Do you think that the information (electronic medical record or EMR) you provide to your doctor or healthcare provider should be sold to a private company to be used for private profit?
Medical-record software companies are selling your health data
Sheryl Spithoff, Feb. 20, 2019
…One of the companies [IMS Brogan, Privacy Analytics all owned by IQVIA] that sells and supports EMR software in primary care practices in Ontario is also selling health data on the side. The company anonymizes the data — strips names and other identifying information from the health records — and then sells it to IQVIA, a U.S.-based health data giant. IQVIA describes the process but does not name the EMR company selling the data in its promotional documents.
…This practice, however, raises several concerns, including the risk of re-identification of individuals in the anonymized data and the lack of active monitoring by a regulator. It is also concerning that this resource could be used for public good — for example, determining the prevalence of depression in certain patient groups — and is instead captured for private gain.
Anonymized data vs Reidentification
If there are enough traits and unusual diagnosis or other facts you could be identified. For example a study about substance use and gender might identify an individual based on living in a small town, age 35, bipolar type 1 and one arm.
There is no active monitoring of the EMR companies that gather, de-identify and sell data, or of the company that buys and links the data in Ontario. OntarioMD does not provide oversight or conduct audits. The EMR companies have to sign-off agreeing to privacy standards but then after that it is based on trust.