Meeting Summary

More than 150 patient organization, partners of patient organizations, business representatives, and thought leaders came together in Scottsdale, AZ, Feb. 21 – 23, 2024, 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 visit to the Museum of the West, an Opening Night reception, sunrise yoga, networking breakfast, and a partner network reception. The following is a summary of the topics covered during the 2024 Health Leadership Conference.

Wed., February 21
CEO/Board Sessions

Quality Care and Patient Access: A Panel Discussion with Leaders in Health Insurance

  • Sabrina Corlette, J.D., Research Professor, Center on Health Insurance Reforms, Georgetown University McCourt School of Public Policy
  • Adam Beck, Senior Vice President, Commercial Product & Employer Policy, America’s Health Insurance Programs (AHIP)
  • Leah Howard, President & CEO, National Psoriasis Foundation, and NHC Board Member

Corlette provided an overview of landscape of the health insurance industry in the U.S. and identified current market trends. Beck described how insurance is a changing industry that wants to work with patient organizations on a wide variety of issues including cost-sharing, prior authorization, drug formularies, and more.  Howard described a NPF program with insurers that aimed to determine what challenges they faced when designing plans that worked better for the psoriasis community.

View speaker slides here and here.

NHC Member Organizations as Employers

  • Jacob Brown, Executive Vice President, Lockton Companies

Brown facilitated a dialogue with participants exploring current market trends for health care purchasers and offered tips and hints for how to select and utilize the knowledge and skills of your health insurance broker.

Key takeaways:

  • Know the landscape and how it relates to your business objectives.
  • Align strategic business objectives and total rewards philosophy – stakeholder alignment.
  • Stay informed about competitive compensation and benefits trends and benchmarks.
  • Champion transparency and effective communication regarding total rewards programs to employees.
  • Annual review and evaluation of total rewards programs for effectiveness and relevance to your business objectives.

View speaker slides here.

Senior Staff Session

Non-CEO leaders from NHC patient organization (POs) members met in this pre-conference, roundtable discussion session to discuss what works and what doesn’t in stakeholder engagement while providing their perspectives, feedback, and evaluation of programs and operational activities.

Thurs., February 22
Opening Remarks – Randy Rutta, CEO, National Health Council and Jeff Todd, President and CEO, Prevent Blindness and 2024 Chair of the NHC Board of Directors

Rutta provided an overview of the successes of the NHC and articulated how the organization and the patient community will spark changes in health care elevating from patient centered to patient engaged to patient empowered. The urgency of now is indeed upon us. The people that NHC member organizations represent are ready for a new reality in support of their health. For too many, the status quo is not working. It is incumbent on the NHC and its members to act now to drive change that better reflects patient needs and priorities.

Todd outlined key priorities for the NHC in 2024, including:

  • Harnessing the good and the bad of AI in health care by forming a working group to explore the issue more fully;
  • Ensuring members benefit reputationally from associating with the NHC, which will revise and relaunch the Standards of Excellence;
  • Grow diverse and robust representation in NHC membership; and
  • Address issues that make it never a more dangerous time to be a patient.

The State of the Sector – Keynote Remarks

  • Introduction: Jeff Todd, President and CEO, Prevent Blindness
  • Akilah Watkins, PhD, President and CEO, Independent Sector

Dr. Watkins shared insights from her first year at the helm of Independent Sector (IS), the leading voice for America’s nonprofit community. Her national listening tour gave her a pulse for the opportunities and challenges for nonprofits in the current environment. She shared highlights from the IS 2023 Health of the Sector Report and provided her perspective on the workforce challenges facing nonprofits.

Key takeaways:

  • COVID-19 put the nonprofit sector through many challenges
  • Key Listening Tour findings
    • Workforce issues have been an incredible challenge.
    • Nonprofits are a vital part of the U.S. economy but lack resources to meet their economic needs.
    • People are disengaging from nonprofits – less trusted than in the past.
    • Less nonprofits are engaging in systemic solutions at the policy level.
  • What Independent Sector is doing to address issues:
    • Supporting nonprofit leaders so that they can be the best version of themselves. Reflect the broad diversity and changing demographics of our country.
    • Identifying the need to recognize leadership in others who may not mirror who we are.
    • Looking inside and outward in an ever-changing environment.
    • Growing, retaining, and developing the workforce.
    • Investing in emerging leaders when they are young or in the middle of their careers – the organization is looking for partners to build out strong leadership programs.
    • Reminding leaders of their responsibility to make policymakers aware of the challenges of the nonprofit sectors, as it’s a more robust sector than what most policymakers think.
    • Encouraging giving and making giving accessible for everyone
  • The path ahead is not clear-cut or easy. Together nonprofits are a mighty force, Bold new approaches are needed to change our sector.

Reactor Panel

  • Sue Peschin, President & CEO, Alliance for Aging Research and NHC Board Secretary
  • Donna Cryer, President & CEO, Global Liver Institute
  • Harold Wimmer, President & CEO, American Lung Association and NHC Board Treasurer

NHC member leaders reflected on Dr. Watkin’s keynote remarks. Key takeaways:

  • NHC members had to make a tremendous reinvestment in staff/workforce; it made a positive impact on how organization delivers on mission.
  • NHC members created and enhanced structural changes (hybrid, virtual, flexible work).
  • There are generational differences in what people are looking for in the workplace, and the best idea can come from anyone at any age. Consider developing succession plans for everyone in the organization.
  • Younger people are much more open about mental health issues. People have lives outside of work, and changes in flexibility and trust reflect the changing workforce and environment.
  • Panelists disagreed that policy advocacy has lagged. The NHC is a great place to collaborate on policy advocacy where members can learn from and partner with other NHC members on policy work.
  • How to incorporate DEI in programming? This needs to be implemented and explored more. The NHC could possibly lead an effort on “How to do a DEI audit” for members.
  • Virtual environment has made it easier to engage with members, staff, etc.

NHC members need to coalesce around actions we can do to address mistrust, misinformation, and disinformation

Growing Health Equity Success from the Grassroots

  • Moderator: Gary Puckrein, President & CEO, National Minority Quality Forum, and NHC Board Member
  • Amanda Pears Kelly, Chief Executive Officer, Advocates for Community Health
  • Wendy Armendariz, Chief Executive Officer, Neighborhood Outreach Access to Health (NOAH)
  • Tara McCollum Plese, Chief External Affairs Officer, Arizona Alliance for Community Health Centers (AACHC)

A panel of experts in community-based care offered expertise on how local care models are leading the way for a more equitable and just health care delivery system. With representation from the national, local, and patient perspectives, the audience gained a deeper understanding of the thread that connects national strategy to the individual experience.

Key takeaways:

  • Health centers are connected through the community with a majority of Board members coming from the local community. They must see anyone and everyone who comes through their door regardless of their ability to pay and residency status. Community health centers continue to lead and drive health equity. “It’s one-stop shopping.”
  • Medicaid expansion was critical for health centers. Keeping people healthy on the front end to help manage health is a goal for community health centers.
  • NOAH hires and recruits staff who reflect the community they serve. They are a full-service provider. Half of their visits are telehealth, specifically in the mental health space.
  • How patient organizations can help:
    • Thinking outside the box; identify the synergies where patient organizations and health centers can work together.
    • We can’t do it alone – partnerships are critical. Funding – especially related to workforce shortages – is essential to help deliver care and resources.
    • Community health workers are essential in rural areas.
    • Need more specialty providers that community health center can refer patients to.
  • Communities are building health centers for the next generation of care.

View speaker slides here.

The Future of Health Care

  • Intro: Michael Osso, President & CEO, Crohn’s & Colitis Foundation, and Vice Chair of the NHC Board
  • Sunita Mishra, MD, MBA, Chief Medical Officer, Amazon Health Services, and NHC Board Member

The business model of Amazon is characterized by a relentless focus on the quality of customer experience. As the company turns its attention to the health care market, this focus translates to new and different ways of addressing the needs of patients. Dr. Mishra articulated the company’s vision for its place in the health care market – as a leader and a collaborator.

Key takeaways:

  • Amazon views health care driven by customer obsession:
    • Customers should have choice
    • Increase transparency
    • Everyone deserves continuity of care
  • The company wants to make it easier for patient to:
    • Get care, examples include Amazon Clinic and One Medical.
    • Get medication, one example is Amazon Pharmacy.
    • Get well via their Health Store.
  • Amazon views AI as a tool to help with the good (DEI, access, ID nonadherence and care gaps), but needs to guard against the bad.
  • “We can no longer wait for the system to change. We need to amplify the voices of our patients and their caregivers. Not just to be heard but acted upon.”
  • Patient health outcomes are critically important. Need to raise the urgency of the patient perspective.

View speaker slides here.

The Future is Here – How Can Patient Advocates Ensure Patient Perspectives Inform the Role of Artificial Intelligence in Health Care

  • Intro: Eric Racine, VP & Head of U.S. Public Affairs and Patient Advocacy, Sanofi, and NHC Board Member
  • Randy Rutta, CEO, National Health Council
  • Brian Anderson, Co-Founder CHAI (Coalition for Health AI) and Chief Digital Health Physician, MITRE

There is no conversation about health care these days that does not include AI. Questions about its role and its potential — both good and bad – abound. The NHC has been exploring how our members can make sure there is a place at the table for patient perspectives, as decisions are being made that impact everyone’s health. Dr. Anderson provided important perspective on how the structures of decision-making are shaping up and how patient advocates can explore their role in that framework.

Key takeaways:

  • AI is the science of helping or building computers to think like humans. Machine learning is the kind of AI that enables computers to learn without specific code language so that they learn on their own.
  • The Coalition for Health AI (CHAI) is a new organization started about three years ago by health systems and tech organizations. CHAI believes that a common definition of what is good is needed. Over 1,300 organizations now are members. In January, a formal nonprofit was formed. Next:
    • Coming up with a consensus definition and standards on what good/responsible AI looks like in health.
    • Engage with the patient community, as they need to be at the center of CHAI’s efforts.
    • Partnering with government – launching on March 5 – announcing Board members including two government officials.
    • Develop testing and evaluation framework for metrics to measure the definition/standards.
    • Stand up and support a federated network of assurance labs to validate the models.
    • Set up a portal/website where these report cards will be available publicly.
  • Will need patient advocacy engagement from the beginning. Announced strategic partnership with the NHC, a Call to Action – based on a set of working groups. Learn more about the CHAI workstreams.

Fireside Chat with a MedTech Innovator

  • Intro: Kenny Mendez, President & CEO, Asthma and Allergy Foundation of America, and Immediate Past Chair of the NHC Board
  • Chuck Henderson, Chief Executive Officer, American Diabetes Association, and NHC Board Member
  • Paul Grand, CEO, MedTech Innovator

From online scheduling and electronic health records to health tracker apps and wearables to surgical robots and AI diagnostics – the role of medical technology in the lives of patients is undeniable. Grand pulled back the curtain on innovation in the medical technology space and invited the audience to explore with him how patient perspectives can be elevated in this market to ensure innovation responds to patient needs.

Key takeaways:

  • What’s working well in Med Tech? Things that are reimbursed via public or private insurance. What’s not working well? Anything that is paid out-of-pocket by the consumer.
  • The space is moving fast, but the patient voice is not heard at the right stage of the game. Trying to change that at MedTech Innovator. Patients need to be involved with the companies earlier by getting in touch with the innovation coming down the road.
  • The biggest challenge is that the industry should be talking to the payers about getting involved earlier with MedTech and FDA payment process.

View MedTech Innovator videos here and here

Attendee Show & Tell

In this attendee-favorite session, NHC Board members Lisa Butler and Michele Oshman 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. Topics shared include:

  • How the Arthritis Foundation celebrated their 75th
  • A small patient organization discussed their innovative clinical research network and patient engagement program.
  • A small patient organization shared their success in fundraising and diversification of revenue, including starting a VC fund.
  • A small patient organization CEO shared her story about a major policy challenge the organization has faced due to the volatile political climate.
  • A business and industry member relayed that patient advocacy groups are the unsung heroes of the health care system and collaboration is key.
  • A nonprofit organization discussed how they got the administration to invest in women’s health research.
  • A small patient organization shared how their organization went through a successful rebranding.
  • A patient organization discussed their anniversary and developing a business plan to continue to advance the organization.
  • A patient organization Board member shared the challenges for the 42 million Americans who are not proficient in English and how that impacts their access to health information and care.

Friday, February 23
Opening Remarks

  • Intro: Susan Gaffney, EVP, National Health Council
  • Kim Love, Director, Global Government Affairs, Amgen
  • Calaneet Balas, President & CEO, The ALS Association

Love and Balas reflected on their takeaways from the first day of the Conference, including the topics of elevating our missions, family, and the power of we (empowerment).

Chief Influencer: Nonprofit Leaders Driving the Conversation

  • Intro: Katie Schubert, President & CEO, Society of Women’s Health Research, and NHC Board Member
  • Anthony Shop, Chief Strategy Officer & Co-Founder, Social Driver

Back by popular demand, Shop energized participants with tips and hints for how to lead the conversation in their sectors for maximum organizational influence.

Key takeaways:

  • Faces are the new logos – people trust people.
  • LinkedIn is where the most senior people and decision makers are – 90 million – and is the most credible, trusted social network.
  • Executives personal LinkedIn pages get 8-20 times the engagement of their organization’s accounts.
  • Chief Influencer – able to break through and make a difference – but you have to choose to be a chief influencer. The five pillars of Chief Influencers:
    • Start in the Center – CEOs need to engage with employees and other stakeholders and take the time. Every time you post you should comment or like other posts 10 times.
    • Embrace the Gray – cannot separate the personal and professional like we used to – going to look different for everyone.
    • Share the Stage – bring others along – use tags to expand network and create two-way conversations; organizations need to monitor to amplify how others are talking about an organization.
    • Learn the Lingo – inside your network – people like to hear from you, from outside your network want more value/advice; include tags – use “@” before the name of the person or organization; use hashtags “#” – research what works best for your topic.
    • Go for Growth – don’t focus on what everyone is doing – focus on your priorities and what you want to accomplish.

Attendee Show & Tell

In this attendee favorite session, NHC members Micah Cost and Julie Block 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. Topics shared include:

  • A small patient organization shared their experience using the Delphi research process to explore adult health issues in their patient community.
  • A patient organization leader discussed a convening they hosted with their corporate partners on how to have stronger patient engagement in research.
  • A nonprofit leader shared how they are working to bring the patient experience into the value assessment process.
  • A patient organization leader discussed their patient engagement work and advocacy academy to be better advocates.
  • A patient organization leader shared a project they rolled out for their organization on how to better engage their patient population and researchers.

Member Panel: Leading the Patient Narrative as Thought Leaders

  • Moderator: Omar Escontrías, SVP, Equity, Research & Programs, National Health Council
  • Jorey Berry, President & CEO, Immune Deficiency Foundation, and NHC Board Member
  • Kevin Hagan, President & CEO, PAN Foundation
  • Jason Resendez, President & CEO, National Alliance for Caregiving

Patients tie all NHC members together. This year’s Conference theme, The Urgency of Now: “Think Patient,” provided inspiration for NHC members in engaging and amplifying the patient voice.

Key takeaways:

  • Patients should be consulted when developing organizational strategic work plans and included in conferences and meetings. Use patients as equal partners.
  • Organizations need to be intentional and cognizant about patient engagement – especially if the leader is not a patient or caregiver themselves in their specific patient community.
  • Nothing about us without us – both for patients and for their family caregivers – and their perspective should be embedded at all levels. “Elevate and integrate.”
  • Use data to inform and provide evidence to support policy efforts. Use both quantitative and qualitative data to illustrate your messages.
  • Broad coalitions can look across disease states and home in on co-morbidities to provide a better understanding of what’s happening in the world of the patient.
  • Health equity has refocused patient organization’s work to better target getting resources to communities of color and figure out where the gaps are in the patient community.

The Political Outlook for the 2024 National Election

  • Intro: Schroeder Stribling, President & CEO, Mental Health America, Chair-Elect NHC Board
  • David Wasserman, Senior Editor and Election Analyst, Cook Political Report

Like it or not national politics has a major influence on how the health care system operates in the U.S. Patient advocates need to keep our finger on the pulse of what is happening in Washington – from the White House to Congress and the federal agencies – in order to advance our missions on behalf of the stakeholder communities we serve. In the closing session, Wasserman provided an insider’s view of what to watch over the course of 2024 as we close in on election day in November.

Key Takeaways:

  • This is the election that no one is asking for. In national elections, more “normal people” vote and they dislike the two leading candidates for President.
  • The House race is a game of inches in 2024.
  • In the Senate Republicans are favored to win but candidates matter.
  • Six states will likely decide the election. President Biden needs to win popular vote by more than 4% and third-party candidates could lower Trump’s threshold to 45%.
  • Fun fact: No president has won a second term without having a pet in the White House.

View speaker slides here.

Closing Remarks

Jeff Todd and Randy Rutta provided closing remarks and thanks to attendees for a great Conference. NHC is going to be markedly different. Never been better positioned to advance the needs of patients. See everyone in Ft. Lauderdale, FL, Feb. 4-6, 2025!