States Review Rules After Patients Identified via Health Records

To view the full article, please visit States Review Rules After Patients Identified via Health Records.

Key Quotes from the Article:

  • -“Some U.S. states are reviewing their policies around the collection and sale of health information to ensure that some patients can’t be identified in publicly available databases of hospital records.”
  • -Bloomberg News, working with Harvard University professor Latanya Sweeney, reported on June 4 that some patients of Washington hospitals could be identified by name and have their conditions and procedures exposed when a database sold by the state for $50 is combined with news articles and other public information.
  • -The state probes are focused on whether privacy standards for health information should be tightened as data-mining technologies get more sophisticated and U.S. President Barack Obama’s health-care overhaul drives rapid growth in the amount of patient data being generated and shared.
  • -Sweeney’s goal of identifying patients is to show that threats to privacy exist in datasets that are widely distributed and fall outside HIPAA’s regulations.

Harvard’s Data Privacy Lab Launching HRB

We are proud that one of our Board of Directors of Patient Privacy Rights, Latanya Sweeney, PhD, is leading this major project that puts patients in control of the collection and use of sensitive personal health information in a very secure ‘health bank’. No information can be disclosed without the patient’s informed consent.

Link to Harvard’s Data Privacy Lab
Link to Article in Healthcare IT News

Health banks can enable health information to exchange data for treatment and other uses WHEN patients say so, instead of the way today’s electronic systems operate: millions of employees of “covered entities” like hospitals and hospital chains, clinics, doctor’s offices, health plans, and health clearinghouses decide when to use, sell, or disclose patients’ health information for a myriad of reasons without obtaining informed patient consent or giving advance notice.

Today, Americans have no idea which parts of their sensitive personal health data is being disclosed to whom or for what purposes. Moving to a health banking system would put patients back in charge of records, not corporate and government users, or researchers.

PPR is working with Professor Sweeney and her lab on a complementary project to map where health data flows. Patients cannot weigh the risks of using electronic health systems without knowing where their data goes and who is using it. Professor Sweeney will unveil the PPR/Harvard Data Privacy Lab Health Data Map on June 6th in DC at the 2nd International Summit on the Future of Health Privacy. Registration to attend or watch via live-streamed video is free.

2012 Health Privacy Summit – SAVE THE DATE!

June 6-7th, 2012
2nd International Summit on the
Future of Health Privacy
Georgetown Law Center, Washington, DC

Patient Privacy Rights is happy to announce the 2nd International Summit on the Future of Health Privacy will be held June 6-7th, 2012 at the Georgetown Law Center in Washington, DC. If you would like to receive a notice when registration is officially open, please sign up to receive updates.

Patient Privacy Rights is very excited to be working with these remarkable academic institutions & partners for the 2012 Health Privacy Summit:

The Machinery Behind Health-Care Reform

Robert O’Harrow tells the story of how Harvard, Harvard Partners HealthCare, Blackford Middleton, and the Health Information and Management Systems Society (HIMSS), the health IT industry’s lobby, got $27B for HIT into the stimulus bill.

HIMSS used classic industry lobbying strategy:
1. Never let a crisis go to waste (in this case the economic crisis) to drive funding for industry.
  1. a. They were very clever because

  • i. The HIT industry was NOT failing (unlike the auto industry) and did not need a stimulus

2. Fund a ‘think tank’ to produce ‘research’ promoting HIT as a way to lower costs, improve healthcare, etc., etc.—in this case headed by Blackford Middleton MD of Harvard.
3. Use the ‘research’ to promote HIT and lobby for stimulus funds.
-Harvard-branded  ‘research’ is very powerful:
  1. b. Non-profit organizations were funded “
  2. to press for electronic health records”

  3. c. Blumenthal, Daschle, and the Obama Administration were ‘sold’ on the ‘research’.
  4. d. The ‘research’ gave Blumenthal, Daschle, and the Obama Administration a way to justify dismissing the problems OMB and other sceptics raised about the ‘research’
  • iii. Mark Frisse and Joseph Antos are sceptics quoted about the ‘research’.
  1. e. Congress was ‘sold’ on the ‘research’ which claims that HIT will reduce costs, etc.
4. HIMSS and the Harvard ‘think tank’ draft much of HITECH’s plan to purchase flawed HIT systems.
5. Congress passed the stimulus bill with $2B more for HIT than the $25B HIMSS recommended
6. Industry wins.
7. Public loses.
  1. f. The public’s expectations and rights of control over health information are eliminated by funding flawed HIT/EHRs and data exchanges.

The result almost 4 years later is we have no idea where our health data is held, who is using it or why—no health data map, no ‘chain of custody’ for where our data flows, no way to control health data in electronic systems or data exchanges, and no way to stop data sales (a recent example is Medtronics selling records from patients’ wireless heart monitors).

Soon, we will finally be able to download electronic copies of our health data, a crucial first step to restoring control over our own information. Once we have all our health information, then we can press to restore control over whi can see, use or sell it.
To view the full article, please visit: The Machinery Behind Health-Care Reform