What Do You Mean I Don't Own My Own Medical Data?

October 1, 2005 -- That's right. You don't.

Who does? Usually, the hospital, clinic, or doctor who created the data.

In other words, not you.

Here is an excerpt from Physician's News Digest, 3/1999:

Underlying the entire health care informatics industry is the basic issue of who owns data and how data may be used by others. There is limited public law on this question and parties almost invariably address the issue as a matter of private agreement. Generally, the law in most states gives ownership of the medical and business records to the provider who creates the records, subject to a general duty of confidentiality and in some states a right of access for patients to their own records.
These issues are partly addressed by the Federal law known as HIPAA, the Health Insurance Portability and Accountability Act of 1996. It says that you have these five rights regarding your medical records:

  1. An unconditional right to be informed of the data-handling practices of medical practitioners and providers;

  2. The right to request, but not necessarily to always obtain completely, the privacy protection of your healthcare information;

  3. The right to review and copy your medical record;

  4. The right to request that inaccuracies in your record be corrected; and

  5. The right to know who has accessed your medical records in the past.

The text of the HIPAA law can be found at the US Department of Health and Human Services.

It does not actually discuss ownership of medical data, only access to it and control of it. Decisions about ownership are left to the states.

Kate Jackson writes in Whose Medical Record Is It, Anyway? in For the Record magazine:

It may vary somewhat by state law, but the healthcare record is owned by the healthcare provider that created it... [You] generally have the right to see and request a copy of [your] entire medical record. The exceptions to that rule are records pertaining to psychiatric conditions, HIV status, and mental health care... [complete list] most states consider psychiatric records to be "hyperconfidential".
And they can charge you for making the photocopy... of their data.

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