POLICY & ADVOCACY LEADERSHIP (2024–2025)

Shaping the National Landscape for Responsible, Patient-Centered Health AI

The National Health Council is leading federal policy conversations to ensure AI advances safety, equity, transparency, and patient trust. For technology partners, this work offers early insight into where regulation is headed—and how to align solutions with patient-centered expectations.

Key Federal AI Policy Engagements

NHC urged Congress to embed patient perspectives in health AI, focusing on:

  • Transparent AI decision-making
  • Mitigating algorithmic bias
  • Protecting patient–provider relationships
  • Patient participation in AI governance

NHC called for guardrails on AI-supported plan operations:

  • Fairness in coverage algorithms
  • Transparency in automated utilization management
  • Assurance that AI expands—never reduces—patient access

NHC emphasized:

  • Transparent model updates
  • Requirements for human oversight
  • Patient input across the device lifecycle

NHC’s comment letter urged NIH to:

  • Embed patient partnerships in federal AI research
  • Require transparency for patient-facing AI
  • Prioritize bias mitigation & real-world evidence
  • Support public–private–patient collaboration
  • Expand research on AI for chronic illness & underserved communities

Outcome: These actions establish NHC as a leading voice shaping the ethical, patient-aligned AI ecosystem.

NHC Initiatives Driving the Future of Health AI

A national, multi-sector forum convening leaders across technology, patient advocacy, life sciences, academia, and government to shape a patient-centered Health AI ecosystem. Core focus areas include:

  • Algorithmic fairness
  • Generative AI in care delivery
  • Transparency, safety, and governance
  • Patient-facing AI standards

The AI Affinity Group has featured leaders from Google, CHAI, Pfizer, NAM, Deloitte, PHTI, national patient organizations, and more, including:

  • Margaret Anderson, Deloitte — GenAI 101
  • Danielle Gewurz, Deloitte — GenAI 101
  • Laura Adams, Senior Advisor, National Academy of Medicine — NAM AI Code of Conduct
  • Donna Cryer, Founder and Former CEO, Global Liver Institute — Bias, inequity, and shared decision-making
  • Dr. Helen Burstin, CEO, Council of Medical Specialty Societies (CMSS) — Bias, inequity, and shared decision-making
  • Damon Davis, health equity & data transparency expert — Bias, inequity, and shared decision-making
  • Dr. Brian Anderson, CEO, Coalition for Health AI (CHAI) — National standards and coalition-based governance
  • Lucy Orr-Ewing, Chief of Staff & Head of Policy, CHAI — National standards and coalition-based governance
  • Shaye Mandle, Executive Director, AdvaMed Digital Health Tech — AdvaMed’s AI Principles & importance of data privacy, patient access, and clinician education
  • Dr. Kapil Parakh, Senior Medical Lead, Google — Emerging AI technologies
  • Dr. Diana Pankevich, Global Innovation Policy Lead, Pfizer — Future vision for AI in health care
  • Caroline Pearson, Executive Director, Peterson Health Technology Institute — Evaluating digital health tools with patient-centricity
  • Chelsea Magnant, Director, Brunswick Group — AI x Health Care Communications Best Practices
  • April Dawn Shinske, Chief Communications & Marketing Officer, Marfan Foundation — Showcasing Marfan’s new AI-powered patient engagement tool

Representatives from leading patient organizations shared how their tools help patients navigate health care and engage with AI-enabled resources:

  • Sally Werner, CEO, Cancer Community Support — Patient navigation and digital tools
  • Aicha Diallo, VP of Programs, Patient Empowerment Network — Empowering patients through tech-enabled support
  • Eva Shrader, Senior Director, Scientific Initiatives, PanCAN — AI-driven support for patients and families

Representatives from leading patient organizations, appointed by NHC to leadership roles that prioritize the patient perspective in Health AI development workgroups, shared their experiences serving as advisors in these initiatives.

  • Lilly Stairs, Founder & CEO, Chronic Boss & Patient Authentic
  • Amanda Garzon, Chief Operations Officer, Hydrocephalus Association
  • Laura Simpson, Chief Operating Officer, Autoimmune Association

NHC’s virtual collaboration space offering:

  • Cross-sector discussion channels
  • Resource libraries
  • Event recordings & trend insights
    A go-to hub for staying ahead of governance and design expectations.

Strategic Roles in National AI Governance

  • Founding partner
  • Co-leads Direct-to-Consumer Workgroup
  • Integrates patient voice into national AI standards
  • Shapes evidence expectations for digital health AI
  • Expands patient-centered standards into consumer tech

A cross-sector group including Deloitte, Amazon, Sanofi, Amgen, ALS Association & more
→ Produced NHC Principles for Health AI (2024), now informing standards across the ecosystem.