Most people don't know it but there is a multi-billion dollar industry that collects healthcare information, strips it of basic personal identifiers such as name, address and Social Security Number, and then sells it off to researchers, drug developers, marketers and others.

Medical informatics companies, such as Iqvia (IMS Health), Optum, and Symphony Health reap the profits of selling the healthcare data while the people from whom it's collected have no control over how it's used. Nor do they get any compensation for it.

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