2022 National Health Council Annual Report

For the National Health Council (NHC), 2022 saw the implementation of the first year of our new Strategic Plan and continued change at the organization and for our members. We began to transition back to in-person meetings and events after more than two and a half years of a pandemic. The NHC also moved into new offices, with expanded hybrid meeting capabilities that are available for use by NHC members as a benefit! Through the changes and challenges, the NHC team delivered high-value resources, programming, and service to our members.

Message from Leadership

Through continued change and recalibration, the NHC and its members successfully promoted putting patients first in decisions affecting their health. We celebrated meeting in-person again, convening in accordance with pandemic guidelines for our annual Health Leadership Conference, Washington Representatives Retreat, and Annual Membership Meeting. Though, Zoom and hybrid meetings and events were plentiful and productive.

Throughout 2022, the National Health Council delivered engaging and educational programming to serve its membership in collectively advancing increased access to affordable, high-value, sustainable, and equitable health care.

One of the most notable accomplishments of 2022 was the launch of a new three-year Strategic Plan, dedicated to optimizing patient health, prioritizing health equity, promoting patient engagement, and supporting patient groups in their success. As this Annual Report documents, the NHC is already well on its way to achieving the goals of this new Strategic Plan.

The NHC continued to build upon its Health Equity work by collaborating with our members and other thought leaders in a variety of ways.

  • We released a set of Health Equity Policy Proposals through a briefing to Congress, the media, and NHC members and partners.
  • We advocated for the federal government to improve and increase the use of special billing codes to track and identify the social needs of patients, consistent with our Policy Proposals.
  • We continued engagement with our members, Congress, and the FDA on advancing diversity in clinical trials, specifically, advocating for the inclusion of significant advances in FDA guidance and oversight of diversity in clinical trials in House-passed user fee legislation.
  • We released a DEI report on how NHC members can implement DEI efforts in their organizations.
  • And we developed an overarching framework to advance health equity and NHC health policy priorities through research.

The NHC held more than 270 in-person and virtual events that included nearly 5,000 attendees.

As we continue our journey implementing our Strategic Plan, the NHC team and our member organizations are poised to make lasting progress to ensure the health care ecosystem meets the needs of the more than 160 million people with chronic diseases and disabilities and their family caregivers.

We thank you for your continued support and engagement.

LaVarne Burton
2022 NHC Board Chair
President & CEO
American Kidney Fund

Randall Rutta
NHC Chief Executive Officer

Made up of more than 150 national health- related organizations and businesses, the NHC’s core membership includes the nation’s leading patient organizations. Other members include health-related associations and nonprofit organizations including the provider, research, and family caregiver communities; and businesses representing biopharmaceutical, device, diagnostic, generic drug, and payer organizations.

The NHC maintained a long-standing member retention rate of over 92% in 2022 and added 16 new members in 4 membership categories. New members included:

In the Voluntary Health Agency Category:

In the Professional and Membership Association Category:

In the Nonprofit Organization with an Interest in Health Category:

In the Business and Industry Category:

Strategic Plan Launched

The NHC embarked on the first year of a new three-year Strategic Plan in 2022. Key pillars of the 2022-2024 Strategic Plan include:

  • Advance health ecosystem policy reforms to optimize patient health.
  • Support patient-centricity in decisions affecting patient health.
  • Prioritize health equity across the health ecosystem.
  • Amplify patient group impact in the health ecosystem.

Build the NHC’s capacity to best achieve its mission and vision.

Specifics on the NHC’s execution against the Strategic Plan are outlined throughout this annual report.

Prioritizing and Advancing Health Equity

The NHC continued to build upon its health equity work in 2022 in the following ways:

  • Released the NHC’s Health Equity Policy Proposals through a briefing to Congress, media, and NHC members and partners.

  • Advocated for the federal government to improve and increase the use of “Z codes” to track and identify social needs of patients, consistent with the NHC’s Policy Proposals.

  • CEO Randall Rutta moderated a panel at BIO International Conference with global patient advocacy leaders on areas of overlap and opportunity with the common goal of putting patients at the center of health care decision-making.

  • Spoke, served on advisory committees, or served as a thought leader by partners such as the Multi Regional Trial Center, the Association of Managed Care Pharmacists, the National Hemophilia Foundation, the Amputee Coalition and others.

  • Continued engagement with NHC members, Congress, and FDA on advancing diversity in clinical trials.
      • Specifically, the NHC successfully advocated for inclusion of significant advances in FDA guidance and oversight of diversity in clinical trials in House-passed user fee legislation.
      • The NHC also provided input to proposed FDA guidance on clinical trial diversity focused on increasing patient and community engagement in the process.
    • Released DEI report based on fall webinar on how NHC members can implement DEI efforts in their organizations.

    • Developed an overarching framework to advance health equity and NHC health policy priorities through research.

MEETINGS & EVENTS​

  • Gathered more than 120 VHA and nonprofit leaders and Board members in person at the annual Health Leadership Conference in Coral Gables, FL, to exchange best practices and learn from leading experts in the health policy and association fields.

  • Hosted the 2022 Science of Patient Engagement Symposium, with a theme centered on health equity, From Research to Action: Health Equity for All. The programming drew close to 140 members and provided an opportunity for research leaders to share their experiences, accomplishments, best practices, and resulting translational impacts on the science of patient engagement.

  • For the first time since the start of the COVID-19 pandemic, the NHC’s annual Washington Representatives Retreat was held in-person in Annapolis, MD. This annual event provides an opportunity for NHC nonprofit members to convene and discuss major health policy developments, hear from prominent speakers, provide input in developing the NHC’s public policy priorities, and network with other public policy and government relations professionals from patient group and nonprofit organizations. After the 2021 virtual retreat, there was high demand to gather in-person with a record turnout of more than 100 participants.

  • The 2022 Annual Membership Meeting & Luncheon, which convened more than 100 nonprofit leaders, is an NHC members-only event that provides an opportunity for members to convene, share knowledge, and provide input to advance the health ecosystem. Programming included opportunities to vote on nominations for the NHC Board of Directors and hear from a dynamic and timely keynote speaker and NHC’s CEO and Board Leaders on organizational priorities.

  • The NHC hosted additional opportunities for NHC members to expand their learning, cultivate connections, and create space for discussions with the broader health nonprofit community through participation in our Affinity Groups, policy Action Teams, webinars and meetings, and ad-hoc briefings.

New in 2022! NHC Becomes CAE Approved Provider

In 2022, the National Health Council became a CAE Approved Provider. Many NHC programs meet the requirements for fulfilling the professional development requirements to earn or maintain the American Society for Association Executive’s Certified Association Executive credential. Every program that NHC offers which qualifies for CAE credit will clearly identify the number of CAE credits granted for full participation, and NHC will maintain records of attendee participation in accord with CAE policies. 

Public Policy & Advocacy

In advocacy and public policy, the NHC had several major accomplishments based on our outreach activities:

  • The NHC successfully advocated for fixing the “Family Glitch” through comments and testimony at the July IRS hearing in support of a pending rule to allow lower-income families to access ACA subsidies.

  • Congress extended telehealth flexibilities beyond expiration of PHE to allow for more time to craft permanent policy.

  • The Inflation Reduction Act (IRA):
    • Capped Part D out-of-pocket costs at $2000 and allows beneficiaries to pay in monthly installments.
    • Extended enhanced ACA premium subsidies for 2 additional years.

  • Congress reauthorized FDA user agreements, which included several NHC priorities such as increasing the patient voice in drug development, use of real-world evidence, use of digital tools in clinical trials, and increasing decentralized clinical trials.
  • The FDA released its third Patient-Focused Drug Development Guidance, focused on clinical outcome assessments, which was significantly aligned with NHC’s prior recommendations.

  • The NHC provided 14 template comments for our membership on a wide range of policy issues including clinical trial diversity, CMS payment rules, FTC oversight of PBMs, and access to care and coverage for people enrolled in Medicaid and CHIP.

Growth of the NHC’s Research, Education & Programs Capacity

The NHC welcomed a new lead on our Research, Education & Programs Team, Dr. Omar A. Escontrías, supporting patient centricity by:

  • Launching the Patient Experience Mapping Toolbox (PEMT) during February webinar briefing with NHC members and broad health ecosystem audience; tool dissemination; further implementation plans in progress.

  • Completing the “3 Essential Questions” project on what every patient should ask when engaging with their health care provider. This project also expanded the utility of the Patient Experience Mapping Toolbox (PEMT).

  • Launching Patient Centered-Core Impact Sets (PC-CIS) Blueprint. Awarded a Eugene Washington PCORI grant to develop listening sessions and a Dialogue to solicit feedback on the PC-CIS Blueprint.

  • Embarking on pilot testing of the PC-CIS Blueprint with NHC patient group members. The NHC established a coordinating body in aiding patient groups to pilot and explore funding for disease specific PC-CIS implementation.
  • Launching a research series to inform membership on public health issues pertinent to patients with chronic disease. The first issue titled, Climate Change and Its Impact on Patient Health and the Health Care Ecosystem was published in December 2022.

Member Services

The NHC supported our members through a variety of member services and programming:

  • Hosted webinar series on digital health.

  • Hosted more than 40 member meetings/webinars including Action Teams and Affinity Groups.

  • Hosted two Large VHA meetings, one during Health Leadership Conference to explore meaningful engagement on policy and advocacy issues and a second in July discussing increasing patient access to care and eliminating barriers by engaging relevant sectors of the health ecosystem.

  • Surveyed NHC members on the use and value of current programmatic research and education tools and resources on the NHC website. Results will inform programmatic and research action plan.

  • First membership survey since 2016, solicited feedback from members on key decision areas to ensure the NHC reflects members viewpoints. High-level findings include:
    • Approximately half of respondents indicated openness to increased dues in 2024, though not a full re-instatement of 2020 dues rate.
    • Most respondents indicated finding “great value” in the Standards of Excellence, and support for streamlining and simplification of the Standards process is desirable.
    • Membership categories need clarification.
    • Respondents highly value the policy programming offered by the NHC.

  • Released the 2022 Compensation and Revenue Survey Reports and held a CEO/CFO Briefing on Revenue Survey results. The Compensation Report helps guide our members’ budgeting process for the next fiscal year, by providing market data that more specifically represents the patient advocacy nonprofit “sub-sector.” The Revenue Survey Report presents consolidated revenue for each of the NHC’s patient group member’s national office and all affiliates and/or chapters over a three-year period. Data such as campaign revenue, planned giving, grants, and online giving are collected.

  • In May 2022, the NHC relocated to a new, larger office space at 1730 M St NW, Suite 650 in Washington, DC. Our members can utilize our conference rooms and office spaces as an option when traveling to or doing business in the DC metropolitan area as a member benefit.

  • Partnered with Deloitte Consulting to host a series of one-on-one conversations that would paint a picture of our members’ cybersecurity risks and address questions on building up cyber capabilities with a subsequent webinar to share their knowledge and how it can apply to our members.

Financials

  • The NHC posts its IRS Form 990 on the About the NHC page of our website.
  • The NHC is funded through a combination of member dues, sponsorships, and grants.
  • Over 150 companies, academic institutions and government entities funded NHC activities in 2022.
  • All sponsors are disclosed on our website. Find our 2022 audited financial statement here.