04/23/2025
🔒 As a health information professional with nearly two decades in this field, I’m sounding the alarm.
I just read that Robert F. Kennedy Jr. plans to launch a national autism registry using Americans’ private health records — and I’m deeply concerned.
👉 Full article here https://www.msn.com/en-us/health/other/robert-f-kennedy-jr-to-launch-national-autism-registry-using-americans-private-health-records/ar-AA1DpuR8?ocid=msedgntp&pc=U531&cvid=8884fb018ca949eea03e4d2018b316c9&ei=16
For those of us in Health Information Management, this goes beyond headlines — this strikes at the core of everything we stand for: privacy, consent, transparency, and ethical use of data.
📍 I’ve spent 19 years helping providers manage records the right way.
📍 I lead a company built on protecting health data and supporting providers to do the same.
📍 I know firsthand how hard HIM professionals work to earn and keep patient trust.
Let me be clear:
I’m not political. This is not about party lines — it’s about privacy, ethics, and doing what’s right for patients.
This plan raises urgent questions:
Where is the consent?
Who governs the data?
How will patient privacy be protected?
What safeguards exist to prevent harm or misuse?
🛑 Accessing PHI (Protected Health Information) without clear governance and informed consent is not innovation — it’s a breach of trust.
Our industry has an obligation to speak up.
Not because we’re political — but because we are protectors of the patient voice, and this… this feels like it’s happening without one.
To my fellow HIM professionals, AHIMA colleagues, and privacy advocates: we must stay informed, get involved, and push for accountability. This is our wheelhouse — and our responsibility.
Data will be collected from pharmacy chains, lab tests, smartwatches and more
