To view the full article written by Bob Brewin for Nextgov, please visit Can computers predict medical problems? VA thinks maybe.
“The Veterans Health Administration plans to test how advanced clinical reasoning and prediction systems can use massive amounts of archived patient data to help improve care, efficiency and health outcomes.”
Two veterans commented on the story below:
- -“total invasion of privacy, I have a big problem with a “vendor” going through my records let alone the VA. the VA doesnt exactly have a good track record of protecting information”
- -“veterans are NO LONGER guinea pigs without express PRIOR written consent, that is MEDICAL DATA covered by HIPAA, and is expressly forbidden to be managed in an open fashion and is NOT for sale.”
Like 99% of Americans, these vets oppose research use of their health information without consent:
- -See Alan Westin’s study of Americans’ attitudes toward research use of health data for the Institute of Medicine (IOM): http://patientprivacyrights.org/media/WestinIOMSrvyRept.pdf?docID=2501. Only 1% of Americans would agree to unfettered access to their electronic health records for research.
US health IT systems and the VA could offer electronic consent to participate in studies:
- -Electronic consent tools can enable each patient to set his or her own broad rules to allow research use of their health data.
- -Vets could be ‘pinged’ for consent for EACH study, set broad rules to allow use of data for all studies, or set their rules for something in between (such as: I will agree to all research use of my data on traumatic brain injury and PTSD, but contact me for consent for all other studies).
Unfortunately the new Omnibus Privacy Rule grants open access to all 300 million citizens’ sensitive health information without consent for any ‘research’ or ‘public health’ use. The broad ‘research loophole’ in HIPAA and the new Omnibus Privacy Rule permits industry (corporations including insurers, employers, drug companies, marketers, pharmacies, labs, and others) to use and sell our personal data for “research” that we would never agree with. ‘Research’ is defined so broadly that:
- -Blue Health Intelligence (a subsidiary of Blue Cross Blue Shield) does ‘research’. It uses and sells enrollees’ health data without consent.
- -IMS Health data mines and sells the nation’s prescription records. Claiming to do ‘research’ allows IMS Health to use and sell Americans’ prescription records without consent.
- -Many electronic health record companies (Cerner, GE Centricity, Greenway, Athena Health, and Practice Fusion) are also ‘research companies’ and sell health data.
- -The ‘research’ industry sells data that is supposedly ‘de-identified’, but health data is easy to re-identify (See paper by Narayanan and Shmatikov:
- http://www.cs.utexas.edu/~shmat/shmat_cacm10.pdf ). And there is no way to know when ‘de-identified’ data is re-identified. Texas law bans re-identification’ of health data, but the system depends on whistleblowers to report violations.
- -Most ‘researchers’ are not physicians, scholars, and PhDs at academic centers, as the public assumes.
Why wouldn’t every corporation that touches health data declare itself a ‘research institution’ so it can collect, use, and sell Americans’ health data? Personal health information is THE MOST valuable data of all, but we have no way to control which corporations collect and use health data. How large a part of the surveillance economy is personal health data?