Where We’ve Been: Key Learnings from the Pandemic on Serving the Needs of Patients

• Calaneet Balas, MBA, MS, President & CEO, The ALS Association
• Schroeder Stribling, MSW, President & CEO, Mental Health America
• Gary Puckrein, PhD, President & CEO, National Minority Quality Forum
• Steve Taylor, MBA, President & CEO, Arthritis Foundation

This panel of patient group leaders discussed ways the pandemic caused patient organizations to fundamentally change to address the effects of pandemic-related challenges. While there were many challenges, there were some positive outcomes as a result.

Key Takeaways:

• During the pandemic there was increased isolation for people with already isolating disabilities and chronic conditions, including increased mental health concerns such as anxiety, depression, and alcohol- and drug-related death. It also caused drug supply and access issues and forced the patient community to engage on issues like drug supply chains for the first time. However, it also strengthened communities as we sought new ways to provide services.
• Additionally, new and different kinds of calls for help started coming including:
  
  • More emergency calls from patients and families;
  • More support needed for caregivers;
  • Operations needed to shift to address new issues;
  • Thirst for knowledge about new treatments the public didn’t understand (e.g., monoclonal antibodies); and
  • Additional screening for depression and anxiety
• Going forward, the patient community needs to pressure FDA to keep moving forward to speed access and grow pipelines and reinforce our collective voices to government agencies such as the CDC. We also must ensure funding for science and treat mental health as a preexisting condition. As organizations, we need to keep our nimbleness and engage a more connected, empathetic staff.

Fueling Health System Transformation to Achieve High Quality, Equitable, Innovative, and Affordable Patient-Centric Care

• Elizabeth Fowler, PhD, JD, is the Deputy Administrator and Director of the Center for Medicare and Medicaid Innovation (CMMI) (Presenting Virtually)
• Introduction by LaVarne Burton, President & CEO, American Kidney Fund

Dr. Elizabeth Fowler provided background on CMMI’s establishment – that it was created to test payment models to reduce costs while improving quality. She articulated the Center’s five goals: driving accountable care, advancing health equity, supporting innovation, increasing affordability, and partnering to achieve system transformation. She stressed that CMS is striving for greater transparency by sharing data across the organization. Dr. Fowler also said that CMMI is working to streamline its portfolio, which she described as unnecessary complex with overlapping models.

Key Takeaways:

• Centering health equity – addressing social determinants of health, increasing beneficiaries from underserved communities, bringing in providers such as federally qualified health centers and analyzing new models.
• CMMI is looking for new strategies on patient and stakeholder engagement – topic focused listening sessions, distilling information, etc. She acknowledged that CMMI needs to do more. One attendee suggested CMMI look for forums such as the NHC to partner on patient engagement in addition to the CMMI sponsored roundtables.
• Long COVID-19 may not be ready for a payment model, but CMMI is partnering with other parts of HHS to examine the condition.
• Fowler said she hoped this is the first opportunity for engagement and not the last.
• Fowler suggested attendees check out CMMI’s new website that is easy to read and navigate, and provide feedback to CMMI.

Where We Are Now: Current Policy and Advocacy Landscape

• Kelly Brantley, MPH, Practice Director, Avalere Health
• Introduction by Jeff Todd, President & CEO, Prevent Blindness

Annual HLC favorite, Kelly Brantley, provided an overview of the health policy and political landscape, asserting that “there is always a swirl of health policy, and forces are stronger than ever.”

Key Takeaways:

• The Biden Administration is largely waiting to see what Congress does on a variety of issues such as drug pricing.
• There is strong Democratic agreement across some level of drug pricing priorities.
• Mental health is a heightened priority in the wake of the pandemic.
• Lawmakers face pressure ahead of the 2022 midterms to extend the enhanced ACA Marketplace subsidies.
• The looming end of the public health emergency creates policy pressures on both telehealth and Medicaid.
• Key transparency gaps exist that would benefit patients.
• The health ecosystem needs to make data more meaningful to help patients make decisions.
• The patient advocacy community needs to consider, assess, and engage on public policy that impacts their constituencies.

How NHC Strategic Priorities Inform Clinical Trial Improvement

• Leah Howard, Interim President & CEO, National Psoriasis Foundation
• Lilly Stairs, Board Chair, Autoimmune Association
• Pat Furlong, President & CEO, Patient Project Muscular Dystrophy (PPMD)

This panel of patient group leaders and advocates challenged attendees to consider what the NHC’s role is in patient engagement and recruitment of diverse patients into clinical trials. In the context of psoriasis and clinical trials, one paper looked at 400 dermatological studies between 2010 to 2020 and found that during that decade, the reporting increased for racial/ethnic minorities in the two 5 years cohort (2010-2015, and 2015-2020). However, only 12% of studies on psoriasis represent historically underrepresented racial/ethnic (HURE) patients. Overall, representation of HURE patients is low in clinical trials. For Duchenne, the percentage of recruiting diverse communities is low, especially in the African American community. To alleviate this, PPMD developed a community advisory board to inform diversity in clinical trials. Twenty-four different industry partners and help them with their patient informed consent, and a palliative care team is integrated into the consent process.

Key Takeaways:

• Patient advocacy groups are the table and platform to increase diversity and improve clinical trials.
• Representation matters, not just in the diversity of clinical trials, but also on partnerships and how to bring diverse and communities of color with subject matter expertise to the discussion. Just the word “trial” has negative connotation in marginalized communities.
• To reach rural populations one should:
  
  • Dismantle linguistic barriers and use language that is understood by general audiences.
  • Create remote trials. This way, patients do not travel long distances.
• Focus on reimbursement – do not call it compensation – for trial participation.
• Patient organizations must go out to communities of greatest needs.

The New Reality of Post-Pandemic Work, Workplace and Workforce

• KC Decker, Managing Director – Health Strategy & Analytics, Deloitte Consulting
• Jane Howze, Managing Director, The Alexander Group
• Moderated by Lisa Butler, Executive Director, GBS CIDP Foundation International

This panel of industry experts described how the market for employee recruitment and retention has fundamentally changed during the pandemic, and organizations need to adapt. Issues affecting workers include a decreased work force, which technology has helped, and burnout. Panelists suggested that to retain and increase talent, organizations need to analyze turnover and adapt and figure out what type of employee you want and why. Organizations should also look at unique factors to retain people such as the work environment, flexibility, training, and professional development opportunities.

Key Takeaways:

• Remote work can offer opportunities to recruit in different markets to save organizational resources.
• Be responsive to the specific talent you have and want.
• Develop new methods of management to support flexibility.
• Engage younger people in volunteer boards.
• Charge managers with diversity and hold them accountable.
• Nonprofit advantage is successfully marketing organizational purpose, which is key to attracting top talent.

Emerging Vision for Patient Organization Impact and Growth

• Oved Amitay, PhD, CEO, Solve M.E.
• Michael Osso, President & CEO, Crohn’s and Colitis Foundation
• Cyndi Zagieboylo, MA, President & CEO, National Multiple Sclerosis Society

This panel of leading patient group CEOs discussed the impact the pandemic had on their respective organizations’ impact and growth over the past two years. One organization took a declarative approach to sustaining the vision and mission of the organization post-COVID-19, developing a communication strategy to reach patients through health care providers for consistent messaging. One organization adopted a new area of focus, Long COVID, to its organizational mission. For organizations that developed strategic plans at the onset of COVID-19, the pandemic provided an opportunity to realign focus and engage partners and members on how to achieve that plan.

Key Takeaways:

• For an organization to move forward in the midst of a crisis, groups must carve time out to manage crises and develop strategies on how to best survive as an organization. Often, these challenges are unprecedented but patient group leaders must be ready to tackle any challenges ahead.
• Patient groups must stop working in silos and become collaborative post-COVID-19.
• Patient groups must mine their budgets and deepen engagement of members and those served by the organization.
• Organizations should attend to governance policies as the heart of reputation management for their group.

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.