The biggest myth about “Big Data” users of the entire nation’s health information is that personal health data was acquired legally and ethically.
Just ask anyone you know if they ever agreed to the hidden use and sale of sensitive personal information about their minds and bodies by corporations or “research” businesses for analytics, sales, research or any other use. The answer is “no.”
Americans have very strong individual rights to health information privacy, i.e., to control the use of their most sensitive personal information. If US citizens have any “right to privacy,” that right has always applied to sensitive personal health information. This was very clear for our paper medical records and is embodied in the Hippocratic Oath as the requirement to obtain informed consent before disclosing patient information (with rare exceptions).
The IPO filing by IMS Health Holdings at the SEC exposed the vast number of hidden health data sellers and buyers. Buying, aggregating, and selling the nation’s health data is an “unfair and deceptive” trade practice. (Read more of Dr. Peel’s comments on the IMS filing here.)
Does the public know or expect that IMS (and the 100’s of thousands of other hidden health data mining companies) buys and aggregates sensitive “prescription and promotional” records, “electronic medical records,” “claims data,” and “social media” to create “comprehensive,” “longitudinal” health records on “400 million” patients? Or that IMS buys “proprietary data sourced from over 100,000 data suppliers covering over 780,000 data feeds globally”? Again, the answer is “no.”
Given the massive hidden theft, sale, and misuse of the nation’s health information how can any physician, hospital, or health data holder represent that our personal health data is private, secure, or confidential?