To view the full article, please visit: A Fraying of the Public/Private Surveillance Partnership
The lack of data security and privacy on the ‘HealthCare.gov’ triggered national outrage.For the first time patient privacy is a national issue.
Healthcare.gov’s serious technology flaws sparked huge privacy fears even though ONLY one piece of health data is collected, “Do you smoke?”.
The public now fears that the US government and the health IT industry don’t protect sensitive personal health data. Rightly so. See:
- NBC 2013: http://www.nbcnews.com/video/nightly-news/53418511/#53418511 (it glitches at 19 seconds: mouse over ‘transcript’ at the screen bottom & video will continue)
But current US health IT systems also enable hidden armies of corporations and government agencies to use sensitive personal health data without patient consent.
If our health data was actually private, how could it be sold on the Internet? Three short videos:
- ABC 2012: http://abcnews.go.com/Health/medical-records-private-abc-news-investigation/story?id=17228986&singlePage=true#.UFKTXVHUF-Y
- NBC 2013: http://www.nbcwashington.com/investigations/Medical-Info-for-Sale-Online-224954762.html
We have no map of all the hidden flows of our health data. See examples mapping the hidden flows of US health data:
o states sell health data: http://thedatamap.org/states.html
o top buyers of health data: http://thedatamap.org/buyers.html
o data breaches reveal who purchased health data: http://thedatamap.org/history.html
o health data is easy to re-identify: http://thedatamap.org/risks.html
The consequences of the lack of patient privacy (control over personal health data) are millions people act to keep health data private:
- Today 40-50 million people/year act to try to keep health data private:
o 37.5 million people every year hide information to try to keep it private
§ November, 2005. National Consumer Health Privacy Survey, California Healthcare Foundation:http://www.chcf.org/publications/2005/11/national-consumer-health-privacy-survey-2005
o Over 5 million every year avoid or delay early diagnosis for cancer, mental illness, or sexually-transmitted diseases
§ 65 Fed. Reg. at 82,779, 65 Fed. Reg. at 82,777, 65 Fed. Reg. at 82,778
Technology can ensure all the benefits and prevent harms. The idea that we must surrender privacy forever to ‘wire’ the healthcare system is false.
Technology should “do no harm” to patients. The cure is to use tough privacy-enhancing technologies.