Comment by zkmon
2 days ago
Nice to see support for Open source. I have seen selling of healthcare data, including medicare and medicaid data to private companies which sliced and diced it and sold to academic and drug research institutions via data marts. ETL jobs would run for months. The data included prescriptions, scans, visits, employee plans etc, for about ~200 millions of American patients. It is anonymized data, but still I always wondered why this was allowed.
HHS publishes clear guidelines for de-identifying healthcare data (PHI). Once it has been properly de-identified (anonymized) it is no longer subject to any special controls. I am aware that some researchers have claimed that it could be theoretically possible to re-identify certain records but so far no one has been able to do so in practice so concerns seem to be overblown.
https://www.hhs.gov/hipaa/for-professionals/special-topics/d...
As for Medicare, only a very limited set of data is publicly available. Larger sets are available to certain contractors and researchers but the access agreements prohibit sale to third parties. So you must have misinterpreted the content or source of the data you saw.
https://www.cms.gov/data-research/cms-data/types-data-files
https://ghdx.healthdata.org/record/united-states-marketscan-...
It shows some medicare data as owned by a private company.
That doesn't look like Medicare data. It comes from Medicare Supplement health plans offered by commercial payers (not a government program).