHC) Valuation Group; the Innovation and Value Initiative (IVI)
Patient Advisory Committee; the National Duchenne Newborn Screening Steering Committee; the Institute for Gene Therapies (IGT) Patient Advocacy Advisory Council; a co-lead with IVI Engaging Patients with Rare Disease in Identifying Meaningful Approaches to CER and Value Assessment (PCORI award); the NIH Strategic Planning Working Group on Engaging the Public as Partners in Clinical Research (NexTRAC); Co-Chair of the MD Action Plan “Living With MD” Working Group of the Muscular Dystrophy Coordinating Committee (MDCC, NIH); and as a member of the NIH National Center for Advancing Translational Sciences (NCATS) Advisory Council.
Adrianna Nava, PhD, MPA, MSN, RN, Research Scientist, National Committee for Quality Assurance
Adrianna Nava is a Research Scientist at the National Committee for Quality Assurance (NCQA) where she serves as the scientific lead for the development of measures addressing the social determinants of health (SDOH). She is also the President of the National Association of Hispanic Nurses (NAHN), where she is an advocate for addressing health disparities through the advancement of nurses in leadership, research, and policy. She is an Adjunct Instructor at Emory University’s Nell Hodgson Woodruff School of Nursing and Capstone Faculty for the Safety, Quality, Informatics and Leadership (SQIL) Program at Harvard Medical School. Previously, she served as the Chief of Quality at the Edward Hines Jr. VA Hospital in Hines, IL.
Nava has a Master of Public Administration degree from Harvard University; a doctorate in Nursing and Health Policy from the University of Massachusetts Boston; a Master Science in Nursing degree in Health Leadership and Policy from the University of Pennsylvania; and a Bachelor of Science in Nursing from Saint Francis Medical Center College of Nursing. She was recently named one of the Top 25 Emerging Healthcare Leaders of 2023 by Modern Healthcare.
Ushma Patel, MSPH, PMP, Director of Patient Engagement, Innovation and Value Initiative
Ushma Patel, MSPH, PMP, is a public health professional, patient advocate, and strategic leader with over 18 years of health policy, patient engagement, and qualitative research experience.
Patel is passionate about authentic patient collaboration and empowering women to trust their own instincts. As a preeclampsia and stroke survivor, and mother of a child with a rare disease, she shares her story on state and national levels with patients, caregivers, and providers to spread awareness and hope for moms and children with genetic conditions
Currently, Patel is the Director of Patient Engagement at the Innovation and Value Initiative where she oversees the IVI Patient Advisory Council and ensures the patient voice is captured in all research initiatives. Prior to joining IVI,she was the Director for Special Projects and Educational Programs at the Institute for Patient- and Family-Centered Care.
She worked for almost a decade at the American Institutes for Research where she was an integral part of developing the AHRQ-funded Guide to Patient and Family Engagement resource and assisted hospitals with their engagement strategy for the CMS Partnership for Patients initiative.
Patel has served on numerous patient advisory councils for nonprofit organizations and for health systems. She currently serves on the UNC Rex Hospital Postpartum Advisory Council. In addition, she was a patient partner on the North Carolina Maternal Child Health Equity Action Network for the Foundation for Health Leadership and Innovation and a patient advisor for the Duke Children’s Hospital Pediatric and Congenital Heart Center and the Preeclampsia Foundation.
Patel earned her bachelor’s degree in public health from George Washington University and her master’s degree in health policy from the Gillings School of Global Public Health at the University of North Carolina Chapel Hill. She resides in Raleigh, NC, with her husband and two beautiful kids.
Dr. Adriana Perez, PhD, ANP-BC, FAAN, Anthony Buividas Term Chair, Gerontology, Associate Professor of Nursing, University of Pennsylvania, School of Nursing
Dr. Adriana Perez is the Anthony Buividas Term Chair in Gerontology, Associate Professor of Nursing and Senior Fellow at the Leonard Davis Institute of Health Economics at the University of Pennsylvania School of Nursing. Her program of research, funded by the National Institutes of Health/National Institute on Aging (NIH/NIA) and the Alzheimer’s Association, is focused on the influence of multi-level factors on physical activity, cognitive health, cardiovascular health and sleep among Spanish-speaking older Latinos with Alzheimer’s Disease and related dementias (ADRD) and on changing the culture of Alzheimer’s disease and related dementias (ADRD) clinical trials to be more inclusive.
Dr. Perez is a bilingual/bicultural scientist at the Center for Improving Care Delivery for the Aging, Penn’s Resource Center for Minority Aging Research (RCMAR) and a board-certified Adult Nurse Practitioner, providing community based long-term care for diverse, frail elders who reside in North Philadelphia.
She served as Policy Advisor of the National Association of Hispanic Nurses (NAHN), Public Policy Committee and was selected as a Congressional Fellow supported by the Atlantic Philanthropies and Centers for Disease Control and Prevention Healthy Aging Program to work with Latino city planners, local policymakers, stakeholders, and residents to inform environmental policies that promote healthy aging.
Dr. Perez received the Research Recognition Award from the National Hispanic Council on Aging, the Senior Scholar Award for Research Related to Disadvantaged Older Adults by the Gerontological Society of America, and the Janie Menchaca Leadership Award from the National Association of Hispanic Nurses. She is a Fellow of the Gerontological Society of America and of the American Academy of Nursing, where she served as Chair of the Expert Panel on Aging. She earned her bachelor’s, master’s, doctoral degrees, and Claire M. Fagin Post-doctoral Fellowship from Arizona State University, College of Nursing and Health Innovation.
Kathryn Schubert, MPP, CAE, President & CEO, Society for Women’s Health Research
Kathryn (Katie) Schubert joined the Society for Women’s Health Research (SWHR) as President and CEO in April 2020. Under Katie’s leadership SWHR developed a strategic plan focused on fulfilling the organization’s mission of promoting research on biological sex differences in disease and improving women’s health through science, policy, and education. She previously worked for the Society for Maternal-Fetal Medicine (SMFM), where she served as the organization’s chief advocacy officer, growing SMFM’s role nationally and building its reputation in women’s health.
Katie is a trusted leader and consensus builder among women’s health stakeholders, particularly in the policy arena. She has served in multiple Board roles for nonprofit organizations in the Washington, DC-area, including as Chair of the Board of the Maternal Mental Health Leadership Alliance and as advisor to the John E. Lewy Fund for Children’s Health. She is a past president of Women in Government Relations.
Prior to SMFM, Katie served as senior vice president at CRD Associates, where she advised clients — including nonprofit patient advocacy groups, medical professional organizations, and private companies — on government relations and public policy related to health and biomedical research issues, among others. She has also spent time working in key legislative roles on Capitol Hill. She received her BA from Mary Washington College and her Masters of Public Policy from George Washington University. Katie lives in Virginia with her husband, three children, and dog George.
Jonathan Shepherd, MD, Child, Adolescent & Adult Psychiatrist, Chief Clinical Officer, District of Columbia, Department of Behavioral Health
Dr. Jonathan Shepherd is a board-certified child, adolescent, and adult psychiatrist, who works with children and their families as well as adults. Renowned for his caring and nurturing bedside manner, Dr. Shepherd serves and provides treatment for clients in various areas, including anxiety and mood disorders, ADHD, and PTSD, among others. In addition to the Ross Center, Dr. Shepherd is also employed as the Chief Clinical Officer for the Department of Behavioral Health for the entire District of Columbia, where he is responsible for the development, management, and oversight of the public behavioral health system for adults, children, and their families. His mission is to improve the well-being and mental health outcomes of children and adults by providing evidence-based, culturally responsive, and trauma-informed care. With a focus on family, he strongly involves parents in treatment to minimize conflicts, enhance communication, ensure medication compliance, and resolve family challenges. Dr. Shepherd considers all of a patient’s medical conditions and collaborates with fellow providers to ensure optimal care.
He also offers prenatal care for pregnant women with mental health concerns. Sensitive to issues of race, religion, and culture, he develops treatment plans that honor a patient’s background and personal experiences in developing treatment plans that will have the greatest impact on mental health.
Dr. Shepherd was bestowed the honor of Fellow by the American Psychiatric Association in 2020 and Distinguished Fellow by the American Academy of Child and Adolescent Psychiatry in 2019 for representing excellence and his significant contributions to the field of psychiatry. In February 2024, he was inducted into the American College of Psychiatrists. He serves on numerous boards and participates in several organizations that impact and shape the programs for the mental well-being of persons in diverse settings and various communities. He also serves as the President of the Board of Directors of the Black Mental Health Alliance, a nonprofit organization that advocates for the mental health needs of the African American community.
Dr. Shepherd is a graduate of the University of Illinois at Chicago Medical School and Adult Psychiatry Program and the Johns Hopkins University Child and Adolescent Psychiatry Fellowship.
Maanya Tarnal, Undergraduate Student and Patient Advocate, Epilepsy Foundation of America
Maanya Tarnal is an undergraduate student at the University of Michigan in Ann Arbor. At the age of 16, she was diagnosed with epilepsy and found it hard to navigate her life living with it. Three years after her diagnosis, Tamal began volunteering her time at the Epilepsy Foundation of Michigan during their conferences and found her passion: public health.
Last summer, Tarnal served as the public health intern at the Epilepsy Foundation of Michigan. During her time there, she helped to conduct the 2023 Michigan Epilepsy Needs Based Assessment and analyzed the data collected. The assessment was designed for people with epilepsy as well as their families and friends to share their experiences and needs, both medically and in areas of quality of life.
Leanne West, President, International Children Advisory Network (iCAN) and Chief Engineer of Pediatric Technology, Georgia Institute of Technology
Leanne West is the Chief Engineer of Pediatric Technology at the Georgia Institute of Technology where she serves as the technical liaison between Georgia Tech and children’s hospitals to identify unmet clinical needs and provide solutions. She is also President of the International Children’s Advisory Network (iCAN), a nonprofit that promotes the importance of the pediatric patient experience and input in medical research and development. iCAN is a partner in the FDA CDRH Patient and Caregiver Connection and the Total Product Life Cycle Advisory Program. West is a member of the International Society for Pediatric Innovation Executive Team; Patient Focused Medicines Development Board; the steering committees for the Pediatric Trial Network (PTN) and Multi-Regional Clinical Trials (MRCT) Center of Brigham and Women’s Hospital and Harvard (MRCT); a member of the Medical Device Innovation Consortium (MDIC) Patient Preference Information committee; the MDIC National Evaluation System for health Technology Coordinating Center (NESTcc) governing committee; the Technology Association of Georgia Digital Health Board; and the Georgia Technology Authority Board.
In 2014, West was named Women in Technology’s Woman of the Year. She is a patient herself, with two rare diseases, and currently serves on the Foundation for Sarcoidosis Research Patient Advisory Committee.