Public Comment on CMS–0042–NC: Health Technology Ecosystem RFI

Submitted by James Cummings, Health IT Policy Expert & Rare Disease Parent Advocate Prioritize Enforcement with the National Provider Directory

A centralized, verified National Provider Directory (NPD) ensures providers are reachable via FHIR APIs and enforces compliance with interoperability rules. Enforcement—not just enablement—is the true incentive for progress.

Full EHI Access & Patient-Controlled APIs

Patients like me must collect fragmented records manually. CMS must require functional FHIR APIs for complete EHI export, enabling families to build comprehensive longitudinal records.

LLMs Transform Patient Education

Large Language Models (LLMs) like GPT-4 translate complex health data into plain language, helping caregivers become proactive partners in care. These tools reduce knowledge gaps and increase shared decision-making.

Proxy Access Must Be Built In

Caregivers are often the main users of health data. Proxy access must be embedded in interoperability infrastructure to reflect real-world healthcare dynamics, particularly for children and elders.

Rare Disease Communities: Early Adopters

We already use registries, digital tools, and aggregated data out of necessity. CMS should partner with rare disease communities to pilot and refine patient-centric technology solutions.

Policy Recommendations

• Enforce full EHI Export APIs and interoperability compliance

• Complete and fund the National Provider Directory

• Guarantee caregiver/proxy access by default

• Support LLM integration for patient education

• Use rare disease communities as early adopters

• Expand consumer participation in TEFCA and research

• Penalize information blocking across systems
  

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