My Data, My Code, My Health

Welcome back to Fun with the CMS/ASTP/ONC RFI!

Today’s Policy: Establish a TEFCA Patient-Developer Credential Full Rec: https://lnkd.in/eAhqWr4Q Voice: Lupus Patient, Open Source Enthusiast & Homelab Hobbyist

Managing Lupus effectively means bringing together scattered health info. As an open source enthusiast with a homelab, I see huge potential in using community-built or self-customized tools to manage my condition, running them locally where I control the data.

The main hurdle is connecting these tools. If I want to use a trusted open source app for my own data, I face per-EHR registration designed for commercial products, not for a self-hosted, personal setup. Discovering where my records even are is another challenge. Ideally, my local tool could programmatically query TEFCA’s Record Locator Service directly, without needing another intermediary service (and another privacy policy, another data use agreement, and another breach liability) just to find my data.

This “TEFCA Patient-Developer Credential” would be a game-changer. It’s a secure way for an individual to authorize their chosen tools, including self-hosted open source ones, to access their own data. It would confirm my identity and personal use intent, allowing my local app to:

Discover my data sources via TEFCA programmatically.
Authenticate and retrieve my data from QHINs or EHR FHIR APIs, bypassing complex commercial registrations.
Do this for non-commercial, individual innovation, free of business-level fees.

With this, I could run that open source health record aggregator or analysis tool in my homelab, combining specialist notes, lab trends, and my symptom journal. The transparency of open source means I understand the tool, and local hosting gives me direct data control.

This is about having the choice to use local, open source tools for managing sensitive health information. It empowers technically inclined patients to leverage the open source ecosystem for their own health. And often, it’s by tinkering in such low-stakes environments to solve our own problems that we gain deep insights. Today’s personal project, born from necessity, can sometimes spark the understanding for tomorrow’s broader innovations. This credential fosters that.

“What health tools would you run locally if this credential existed?