See the full story at SmartPlanet: The Rising Risk of Electronic Medical Records
This story quotes Lee Tien, Bob Gellman, and me about health information technology, which prevents us from controlling who can see, use, or sell our electronic health data by design—-placing everyone in the nation at risk of job and credit discrimination based on health data. Current technologies make hidden data flow easy, with no way for patients to opt-out or prevent personal data from flowing to an unlimited number of hidden corporate, government, for-profit research and data analytics users.
“Criminals can buy social security numbers online for about $5 each, but medical profiles can fetch $50 or more because they give identity thieves a much more nuanced look into a victim’s life, said Dr. Deborah Peel, founder of the advocacy group Patient Privacy Rights, which researches data breaches and works for tighter security on people’s personal health records.”
Discrimination causes millions to avoid medical treatment every year. It’s a fact of life with paper medical records too. But electronic health systems enable thousands of strangers to simultaneously access the records of millions of patients, so the theft, sale, and misuse of health data for discrimination, fraud, ID theft, and medical ID theft has skyrocketed. In paper records systems, patient files are kept in locked rooms or filing cabinets, making it hard to use or steal more than a few at a time. Anti-discrimination laws alone aren’t effective—we also need to know who has copies of our health data and be able to control who gets them.
““If the information leaked to an employer, it would have affected their jobs or reputations. All the time I’ve been practicing, it’s been a very important and delicate issue,” Peel said. “There are prejudices associated with psychiatric diagnoses. People have powerful reactions to the names of these things.” … Once genetic profiles are routinely added to the mix, access to electronic health data may predetermine who can get jobs or serve in public office, Peel warned… “If the world looked like that,” Peel said, “Lou Gehrig would never get a contract to be a ball player if the team knew he had a disease that would degenerate his muscles, or Ronald Reagan would never get elected president if they knew dementia ran in his family.””
Strong new laws are needed to prevent our health data from being used or sold without consent. We should also have a complete ‘chain of custody’, naming every person and organization that has seen or copied our health information. Without these new legal rights, it’s impossible to decide whether the benefits of using health IT outweigh the risks to our future jobs and opportunities, to our kids’ future jobs and opportunities, and to our grandkids’ and relatives’ future jobs and opportunities.
FYI—HIPAA has NOT protected health data privacy since 2002, it is really a ‘Disclosure’ Rule, not a ‘Privacy’ Rule. See how consent, the right to control who can see and use your health information, was eliminated: http://patientprivacyrights.org/media/The_Elimination_of_Consent.pdf
BOTTOM line: existing technology solutions that enable us to control who sees our records are not required. Instead, the stimulus billions are being used to buy ‘Model T Fords’ that prevent patient control over personal data. Government and corporations (inside and outside healthcare) don’t want to ‘ask first’ before taking our most sensitive personal information.
Help build a map to show where health data flows: Sign up to be a data detective and contribute to mapping the hidden flows of Americans’ health data at: theDataMap.org. A map of health data flow will prove Congress should act NOW to restore personal control over health data.