Who owns the patient data?

When a new medication is developed, pharmaceutical companies conduct a clinical trial: a controlled study of the effect of a medication on selected group of volunteers, perhaps 1000.

Imagine if the benefits and side effects of a new medication could be gauged from not a thousand people but one million of all ages, genders, races and who may or may not already have other diseases complications and may or may not be taking other medications.

One of the benefits of electronic health and medical records is there are vasts amounts of data to be mined and analyzed. Anonymize the patient data and you can create statistics and analysis of the effects of medications, diseases and treatments.

But who owns that patient data? In speaking with a relative of mine who is a physician, he told me that certain very large medical institutions will not release their valuable data for other researchers to use and analyze. They consider that patient data their intellectual property, their treasures.

I posit that the data belongs to the patient, that the patient should be able to control who can access that data even if it is anonymized. The patient, using HIPAA guidelines, should be able to control who has access to his/or her data and not the medical institution.


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