2024 Science of Patient Engagement Symposium

Patient Experiences through their Lifespan 

 

May 8 – 9, 2024 

12:00 – 5:00 p.m. ET | 8:00 a.m. – 2:00 p.m. ET 

National Press Club  

Washington, DC

*Agenda is subject to change due to speakers’ availability.

Wednesday, May 8 

11:30 a.m. –  6:00 p.m.       Registration Opens

12:00 – 1:00 p.m.                 Hosted Lunch

1:00 – 1:30 p.m.                   Welcome & Introductions  

                                               Remarks by: 
                                             • Randall Rutta, MA, Chief Executive Officer, National Health Council
                                             • Omar A. Escontrías, DrPH, MPH, Senior Vice President, Equity, Research & Programs, National
                                                   Health Council

1:30 – 2:00 p.m.                   Keynote Speaker

                                               Moderator: 
                                            • Kathryn G. Schubert, MPP, CAE, President & CEO  Society for Women’s Health Research                                     

                                                Speaker:
                                             • Anita Ravi, MD, MPH, MSHP, FAAFP, CEO, Co-Founder, PurpLE Health Foundation

2:00 – 2:45 p.m.                  Session 1: It’s Never Too Early: Engagement with Pediatrics and Caregivers
                                               Pediatric patient engagement is crucial in research. This session will explore the opportunities and complexities
                                               of involving children and their families in health care decision-making and research as equal partners. This
                                               session will also highlight medical innovation empowering the pediatric population to fully participate in
                                               research and patient engagement activities.  

                                               Moderator:
                                             • Elle Cole, Author, Podcaster, and Advocate

                                                Panel:
                                             • Leanne West, President, International Children Advisory Network (iCAN) and Chief Engineer of Pediatric Technology,                                                     Georgia Institute of Technology
                                             • Colonel Steven L. Coffee, Chief of Staff, National Security Agency, Co-Founder, Patients for Patient Safety U.S.

2:45 – 3:00 p.m.                   Break

3:00 – 3:45 p.m.                  Session 2: Future GOATs: Engaging with the Adolescent Community #IYKYK
                                               With more than 40 million adolescents in the U.S., it is critical we understand how data drives changes in
                                               health outcomes on important issues to this population. While, adolescents are savvier with technology,
                                               compassionate about social issues, and the future greatest of all time (GOATs), engaging adolescents in a
                                               meaningful way may provide clinicians, researchers, and other health care providers to address their needs by
                                               advancing research and clinical care.  

                                              Moderator: 
                                            • Annie Kennedy, Chief of Policy, Advocacy & Patient Engagement, EveryLife Foundation for Rare Diseases

                                               Panel:
                                            •  Jonathan Shepherd, MD, Child, Adolescent & Adult Psychiatrist, Chief Clinical Officer, District of Columbia,
                                                  Department of Behavioral Health   
                                            • Elsa Kendall, Patient Advocate, EveryLife Foundation for Rare Diseases
                                            • Teressa Jackson, Caregiver, Hydrocephalus Association

3:45 – 4:00 p.m.                  Break

4:00 – 4:40 p.m.                  Session 3: Taking Ownership in the Transition of Care from Pediatrics to Young Adult 
                                               The transition of care from pediatric to young adults is challenging and requires a scientific approach and
                                               engagement in this next phase of the lifespan. Panelists of this session will illuminate the challenges and
                                               opportunities from the young adult lens.    

                                               Moderator:
                                            • Sneha Dave, Founder & CEO, Generation Patient

                                               Panel: 
                                            • Taylor Hoffman, MS, Patient Advocate & Medical Student, University of Arizona
                                            • Maanya Tarnal, Patient Advocate, Epilepsy Foundation of America

4:40 – 4:45 p.m.                   Closing Remarks

                                                 Remarks by:
                                              • Leah Howard, JD, President and CEO, National Psoriasis Foundation

5:00 – 6:30 p.m.                   Reception (By Invitation Only)

Thursday, May 9
8:00 a.m.                              Registration Open

8:15 – 9:15 a.m.                     Networking Breakfast  

9:15 – 9:30 a.m.                    Welcome & Introductions   

9:30 – 10:00 a.m.                 Keynote Speaker 

                                               Moderator:
                                            • Devin Jopp, EdD – President and CEO, Association for Professionals in Infection Control and Epidemiology
                                                  (APIC)

                                            AI and Patient Engagement Across the Lifespan 
                                               Speaker:
                                             • Kapil Parakh, MD, MPH, PhD – Author & Senior Medical Lead, Google

10:00 – 10:45 a.m.               Session 4: Disrupting the Paradigm: Realities of Adult-Based Care for Women’s Research
                                               Women encounter a variety of diseases and conditions that increase the likelihood of serious health
                                               diagnoses including cardiovascular disease, diabetes, and cancer-specific conditions. This session explores the
                                               challenges for individuals at the prime years of their lives to pivot, adjust accordingly, and create pathways for
                                               continued clinical care while also adapting to new realities impacting their quality of life. 

                                               Moderator:
                                            • Tina Aswani-Omprakash, MPH, Senior Director, Strategic Partnerships, Sommer Consulting, & Patient
                                                  Advocate

                                               Panel:
                                            • Elizabeth Franklin, PhD, MSW, Head, U.S. Public Affairs and Patient Advocacy, Oncology, Sanofi
                                            • Ushma Patel, MSPH, PMP, Director of Patient Engagement, Innovation and Value Initiative
                                            • Barbara L. Collura, MA, President & CEO, RESOLVE: The National Infertility Association

10:45 – 11:00 a.m.              Break

11:00 – 11:30 a.m.               Session 5: Foundational Expectations for Partnerships in Research
                                             The natural process of aging includes the monitoring and caring of physical, mental, and cognitive well-being.
                                             Long-term issues such as Osteoporosis, Alzheimer’s, and Dementia are just a few health considerations that
                                             people may face with age as their needs shift in the healthcare space. This session will focus on how
                                             organizations can utilize new innovations, acknowledge changes in older patient needs, and assist in this
                                             transition and engagement. 

                                             Speaker:
                                          • Kristin Carman, PhD, MA, Director, Public and Patient Engagement, Patient-Centered Outcomes Research
                                               Institute (PCORI)

11:30 a.m. – 12:00 p.m.      Working Session: Problems, Solutions, and Practices. Applying knowledge to the patient
                                           engagement challenges of tomorrow

12:00 – 1:00 p.m.                Lunch Break

1:00 – 1:45 p.m.                  Session 6: Pearls of Wisdom: Navigating the Health System in the Face of Ageism
                                             The natural process of aging includes the monitoring and caring of physical, mental, and cognitive wellbeing.
                                             Long-term issues such as Osteoporosis, Alzheimer’s, and Dementia are just a few health considerations that
                                             people may face with age as their needs shift in the healthcare space. This session will focus on how
                                             organizations can utilize new innovations, acknowledge changes in older patient needs, and assist in this
                                             transition and engagement.

                                            Moderator: 
                                         • Adrianna Nava, PhD, MPA, MSN, RN, President, National Association of Hispanic Nurses and Research Scientist,
                                              NCQA                       

                                            Speakers: 
                                         • Adriana Perez, PhD, ANP-BC, FAAN—Anthony Buividas Term Chair in Gerontology, Associate Professor of
                                              Nursing, University of Pennsylvania, School of Nursing
                                         • Carl V. Hill, PhD, MPH, Chief Diversity, Equity, and Inclusion Officer, Alzheimer’s Association

1:45 – 2:25 p.m.               Session 7: Final Keynote Remarks: Advancing Health Equity through Clinical Trial Diversity

                                            Moderator:
                                         • Omar A. Escontrías, DrPH, MPH, Senior Vice President, Equity, Research & Programs, National

                                            Speaker:
                                         • Namandjé Bumpus, PhD, Principal Deputy Commissioner, Food and Drug Administration
                                            (FDA)

2:25 – 2:30 p.m.                Closing Remarks and Symposium Concludes

                                             Remarks by:
                                          • Omar A. Escontrías, DrPH, MPH, Senior Vice President, Equity, Research & Programs, National