Patients are not being adequately informed about electronic patient records, says BMA

Patients don’t have enough information about electronic patient records and it is too hard for them to opt-out if they want to, the BMA said today (Monday 1 March 2010).

Following limited local piloting, patients’ summary care records1 are now going to be uploaded to a central database across England. Five Strategic Health Authorities recently announced they were speeding up their plans2. Anyone who does not want to have a Summary Care Record (SCR) has to opt out3 by informing their GP or by completing a form either downloaded from the internet or requested through an ‘0845’ national call centre.4

HiMSS 10: CIO Forum February 28, 2010

Dr. Peel spoke on a panel at the HiMSS 10 CIO Forum starting Sunday, February 27th, 2010. The event is being held in Atlanta, GA at the Omni Hotel. The panel discussion consisted of two other panelists, Dr. Paul Tang and Liz Johnson. Dr. Tang is Vice Chair of the Health Information Technology Policy Committee and Chair of its Meaningful Use Work Group. Ms. Johnson serves on the HIT Standards Committee and is also Vice Chair on the HiMSS Board of Directors.

You can see more here.

Dr. Peel also gave an interview while at the forum. Play this podcast

Privacy experts predict what first CPO will face

Healthcare information technology and privacy advocates generally approve of last week’s announced selection of Joy Pritts, a Georgetown University researcher and lawyer, as the nation’s first chief privacy officer, or CPO, within the Office of the National Coordinator for Health Information Technology.

World Congress Leadership Summit : March 26, 2010

Dr. Deborah Peel will be a panelist at the World Congress 2nd Annual Leadership Summit on HITECH and HIPAA: Compliance Management.

The Details:

When: Friday, March 26, 2010 11:15am-12:00pm EST
Where: Washington, DC
Panel Discussion: Are we implementing a Health Information System the Public Wants? Do we know what patients want?

  • Do patients have a right not to have physicians disclose their health information?
  • Are physicians operating in the best interest of the patient when using patient health information without the patient’s consent?
  • Hear patient advocate position on how to ensure health information technology improves quality of care, reduces costs and can have a positive effect on health care.

Other panelists include Jim C. Pyles and Chris Calabrese with the ACLU.


You can view Power Points and other materials used by PPR in a number of venues, as well as presentations by others advocating patient privacy. Visit our Presentations Page to see more.


Visit our Interview Page to see an archive of interviews Patient Privacy Rights took part in. Here are just a few:

Charting a New Course, September 13, 2009
CBS Sunday Morning covers electronic medical records, and Ashley Katz reminds all that privacy is a must.
Read more and Watch Video

Pushing E-Health Records, April 22, 2009
In this On Point Interview with Tom Ashbrook, Deborah Peel, MD explains that with the benefits of EHRs come the privacy risks.
Read more and listen to this interview

Hospitals consider paper-free records, April 10, 2009
Ashley Katz, in an interview with Marketplace, weighs the efficiency and easy of medical records against the real privacy concerns that lead to discrimination based on health.
Listen to this interview
Read this interview

See more

New privacy rules, old technology creating a lot of headaches

What’s driving people craziest about the big national push to convert to EMRs? Maybe it’s the technology that some people don’t like. Maybe it’s resistance to change. Perhaps it’s the short timeline to implement before the stimulus program starts–Oct. 1 for hospitals, Jan. 1 for physician practices. There’s a lot of uncertainty, too, since the rules for “meaningful use” of EMRs aren’t final yet and are very much subject to change.

All of those are legitimate concerns, but they pale in comparison to the privacy issue.

The American Recovery and Reinvestment Act tightens HIPAA privacy and security rules, though just like the 1996 HIPAA legislation, it leaves many of the details up to the regulators at HHS. The 2002 “treatment, payment and healthcare operations” exception to the privacy rule is disappearing, meaning that healthcare organizations will have to obtain consent before disclosing personally identifiable health data to third parties.

Ethics Debate Over Blood From Newborn Safety Tests

After those tiny blood spots are tested for a list of devastating diseases, some states are storing them for years. Scientists consider the leftover samples a treasure, both to improve newborn screening and to study bigger questions, like which environmental toxins can harm a fetus’ developing heart or which genes trigger childhood cancers.

But seldom are parents asked to consent to such research — most probably do not know it occurs — raising privacy concerns that are shaking up one of public health’s most successful programs. Texas is poised to throw away blood samples from more than 5 million babies to settle a lawsuit from parents angry at what they call secret DNA warehousing. A judge recently dismissed a similar lawsuit in Minnesota.

U.S. Health IT Office Reorganizes

The Office of the National Coordinator for Health Information Technology has reorganized into groups including a Chief Privacy Officer.

The U.S. federal government office which handles the nationwide transition to electronic medical records reorganized into several groups, including creating a Chief Privacy Officer.

The National Coordinator for Health Information Technology’s new organizational structure is designed to more effectively meet the mission outlined by the U.S. American Recovery and Reinvestment Act of 2009 (ARRA). The changes were published in the Federal Register, effective Dec. 1.

Paperless Medicine?

Electronic medical records that follow patients from doctor to doctor. Hospitals with instantaneous online access to lab results and health histories. Disease researchers with a state’s worth of field data at their fingertips. It all hinges on a single question: Can Texas physicians go paperless?

…But even the most ardent supporters acknowledge they face an uphill battle. Consumer rights advocates fear e-records could jeopardize patient privacy. Some health care providers aren’t convinced e-records benefit their practice — or their bottom line. And until recently, the only software on the market was clunky and complicated, fueling doctors’ skepticism.

…“The health and financial information that goes along with being treated in a hospital or a doctor’s office is incredibly valuable,” says Deborah Peel, founder and chair of the Austin-based nonprofit Patient Privacy Rights. “Once your sensitive health information is sold or lost, you can’t ever make that information private again.”