2020 National Health Council Annual Report
The year 2020 will definitely go down as one of the most eventful in recent history. Through a global pandemic, which heightened recognition of health inequities, a volatile election season, and an organizational leadership change and search, the National Health Council team rose to the challenge to deliver high-value resources, programming, and service to our members.
A Message from the 2020 chair of the NHC board of Directors
Messages from NHC Leadership
Made up of more than 140 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 90% in 2020. We were also able to add nine new members, including:
NHC REDUCES DUES FOR NONPROFIT MEMBERS
In a major step to support our patient advocacy and nonprofit members, the NHC announced in May that starting in 2021 we would offer an optional reduced dues rate for 3 years. Any VHA and nonprofit members are invited to avail themselves of this temporary, 50% reduction with a minimum dues amount of $1,000 through 2023. We consider this our duty and a way to support our members during this difficult time.
CONSENSUS STATEMENT ON HEALTH EQUITY
The NHC and National Minority Quality Forum (NMQF) released our Health Equity Consensus Statement. Chief Executive Officers at 58 of the NHC’s 63 patient advocacy organization members signed on. The Consensus Statement serves as a public commitment to reduce inequities within the health care system. Read the Call to Action, which captures the outcome of a September Roundtable discussion we convened with the NMQF. The consensus statement will serve as the foundation for 2021 activities. Learn more here.
COVID-19 RELATED ACTIVITIES
The NHC team focused on providing information, support, and advocacy on behalf of our members related to COVID-19. This included:
- COVID-19 Issue Page with legislative updates and resources for and from our members.
- Weekly webinars for CEOs and senior staff on topics related to the pandemic and relevant to NHC patient advocacy and nonprofit members.
- Public webinars for patients and caregivers.
- Advocacy and public policy work related to multiple COVID-19 priority areas, resulting in legislation and regulations to improve care for people with chronic conditions and offering financial lifelines to nonprofits.
- Multiple blog posts.
- COVID-19 Policy Digest emails to update our members on recent developments.
- Social media campaigns supporting our patient advocate members and thanking front-line public health workers.
- One-on-one consultations with members.
NEW AFFINITY GROUP FOR MEETING/EVENT PROFESSIONALS
In response to the shift to virtual meetings, the NHC established a new Affinity Group for Meeting, Conference, and Event Professionals employed by our members.
Events
The 2020 National Health Council (NHC) Health Leadership Conference (HLC) was a success, with 104 attendees from 52 organizations coming together to mark 100 years of Putting Patients First and look toward the future. It was our last in-person event of the year due to the COVID-19 pandemic.
We transitioned our annual Science of Patient Engagement Symposium and Washington Representatives Retreat to virtual meetings with record attendance for both.
The 2020 National Health Council Science of Patient Engagement Symposium, Including More Voices: Improving Diversity and Representativeness, brought more than 170 scientists and patient advocates together virtually to exchange ideas and experiences on the role of patient engagement in improving diversity and representativeness and vice versa. Watch highlights from the conference in the video below.
The Washington Representatives Retreat is an opportunity each year to convene public policy and government relations professionals from NHC member organizations to discuss major policy developments and emerging issues, get input on the NHC’s policy priorities, and network with colleagues. While in person networking was missed this year, we recreated the experience through our Lunch with the Experts, breakout rooms, and virtual trivia night with over 100 attendees.
The opening keynote address enlivened and inspired the HLC attendees. Stuart Ellis-Myers took attendees on a deep dive into what it is like to spend 50 years living with anxiety, depression and bipolar while uncontrollably twitching over 30 million times due to Tourette Syndrome.
Resources
- Launched our Patient Engagement Fair-Market Value (FMV) Calculator. The Calculator can be used as a guide to determine compensation for patients, caregivers, and patient groups involved in “patient engagement activities” taking place between patient organizations and/or unaffiliated patients, and private companies.
- Launched an introductory training series on Real-World Data and Real-World Evidence in partnership with the Duke-Margolis Center for Health Policy. Recorded trainings are available on our website and will continue live through April 2021.
Public Policy & Advocacy
- The first FDA PFDD guidance document finalized this past summer reflected the NHC’s advocacy work on patient input in medical-product development.
- Contributed to the Patient-Centered Outcomes Research Institute’s crafting of their Proposed Principles for the Consideration of the Full Range of Outcomes Data, a Congressional requirement based on NHC’s advocacy.
- Ensured COVID legislation included stimulus provisions for nonprofit organizations and public health provisions to help people manage their chronic conditions in the midst of the pandemic.
Education
- Expanded the NHC Center of Educational Excellence.
- Established the NHC Value Classroom, a one-stop-shop for patient advocates engaged in value assessment.
- Hosted a Roundtable and published a white paper on Multi-Criteria Decision Analysis (MCDA) with the National Pharmaceutical Council. MCDA is one promising approach to aggregate the different dimensions of value. As the health care community continues to develop MCDA, it is important that we understand how the patient voice can be best incorporated.
NHC IN THE MEDIA
NHC staff have been interviewed or published in multiple outlets this year, including:
- BMJ ““Industry Funding of Patient And Health Consumer Organisations: Systematic Review With Meta-Analysis” (Marc Boutin, former NHC Chief Executive Officer)
- CNBC “Could Covid-19 be considered a preexisting condition? It’s complicated.” (Eric Gascho, NHC’s Vice President, Policy and Government Affairs)
- Morning Consult “Evolving Methods to Enhance Patient-Centered Value Assessment” (Eleanor M. Perfetto, Ph.D., MS, Executive Vice President, Strategic Initiatives, and Elisabeth M. Oehrlein, Ph.D., MS, Senior Director, Research and Programs)
- PharmaBoardroom (Boutin)
- The Evidence Base “Look Behind The Lecture: The Importance of Patient Engagement Across the Health Care Continuum” (Boutin)
- The Evidence Base “Patient-provided Information For Improving Real-World Evidence”(Oehrlein)
- Value in Health “Defining Patient Engagement in Research: Results of a Systematic Review and Analysis: Report of the ISPOR Patient” (Perfetto, Oehrlein)
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.
