2026 Science of Patient Engagement Summit
Turning Evidence into Impact

May 11 – 12, 2026
Day 1: 9:00 a.m. – 6:30 p.m. ET | Day 2: 8:00 a.m. – 4:30 p.m. ET

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

Day 1

Monday, May 11 – 8:30 – 11:30 a.m.
8:30 a.m. – 6:00 p.m.
Registration Opens 

9:00 – 11:30a.m.
Under the Microscope: A Blueprint for Patient Engagement Success (Open to all attendees)

This interactive workshop will highlight how the National Health Council’s (NHC) practical tools are equipping health systems, biopharmaceutical companies, payers, data systems, etc. with the practical tools to strengthen patient partnership and improve decision-making. These resources—are designed to make patient partnerships easier, more meaningful, and more effective across the health ecosystem.

Attendees will explore how these tools are being used today, why they were created, and how they can support stronger collaboration in real-world settings. The session will feature hands-on activities, case-studies, small-group discussions, and brainstorming exercises to identify practical uses and gather ideas for future improvements. 

By attending this interactive workshop:  

• • You will leave with the tools to translate patient engagement into better outcomes. 
  • You will connect with leaders in the health ecosystem that are prime to patient engagement implementation.  
  • You will enhance operational procedures through effective patient engagement strategies.

11:30 a.m. – 1:00 p.m.       
Networking Lunch

1:00 – 1:15 p.m.                  
Welcome & Introductions

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

1:15 – 2:00 p.m.                  
Keynote 1 (45 min): From Chasing My Cure to Every Cure: How Patient Engagement Can Rapidly Turn Evidence into Impact  

 • David Fajgenbaum, MD, MBA, MSc, Co-Founder & President, Every Cure; Co-Founder & President; Castleman Disease Collaborative Network, Associate Professor of Medicine, University of Pennsylvania School of Medicine  

In this session, physician-scientist and co-founder of Every Cure, Dr. David Fajgenbaum brings a powerful perspective on patient-driven innovation to transform the treatment and survival of patients with rare conditions. His keynote will follow his personal experience battling Castleman disease, how he utilized his medical expertise to uncover hidden cures by repurposing existing treatments to save his own life, and his approaches to determine repurposed treatments to save others. 

2:00 – 3:00 p.m.               
Patient Leadership in Action: Powering Innovation Across the Health Ecosystem (60 mins)
This session will explore how patients, caregivers, and patient organizations build partnerships across sectors to improve health outcomes. Attendees will learn best practices through lessons learned from current and past NHC patient-centered research.

Moderator: 
  • Marvell Adams Jr., Chief Executive Officer, Caregiver Action Network  

Panelist:   
 • Tamika Felder, Chief Visionary, Cervivor, Inc. 
 • Patrick Gee, PhD, JLC, Founder & CEHD, iAdvocate, Inc. & P.Gee Consulting, LLC 

3:00 – 3:15 p.m.                 
Break (15 min)

3:15 – 4:15 p.m.                  

Session 2: Research at a Crossroads: Navigating Policy Change and Driving Progress (60 min) 
In the current climate policy can shift in a short period of time, often impacting funding and the trajectory of research. This session will explore how organizations, researchers and patient advocates are enduring amid change – navigating regulatory shifts, funding constraints, and expectations for evidence generation. Panelists will discuss their experiences on maintaining scientific integrity and translating research into policy impact.   

Moderator: 
 • Tim Vaske, Senior Director, Federal Issue Advocacy & Alliance, Genentech

Speakers:   
 • Annie Kennedy, Chief Mission Officer, EveryLife Foundation for Rare Diseases
 • Hilary Marston, MD, MPH, Principal, Drug & Biological Therapies, Canal Row Advisors 

4:15 – 5:00 p.m.                 
Fireside Chat (45 min) 

Guest Speaker: 
 • Uché Blackstock, MD, Founder and Chief Executive Officer, Advancing Health Equity                                  

In this patient moderated fireside chat, Founder, and CEO of Advancing Health Equity, Dr. Uché Blackstock will discuss her personal journey and the critical intersection of racism and its impact on healthcare and health outcomes for Black populations. Dr. Blackstock is a practicing emergency physician and health communicator who aims to address health inequities.  

5:00 p.m.                           
Closing Remarks (5 min)

5:00 – 6:30 p.m.
Poster Exhibition and Hosted Reception–Remarks by Amazon Leadership

Day 2

Tuesday, May 12 – 8:00 a.m. – 4:30 p.m.

8:00 a.m.                          
Registration Opens

8:00 – 8:45 a.m.               
Networking Breakfast

8:45 – 9:15 a.m.               
Welcome & Introductions

Remarks by:
 • Research and Programs Committee Member of the NHC Board of Directors.                                              

9:15 – 10:00 a.m.             
Keynote 3 (45 min)

Moderator:
 • Omar A. Escontrias, Chief Programs & Research Officer, National Health Council

Keynote Speaker:  
 • Alok Patel, MD, Pediatric Hospitalist, Stanford Medicine, Columbia University, and University of California, San Francisco; ABC News Special Correspondent, Award Winning Journalist

Public health advocate, physician, and journalist, Dr. Alok Patel is a practicing pediatric hospitalist and academic who is developing new strategies to advance the field of health communications. His keynote will highlight his experience in medical storytelling, combining media and health education to living healthier and longer, while making healthcare easier to understand.  

10:00 – 11:00 a.m.           
Session 3: Women Trailblazers in Modernizing Clinical Research (60 min)
This panel will explore how researchers, clinicians, and industry partners are modernizing the clinical trial process to make it more inclusive, efficient, and relevant to real-world care. Panelists will discuss practical approaches such as adaptive and hybrid trial designs, improved recruitment strategies, patient-informed endpoints, and responsible integration of digital tools and AI.

Moderator: 
 • Alayna Effron, Ed.D, Msc., C.H.E.S, VP, Strategic Partnerships, HealthyWomen  

Panelist: 

 • Kasey Boynton, MPH, DrPH, Senior Director, Global Operations & Partnerships Lead, Sanofi 
 • Melissa Penn, JD, MPH, Director, Patient Engagement, Research & Development, Bayer 
 • Amber McCracken, Senior Director, Programs and Impact, PAN Foundation 

11:00 – 11:15 a.m.              
Break (15 min)

11:15 a.m. – 12:00 p.m.    
Fireside side chat—The Science to Social Connection and Longevity

 • Ken Stern, Former CEO of National Public Radio (NPR)

Former CEO of the National Public Radio and author of Healthy to 100, Ken Stern looks at international examples of social health that advance longevity for a longer and healthier life. This fireside chat will examine the importance of social impact and how patients can build connections to improve overall healthcare outcomes.   

12:00 – 1:00 p.m.             
Lunch Break (60 min)

1:00 – 2:00 p.m.              
Session 4: Building a Smarter, Fairer Diagnostic Health Ecosystem (60 min)  
Accurate and timely diagnosis is essential to quality care, yet gaps in access, data, and adoption of new solutions continue to create uneven outcomes for patients. Panelists will unpack long-standing barriers—such as communication breakdowns, siloed data, and misaligned incentives—while highlighting promising approaches that use technology, better data sharing, and patient-centered design to improve accuracy and trust. Together, we’ll examine practical steps the health ecosystem can take to expand access, modernize diagnostic pathways, and deliver better outcomes for all.

Moderator:  
 • Caitlin Grzeskowiak, PhD, Chief Research & Innovation Officer, Epilepsy Foundation 

Speakers: 
 • Susan Sheridan, MIM, MBA, DHL, Founding Member, Patients for Patient Safety (PFPS) US
 • Kimberly LeBlanc, MS, CGC, Senior Director, Undiagnosed Disease Network (UND) Coordinating Center  

2:00 – 2:45 p.m.               
Closing Keynote (45 min)
 • Anita Ravi, MD, MPH, MSHP, FAAFP, Chief Executive Officer & Founder, PurpLE Health Foundation 

In this interactive closing keynote, Founder and CEO of PurpLE Health Foundation, Dr. Anita Ravi, will be using her expertise in healthcare communication to illuminate how patients’ unmet needs can be better addressed in clinical and research spaces. Dr. Ravi is a practitioner focused on advancing gender-based violence care for women. 

2:45 – 3:00 p.m.               
Closing Remarks 
 • Omar A. Escontrías, DrPH, MPH, Chief Programs & Research Officer, National Health Council

3:00 – 4:30 p.m.               
Reception & Poster Display