More than 160 patient organization, partners of patient organizations, business representatives, and thought leaders came together in Fort Lauderdale, FL on Feb. 4 – 6, 2025, to cultivate connections and create space for discussions on timely leadership topics, learn best practices and trends in nonprofit organization management, and discuss emerging issues in health care policy. In addition to the sessions outlined below, attendees participated in networking and social events such as a volunteer opportunity at the Pantry of Broward, an Opening Night reception, sound bath meditation, networking breakfast, and a partner network reception. The following is a summary of the topics covered during the 2025 Health Leadership Conference. 

Tues. February 4 
CEO/Board Only Session 

AI Horizons: Steering Teams Towards Tomorrow’s Tech Triumphs

Kiki L’Italien, VP, Marketing & Community Engagement, Big Red M 

The session highlighted the need for AI governance to report directly to the CEO and Board, given the increasing value of knowledge as a resource, and recommended establishing an internal AI standing committee. It also explored AI education and leadership and introduced a basic AI investment covering direct and hidden costs, risk categories, and benefits.  Discussions on AI trust and ethics underscored that any data shared with large language models should be publicly shareable, while also addressing concerns about patient privacy.  

Key takeaways:  

• • Trust is one of the biggest assets a non-profit has. If your data is gold, then the trust in your data is platinum 
  • Auditing your organization’s current IT should be a top priority—you are most likely already using AI without realizing it. 
  • Using a closed network can help you control what outputs chatbots put out, but these models can be expensive to build. 
  • Prioritize AI training to set your team up for success and to protect your intellectual property/data. 

Wed. February 5

Keynote Address: Leading Through Polarization

Bill Doherty, Co-Founder, Bravers Angels 

In a timely keynote address, Doherty explored the nature of polarization, emphasizing that it goes beyond opposing viewpoints to reflect how we feel about one another. It has permeated institutions, making it difficult to remain non-partisan and eroding trust in individuals, institutions, and even facts. Traditional approaches—such as asserting expertise or discrediting trusted sources—fail to rebuild trust.  

Key Takeaways 

• • Polarization is emotional, not just ideological, fostering “othering” and disdain that deepen divisions. 
  • Trust is declining across society, fueled by social media, economic disparity, tribalism, and misinformation. 
  • Simply presenting facts does not build trust, as people interpret them through personal and group filters. 
  • Leaders have the power to either reinforce distrust or encourage connection, shaping the broader discourse. 
  • Successful strategies emphasize relationship-building, including listening with curiosity, affirming common ground, and engaging with humility. 

NHC Member Reactor Panel

Moderator:
Susan Gaffney, Executive Vice President, National Health Council  

Panelists: 
Jorey Berry, President & CEO, Immune Deficiency Foundation  
Kenny Mendez, President & CEO, Asthma and Allergy Foundation of America 
Carol Ostrow, Board Chair, National Psoriasis Foundation  

Following the keynote, three representatives of NHC member organizations participated in a member reactor panel to dive deeper into the topics presented by Doherty. The panelists discussed how the current environment is creating significant challenges, with rising fear, anxiety, and passive aggression that impact both personal and professional spheres. Federal funding, DEI initiatives, nonprofit status, and access to care are all at risk.  

Key Takeaways 

• • The current climate is heightening fear and uncertainty, putting funding, equity efforts, and nonprofit status at risk. 
  • Engaging diverse stakeholders requires a personal approach, emphasizing patient advocacy, science, and strategic leadership. 
  • Organizations are taking a proactive stance, speaking out on key issues, maintaining nonpartisanship, and reinforcing their commitment to service. 
  • Collaboration and learning from peers are key strategies, with increased Board engagement in advocacy efforts. 
  • Stay focused on the mission, and trust that integrity and perseverance will lead to long-term success. 

Prevention and Management: Patients Living with Chronic Diseases

Moderator:  
Omar A. Escontrías, DrPH, MPH, Senior Vice President, Equity, Research and Programs, National Health Council 

Panelists:  
Tara Chico-Jarillo, DrPH, MPH, Interim Executive Director, Health Services Division, Pascua Yaqui Tribe 
Caleb Snead, MPH, Graduate Research Assistant, University of Georgia Institute of Gerontology 

A new NHC Trusted Messenger campaign titled “Advancing Advocacy for Chronic Disease Prevention Management” launched during the conference. This campaign raises awareness about chronic disease risk factors and empowers patients with information about care and preventive measures. Three Trusted Messengers who contributed to the video series joined Escontrías to discuss chronic disease management and prevention in our communities and what can be done to reduce disparities and improve long-term health outcomes.  

Key Takeaways 

• • Community-based programs drive better health outcomes, especially when integrating cultural practices and trusted local leaders. 
  • Bridging gaps in access requires innovative solutions, such as partnering with churches in rural areas to disseminate health information. 
  • Trust is a major barrier to health care engagement, and addressing it starts with listening, understanding, and working with trusted community messengers. 
  • Empowering younger generations is essential for sustainable advocacy, providing leadership opportunities to prepare them for future health challenges. 
  • Advocacy efforts must stay mission-driven, continually reflecting on the “why” behind the work to maintain focus and impact. 

What Lies Ahead: The Regulatory Environment in 2025

Introduction/Moderator: 
Julie Gerberding, President & CEO, Foundation for the National Institutes of Health  

Speakers: 

• Tim Coetzee, President & CEO, National Multiple Sclerosis Society  
• John O’Brien, Chief Executive Officer, National Pharmaceutical Council   

Bad health policy can have unintended consequences, leaving patients behind in an already broken system. As a new administration takes office, regulatory priorities remain uncertain, but key leadership choices within HHS and other agencies will shape future health policies. Panelists discussed concerns around Medicaid erosion, coverage loss, and funding for medical innovation. and highlighted the need for proactive research and policy engagement.  

Key Takeaways 

• • Patient stories matter—sharing real experiences can influence policy decisions. 
  • Diversity in clinical trials is essential to ensuring equitable access to treatments, and making this clear to members of Congress is imperative.  
  • Policy communication must be clear—translate organizational priorities into policymaker-friendly language. 
  • Stay proactive in research to anticipate and respond to regulatory changes. 
  • Collaboration is key—working together strengthens advocacy efforts and impact. 

A Vision for the Future of Health Care

Speaker:  
Walter Harris, MBA, President & CEO, Heartland Whole Health Institute   

Heartland is leading efforts to transform whole-person health care by increasing access, reducing costs, and ensuring equity. Their approach focuses on educating physicians to shift attitudes, emphasizing both medical expertise and compassion to improve patient outcomes. By leveraging technology to reach rural areas and health deserts, Heartland aims to disrupt the current national health care model, particularly in managing chronic conditions. They advocate for smart, outcome-driven innovation, ensuring AI and technology are introduced responsibly. Recognizing the need for both private and public sector collaboration, Heartland is calling for broad participation in shaping the future of health care.  

Key Takeaways 

• • Whole-person health is central—addressing patient needs beyond just medical treatment. 
  • Physician education is key to improving attitudes and increasing access to care. 
  • Technology can bridge health care gaps, especially in underserved rural areas. 
  • AI in health care must be outcomes-driven, not just a business tool. 
  • Collaboration is essential—both private and public sectors must work together for meaningful change. 

The Power of Patient Engagement in Innovation

Gunnar Esiason, Senior Director, Head of Patient Engagement and Patient-Centered Innovation, Blackbird, Raven (RA Ventures) 

Esiason shared his powerful personal journey with Cystic Fibrosis and how clinical trials ultimately saved his life. However, for many patients, clinical trials remain a mystifying and burdensome process, with limited understanding and significant logistical challenges. RA Ventures is working to bridge the gap between patients, caregivers, and the biotech industry, recognizing that misalignment on metrics and patient support hinders trial participation and innovation. A major issue is the “Field of Dreams” problem—simply developing a treatment does not ensure patient participation, leading to lower adoption rates and diminished impact. RA Ventures addresses systemic inequities by increasing compensation for patients in trials and advocating for stronger infrastructure within patient groups to support engagement.  

Key Takeaways 

• • Clinical trials remain inaccessible and burdensome, with patient experiences often overlooked in trial design. 
  • Misalignment between patients and biotech companies—many trials assume patients will participate without considering real barriers. 
  • Financial constraints hinder patient engagement, especially for small biotech firms that struggle to invest in both research and patient outreach. 
  • Doctors may hesitate to refer patients to trials outside their network, further limiting participation. 
  • Addressing patient fatigue is critical, as those who have participated in unsuccessful trials may be hesitant to re-enroll. 

Attendee Show & Tell

In this attendee-favorite session, Lance Barbour (Senior Director, Patient Advocacy, Pfizer) and Sue Peschin (President & CEO, Alliance for Aging Research) hosted NHC members as they spent five minutes enlightening colleagues with success stories, “ah ha” moments, emerging best practices, pitfalls, partner opportunities, and other news to inform and inspire. 10 presenters shared stories, updates, opportunities, and other news from their organization’s work including:  

• • Patient Empowerment Network’s new digital sherpa program to improve health literacy among patients with cancer by providing access to and training on digital technology. 
  • Hydrocephalus Association’s National Partnership for Pediatric to Adult Care Transition Coalition 
  • BIO’s partnership with the patient community to advance PBM reform 
  • National Alliance for Caregiving’s new insights report on state of caregiving in the U.S. coming out this summer 
  • American Foundation for Suicide Prevention’s initiative for construction industry suicide prevention and partnership with construction trade unions and companies.  

Thurs. February 6

Opening Remarks & Conference Reflections

Conference Reflections:  
Louise Vetter, President & CEO, Lupus Foundation of America  
Ashley John, Director, Issue Advocacy, Novartis 

Vetter and John shared their perspectives on the conference. Vetter homed in on the challenges facing the nonprofit sector and the tools and inspiration the conference has provided to navigate challenges. John remarked that the conference reinforces how the broad health care ecosystem can unite and engage to challenge the status quo.  

Lessons from Chief Influencers: The ROI of LinkedIn

Moderator: 
Anthony Shop, Chief Strategy Officer & Co-Founder, Social Driver 

Panelists: 
Charles “Chuck” Henderson, Chief Executive Officer, American Diabetes Association
Steven Taylor, President & CEO, Arthritis Foundation
Kathryn Schubert, President & CEO, Society for Women’s Health Research 

HLC has featured sessions the past two years that helped attendees shift from Chief Executive to Chief Influencer, showing leaders how personal branding can enhance professional impact. This year, a panel of chief executives turned chief influencers shared how LinkedIn has driven real ROI for their organizations—strengthening company culture, securing funding, and advancing policy goals.  

Key Takeaways 

• • LinkedIn is a powerful tool for leaders, driving fundraising, advocacy, and culture-building within organizations. 
  • Authenticity and consistency matter—engagement should mirror real-life leadership, with regular, thoughtful interactions. 
  • Time constraints shouldn’t be a barrier—leaders find small windows (e.g., coffee breaks, travel time) to post and engage effectively. 
  • Invest in staff training to expand impact, equipping employees and board members to become LinkedIn ambassadors. 
  • Focus on engagement over metrics, prioritizing meaningful interactions like thoughtful comments and shares rather than obsessing over numbers. 

Crisis Communications Panel

Moderator: 
Ann Searight Christiano, Founder & Director, Center for Public Interest Communications; Clinical Professor, Department of Public Relations, University of Florida College of Journalism and Communications 

Panelists: 
Barbara Collura, President & CEO, RESOLVE: The National Infertility Association 
Nicole Friedland, President & CEO, National Alopecia Areata Foundation 
Amy Sonderman, Senior Director, Advocacy and Stakeholder Engagement, Pharmacopeia 

Crises present opportunities to drive change, requiring strategic communication, decisive action, and strong leadership. Speakers shared their experiences navigating crises, emphasizing the importance of controlling the narrative, mobilizing communities, and leveraging media engagement to raise awareness and advance advocacy goals. Deliberate choices—such as forming task forces, investing in media training, and preparing clear, data-backed messaging—can help organizations respond effectively. By leaning into strengths, engaging patient voices, and remaining proactive, leaders can turn disruption into meaningful progress. 

Key Takeaways 

• • Control the narrative—define a clear message and stay consistent. 
  • Leverage crises strategically to raise awareness and achieve advocacy goals. 
  • Lead with science and data to build credibility and influence change. 
  • Patient stories are powerful—use them to connect and drive action. 
  • Be media-ready—invest in training, identify strong spokespeople, and commit fully if engaging with the press. 

The Future of Care: Where Medicine, Humanity, and Innovation Meet 

Interviewed by: 
Randy Rutta, Chief Executive Officer, National Health Council 

Guest Speaker: 
Dr. Geeta Nayyar, MD, MBA, Chief Medical Officer, RadiantGraph 

Nayyar discussed the current challenges in health care, including physician burnout, the disconnect between patient and physician experiences, and the growing trust gap in science despite strong doctor-patient relationships. She highlighted how misinformation has worsened public health challenges, drawing parallels between the COVID-19 era and the HIV crisis. Her book, Dead Wrong: Diagnosing and Treating Healthcare’s Misinformation Illness, explores these issues and the evolving role of AI in health care.  

Key Takeaways 

• • Physician and patient experiences are disconnected, impacting the overall quality of care. 
  • Misinformation in health care has been amplified by social media and AI, making public health communication more challenging. 
  • AI in health care is powerful but misunderstood, often framed in extremes rather than its practical benefits. 
  • Public health remains underfunded, despite its critical role in combating misinformation and improving health outcomes. 
  • Health literacy is key to rebuilding trust in science, ensuring patients can navigate health care misinformation effectively.