2026 Science of Patient Engagement Summit
Turning Evidence into Impact

May 11 – 12, 2026
Day 1: 8:30 a.m. – 6:30 p.m. ET | Day 2: 7:30 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. – 6:30 p.m.
Registration Open

9:00 a.m. – 12:00 p.m.
Under the Microscope: A Blueprint for Patient Engagement Success (Open to all attendees)

Facilitator:
Dan Weston, Owner, C2 Development, LLC

Background
Meaningful patient engagement requires the right infrastructure and investment to drive change across the health sector. 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 knowledge to strengthen patient partnership and improve decision-making processes.

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.

Case studies, small-group discussions, and hands-on activities will be used to identify practical applications and gather ideas for future improvements.

Transforming Systems Through Patient Engagement: Real-World Case Studies

Moderator:
  • Silke Schoch, MA, Senior Director, Research & Programs, National Health Council

Panel Speakers:
  • Shawn F. Gremminger, MPP, President & CEO, National Alliance of Healthcare Purchaser Coalitions
  • Gerry Langan, Patient Advocate
  • Raj Ratwani, PhD, Vice President of Scientific Affairs, MedStar Health Research Institute

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.

12:00 – 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

Keynote Speaker:
 • 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  

Dr. David Fajgenbaum brings a powerful perspective on patient-driven innovation to transform the treatment and survival of patients with rare conditions, shaped by his own experience surviving Castleman disease. In this keynote, he will share how he leveraged his medical expertise to identify and repurpose existing treatments to save his own life, and how that approach is now being scaled to uncover new therapeutic options for others. His work demonstrates how patient engagement can accelerate discovery and translate evidence into meaningful impact for patients with rare conditions.

2:00 – 3:00 p.m.               
Session 1: Patient Leadership in Action: Powering Innovation Across the Health Ecosystem (60 mins)
This session will explore how patients, caregivers, and other 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: 
  • Chance Browning, Chief Operating Officer, Caregiver Action Network  

Panelist:   
• Ronika Alexander-Parrish, MEd, US Medical Director, Population Health Innovation and Equity, Director, Doctor of Public Health
   Fellowship in Vaccines Medical Development, Pfizer 
 • Tamika Felder, Founder and Chief Visionary Officer, 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

Panelists:   
 • Annie Kennedy, Chief Mission Officer, EveryLife Foundation for Rare Diseases
 • Hilary Marston, MD, MPH, Principal, Drug & Biological Therapies, Canal Row Advisors 
 • John M. O’Brien, PharmD, MPH, President and Chief Executive Officer, National Pharmaceutical Council

4:15 – 5:00 p.m.                 
Fireside Chat:  Beyond Engagement: Designing Healthcare Systems Patients Can Trust (45 min)

Moderator:  
 • Shyrea Thompson, Founder & Principal, The Iris Collaborative

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

In this fireside chat, emergency physician and health equity leader Dr. Uché Blackstock will share her personal journey and explore how structural racism shapes health care access, experiences, and outcomes for Black patients. Drawing on her work as a practicing emergency physician and health communicator, she will discuss the importance of building more equitable, patient-centered systems and the role of trust, communication, and accountability in advancing health equity.

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

Remarks by:

 • Celina Gorre, MPH, MPA, Chief Executive Officer, WomenHeart

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

Day 2

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

7:30 a.m. – 4:30 p.m.            
Registration Opens

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

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

Remarks by:
 • Devin Jopp, EdD, MS, Chief Executive Officer, Association for Professionals in Infection Control and Epidemiology                                      

9:15 – 10:00 a.m.             
Opening Keynote Day 2 (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 how health information is communicated and understood. In his keynote, he will explore the role of medical storytelling in bridging the gap between clinical expertise and public understanding, demonstrating how clear, engaging communication can help patients better understand their health and navigate care decisions.

10:00 – 11:00 a.m.           
Session 3: Women Trailblazers in Modernizing Clinical Research (60 min)

This session highlights how women are redefining how clinical trials are designed, implemented, and integrated into real-world care. Leaders from research, clinical practice, and industry will discuss how they are driving innovations that make trials more inclusive, efficient, and responsive to patient and community needs. The conversation will explore forward-thinking strategies—including adaptive and hybrid designs, equitable recruitment approaches, patient-informed outcomes, and the responsible use of digital tools and AI—to accelerate evidence generation and improve care across the health ecosystem.

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

Panelists: 

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

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

11:15 a.m. – 12:00 p.m.    
Fireside chat: The Science to Social Connection and Longevity (45 mins)

Moderator:
 • Randall Rutta, MA , Chief Executive Officer, National Health Council

Speaker: 
 • Ken Stern, Founder & Chair, Longevity Project; CEO, Palisades Media Ventures 

Founder and Chair of the Longevity Project and author Ken Stern will explore how social connection influences health and longevity in a fireside chat. Drawing on global examples, this conversation will explore how stronger social networks and community engagement can improve well-being and health outcomes, and what these insights mean for patients and the broader health care system. 

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 

Panelists:
 • Caroline DeLongchamps, Program Director, Patient-and Family-Centered Care, Quality and Safety, MUSC Health System
 • Kimberly LeBlanc, MS, CGC, Senior Director, Undiagnosed Disease Network (UND) Coordinating Center  
 • Susan Sheridan, MIM, MBA, DHL, Founding Member, Patients for Patient Safety (PFPS) US

2:00 – 2:45 p.m.               
Closing Keynote (45 min)

Keynote Speaker: 
 • Anita Ravi, MD, MPH, MSHP, FAAFP, Chief Executive Officer & Founder, PurpLE Health Foundation 

Family physician and public health leader Dr. Anita Ravi is a practitioner focused on advancing care for survivors of gender-based violence. In this interactive keynote, she will explore how unmet patient needs can be better addressed through more responsive care models, improved communication, and stronger integration of patient perspectives into clinical practice and research.

2:45 – 3:00 p.m.               
Closing Remarks 

 

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

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