Opening Remarks and Conference Objectives
  •  Kenny Mendez, President & CEO, Asthma and Allergy Foundation of America (AAFA)
  •  Randy Rutta, CEO, National Health Council

NHC Board Chair Kenny Mendez and NHC CEO Randy Rutta welcomed attendees to the annual Health Leadership Conference. Mendez outlined his priorities as Board Chair and Rutta reviewed accomplishments the NHC has made against its 2022-2024 Strategic Plan.

Leverage: Innovation at a Tipping Point

Introduction by:
  •  Kenny Mendez, President & CEO, Asthma and Allergy Foundation of America (AAFA)

Keynote Speaker:
  •  John Nosta, Innovation Theorist

This session focused on the shifting roles of the physician, patient, and caregiver in today’s complex health care environment. This exploration on the future of health care enticed participants with the possibilities, while considering the fears that can hold us back from embracing new ways of doing things. John Nosta reviewed three key concepts of innovation: Digitization Leads, Dematerialization, and Demonetization, which are being seen across all areas of health care. We are amid a digital transformational event. GPT (AI) is inevitable and advancing quickly and getting more powerful. GPT and AI is what will push us in new directions with speed and adaptation to speed of change a key to success. Big data is expanding on three fronts at increasing rates – velocity, volume, and variety. A problem is that all data does not make its way to functionality. The ability to assimilate data is key to the success of our society. But there are many barriers to digital transformation. Cost and habit are the two biggest barriers to health care tech innovation. But it’s not just about innovation, it’s about sychronization, or the ability to synchronize multiple innovations. Bottom line: We are in the middle of a digital transformational event. Synchronizing digital transformation and adding adoption and usability to these transformations is critical. Leaders’ successes are tied to their ability to adapt with technology.

View speaker slides here. 

Reactor Panel to Keynote

Moderator:
  •  Steven Taylor, President & CEO, The Arthritis Foundation

Panelists:
  •  Barbara Collura, President & CEO, RESOLVE: The National Infertility Association
  •  Calaneet Balas, President & CEO, ALS Association

This panel of NHC CEO leaders explored key questions arising from John Nosta’s Opening Keynote, including: How is your organization thinking about innovation and technology for your disease area? What are the opportunities, and fears that you observe? Panelists agreed that it is critical that the patient community engage with innovators to direct innovation in ways that meet real patient needs. Increasing access is also a significant barrier. A common struggle for patient organizations is engaging in the future while meeting the needs of today.

Lead: The Patient Advocacy Community’s Role in Assuring Better Access

Introduction by:
  •  Michael Osso, President & CEO at Crohn’s & Colitis Foundation

Speaker:
  •  Kenneth E. Thorpe, Ph.D., Chairman, Partnership to Fight Chronic Disease; Robert W. Woodruff Professor and Chair, Department of Health Policy & Management, Rollins School of Public Health, Emory University

Dr. Thorpe focused on how chronic disease is driving increases in healthcare costs. U.S health care spending is higher than in Europe, driven by higher costs and higher chronic disease prevalence. He asserted that advancing health equity could save trillions in health care costs. Examples included increasing access to primary care by addressing work force shortages, increasing staff diversity, and building on telehealth success during the COVID-19 pandemic. Other policy recommendations from Dr. Thorpe include addressing high out-of-pocket costs, reducing the prevalence of high-deductible health plans, cap or eliminate out-of-pocket costs for chronic disease medicines, and close health disparity gaps. Other barriers to access include formularies, step therapy, prior authorization, and PBMs. Dr. Thorpe encourages the patient community to invest in prevention, make lower out-of-pocket costs a reality, and focus on improved health outcomes across demographics. Collaboration is critical to making these changes a reality.

View speaker slides here. 

Leverage: Current Policy and Advocacy Landscape

Introduction by:
  •  Jeff Todd, President & CEO, Prevent Blindness

Speaker:
  •  Kelly Brantley, Practice Director, Avalere Health

Annual HLC favorite, Kelly Brantley provided her insights on the health policy and political landscape. Brantley conveyed that ACA enrollment is at an all-time high. Medicaid/CHIP are also contributing to record insurance rates, but redeterminations are coming later this spring. She also said there is a huge role for the patient community to support redetermination to make sure people don’t fall through the cracks. Additionally, she shared that the Inflation Reduction Act has three major drug policy reforms: negotiation, inflation rebates, and Part D redesign. The patient community should play a leading role in implementing all of them. For PBM Reform, there is Congressional interest in transparency. The Administration is studying impacts as well. She also said there has been increased attention on behavioral health, though there are persistent policy gaps, such as parity, provider shortages, and equity. She encouraged patient groups to articulate their everyday experiences to influence policymakers. A final recommendation was for patient groups to place more focus on regulatory efforts than Congressional actions given the current political environment.

View speaker slides here. 

Lead: Strengthening the Role of, and Respect for, Patient Generated Data

Introduction by:
  •  Lisa Butler, Executive Director, GBS/CIDP Foundation International

Speakers:
  • William Lawrence, Senior Director, Patient and Provider Associations, Healthcare Solutions, IQVIA
  • David Voccola, Senior Principal & Global Strategy Lead, IQVIA Integrated Health Practice
  • Alexandra Weiss, Director, Nonprofit Strategy, Patient Advocacy, Healthcare Solutions, IQVIA

For over a decade, the tide of progress in human health has steadily shifted towards greater access and influence for patients – especially in the US. The team from NHC member IQVIA led a conversation on how this dynamic moment presents both towering opportunities and unexpected challenges for patient organizations. The team outlined a series of seemingly disparate events that led to this moment of opportunity with patient generated data. According to the IQVIA team, the ability to digitally follow a patient on their care journey is fast becoming a reality in the U.S. Investment is needed in modern real-world data capabilities that make EMR/HER data available. There is a paradigm shift on leveraging patient data for policy change and action. Optimization of electronic health records can help drive innovation forward. As a result of 21^st Century Cures, patients own and can share their data with anyone, but the caveat is that there are for-profit companies that are attempting to get in front of patients before patient groups can leverage their data for their own purposes. All patient groups play a valuable role in capturing data that will help the life sciences industry, payers, and others to better understand treatment and therapies for a particular disease.

View speaker slides here. 

Lead: A Fireside Chat about Progress on Health Equity

Moderator:
  •  LaVarne Burton, President & CEO, American Kidney Fund

Speaker:
  •  Wendy Ellis, Assistant Professor at GWU and Director, Center for Community Resilience at the Milken Institute

The nonprofit health and patient advocacy sector are critical community support elements in the lives of millions of Americans experiencing chronic health conditions. Dr. Wendy Ellis founded and leads the Building Community Resilience (BCR) collaborative which seeks to improve the health of children, families, and communities by fostering engagement between grassroots community services and public and private systems to develop a protective buffer against Adverse Childhood Experiences (ACEs) occurring in Adverse Community Environments (ACEs). Dr. Ellis asserted that the causes of health inequities are deep, generational, and institutional. Systems are designed to perpetuate inequities. And the nonprofit advocacy community plays an important role. ZIP codes are indicative of health outcomes and status, and generational stress can also affect health outcomes and add to disparities. Dr. Ellis discussed her truth and equity initiative in Cincinnati, which looked at the health impact of discrimination. She asserts that we can help communities come up with customized solutions by looking at how adversity has defined that community and helping to identify the assets and barriers present in a community. She encouraged patient groups to partner with marginalized communities on critical policy concerns, especially on issues such as child and maternal health, education, early childhood, foster care reform, and reproductive justice.

View video here.
View speaker slides here.

Leverage: Attendees “Show & Tell”

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

  •  Eric Racine, Vice President & US Country Head, Public Affairs & Patient Advocacy, Sanofi

In this attendee favorite session, NHC Board members Leah Howard and Eric Racine hosted NHC members as they spent 5 minutes enlightening colleagues with success stories, “ah ha” moments, emerging best practices, pitfalls, partner opportunities, and other news to inform and inspire. Topics shared include:

• A large patient group has set a 2030 deadline in its strategic plan to speed up research. They have three pillars: research, care services, and advocacy.
• A smaller nonprofit shared that a top priority is passing on rebates at the point of sale to patients. They developed a Patient Pocket Protector coalition to pass rebate-pass through legislation.
• A patient group discussed its ASPECT program that trains people to share their It has had multiple benefits including advocacy, shifting the organization’s culture to be more patient-led, uncovering gaps such as mental health, and helping people advocate for their health.
• A CEO of a patient group recounted how she took the NHC show-and-tell format to their patient summit and called it their Patient Empower Hour, where attendees shared their inspiration.
• Another patient group CEO discussed their “Seize the Awkward” campaign with the Jed Foundation to encourage young people to talk to their friends and families who may be at risk of suicide. The campaign has been shared by important influencers, garnered 60m views online, and met its goal to encourage outreach to those at risk.

Partner Networking Reception

Attendees wrapped up the day by connecting with those they met throughout the day to network and discuss topics of mutual interest.