Privacy desires ignored

For psychiatrist Deborah Peel, maybe patient privacy and patient consent aren’t identical twins, but they’re sure close relatives.

Not surprisingly, a recent Zogby International poll commissioned by Peel’s not-for-profit Patient Privacy Rights Foundation, Austin, Texas, focuses on patient consent and its relationship to privacy—a unity the federal government has chosen to either ignore or deny.

The 2,000 adult poll respondents reached by Zogby via the Internet put great store in their right to privacy. They cling to the quaint notion that they should be asked before their electronic health records are sent skittering off to unknown users for unknown purposes. See full poll results here.

Silly them.

HHS rulemakers wrote away a key right to privacy eight years ago.

An HHS revision to the Health Insurance Portability and Accountability Act privacy rule in 2002 stripped away one of the broader authorities giving patients the right to control the flow of their medical information. HHS rulemakers did it by eliminating the right of consent. They took a stringent privacy protection rule and transformed it into a disclosure rule.

There are a lot of bright folks who have warned HHS that this privacy issue broadly—and this HIPAA privacy rule revision, specifically—are going to explode on the healthcare industry. One of the more insistent voices has been Peel’s, but she by no means alone.

Majority of Americans want personal control of health information

It’s hard to get Americans to agree on much these days, but overwhelming majorities seem to want control over their own electronic health information.

A poll from Dr. Deborah Peel’s Patient Privacy Rights Foundation and Zogby International found that 97 percent of the more than 2,000 U.S. adults surveyed believe that hospitals, physicians, laboratories and IT vendors should not be allowed to sell or share “sensitive health information” without consent. Ninety-eight percent are opposed to health insurance companies marketing personal health information, according to the survey.

See full poll results here.

Americans Want to Control Their Health Information

Health privacy watchdog Patient Privacy Rights and Zogby International surveyed 2,000 people, and found that almost all object to doctors, hospitals, and insurance companies sharing or selling their information without their consent. An overwhelming majority also wants to decide not only which companies and government agencies can access their electronic health records, but which individuals.

See the Survey Results

Hospitals and doctors are currently busy implementing the first stage of requirements under the HITECH Act, which calls for providing patients within the next two years with an electronic copy of their physical, test results, and medications. Ultimately, patients should be able to access their electronic health record online.

Poll: Huge majorities want control over health info

AUSTIN, TX – Patient Privacy Rights, the health privacy watchdog, has enlisted the help of Zogby International to conduct an online survey of more than 2,000 adults to identify their views on privacy, access to health information, and healthcare IT. The results were overwhelmingly in favor of individual choice and control over personal health information.

View the full poll results here.

Ninety-seven percent of Americans believe that doctors, hospitals, labs and health technology systems should not be allowed to share or sell their sensitive health information without consent.

The poll also found strong opposition to insurance companies gaining access to electronic health records without permission. Ninety-eight percent of respondents opposed payers sharing or selling health information without consent.

“No matter how you look at it, Americans want to control their own private health information,” said Deborah Peel, MD, founder of Patient Privacy Rights. “We asked the question, ‘If you have health records in electronic systems, do YOU want to decide which companies and government agencies can see and use your sensitive data?’ Ninety-three percent said ‘Yes!'”…

…The group advocates a ‘one-stop shop’ website where consumers can set up consent directives or rules to guide the use and disclosure of all or part of their electronic health information; if a request to use or sell health data is not covered by privacy rules, they can be ‘pinged’ via cell phone or e-mailed for informed consent.

Patient Privacy Rights calls this solution the “Do Not Disclose” list – similar to the national “Do Not Call” list. If a patient’s name is on the list, any organization that holds his or her sensitive health information, from prescriptions to DNA, must first explain how that information will be used before being granted permission.

Dr. Peel Testifies before Texas Public Health Committee

On Tuesday, May 11th, 2010 Patient Privacy Rights’ founder and chair testified before the Texas Public Health Committee on Health IT moving forward. Her presentation,“Patient Expectations for Health IT: Control over Health Records Privacy Solutions for HIE” is available here.  The agenda for the hearing is below as well as a link to a video of the hearing. The video provided is in the .ram format, and will play in RealPlayer and other limited mediums.

Video of the Public Health Committee Hearing

View a PDF of our briefing
View a PDF of our presentation
View the additional slides on Data Mining

Hearing Purpose: Determine how the state can best coordinate efforts to streamline health care delivery with health information technology (HIT). Identify areas in state law that affect the adoption and use of HIT. Recommend statutory changes as necessary.

Panels:

A. Overview and Update: Forming Frameworks and Consensus

Mr. Stephen Palmer: Director, Office of e-Health Coordination, Health and Human Services Commission
Mr. Manfred Sternberg: President, Texas Health Service Authority

B. Providers and Stakeholders: Updates and Ideas

Mr. Rob Thomas: CEO of Columbus Community Hospital, TORCH
Dr. Karen Van Wagner: Executive Director, North Texas Specialty Physicians Board Member, Sandlot, LLC
Mr. Ed Marx: CIO of Texas Health Resources
Dr. Robert W. Warren: Pediatric Rheumatologist, Texas Medical Association and the Texas Pediatric Society

C. Privacy Concerns: The Issue of Consent

Dr. Dave Wanser: Visiting Fellow at the LBJ School of Public Affairs at the University of Texas at Austin
Dr. Deborah Peel: Founder and Chair of Patient Privacy Rights

D. Workforce Planning: Future Potential Needs for Texas

Mrs. Sue Biedermann MSHP, RHIA, FAHIMA: Chair, HIM Program, Texas State University
Dr. Jack Smith: Dean of the School of Health Information Science, The University of Texas Health Science Center at Houston


E.
Public Comment

Privacy & Publicity

SXSW 2010 Interactive Festival: Opening Remarks: Privacy & Publicity

Danah Boyd explains in this presentation what privacy is and why it is important in all aspects, but specifically in social networking.

One of the world’s foremost authorities on social networks, Boyd works at Microsoft Research New England and also serves as a Fellow at the Harvard University Berkman Center for Internet and Society. Boyd recently completed her PhD in the School of Information at the University of California-Berkeley.

Facebook setting the standards for Health Care?

No laws forced Facebook to add more consumer control to who sees what — the public did. See story: Facebook privacy revisions ‘sign post’ for healthcare

This is EXACTLY what will happen to the health care system when Americans find out they have NO CONTROL over over who sees, uses, and snoops in their electronic health information.

Patient Privacy Rights’ job is to make sure they learn as fast as possible.

Sign up at www.localhost:8888/pprold for our e-alerts so you can help!

First HIT Policy Committee Meeting on Stripping Privacy Away?

No surprise the new HIT Policy committee is gearing up to eliminate privacy, i.e. patient control over personal health information, using the excuse that the entire nation’s records are needed for biosurveillance and research without informed consent. See the quotes from Drs Calman and Clark. The title of the article says it all: “Committee studies public health, research“.

The committee is dominated by industry appointees who will make sure the policies they come up with grant unfettered government and industry access to Americans’ most sensitive personal data, from prescriptions to DNA.

What they don’t get is they will lose the public’s support and trust if they build a system where everyone’s health records can be data mined for any research purpose. A Westin/Harris IOM poll found only 1% of the public would allow researchers unfettered access to their electronic medical records. The government and the research community are completely at odds with the public’s rights to health privacy.

The reality is millions of Americans already refuse to participate in healthcare systems that harm them because they have no control over their medical records.

HHS noted in the Preamble to the HIPAA Privacy Rule that 600,000 Americans/year avoid early diagnosis and treatment for cancer because treatment records are not private private. Two million people/year with mental illness avoid diagnosis and treatment for the same reason: their records are not private. The Rand Corporation found that 150,000 Iraqi vets refuse treatment for PTSD because their treatment is not private, resulting in the highest rate of suicide in active duty military personnel in 30 years.

Can this commitee face reality when they have severe conflicts of interest and want the use of Americans’ health data?

The lack of privacy drives millions away from healthcare. And the lack of privacy causes suffering and death–bad outcomes.

It looks like patients’ and consumers’ best hope for preserving their health privacy rights in electronic systems may be Gayle Harrell. She may be the only committee member who can face reality.

Consumer Watchdog Calls on Google to Cease Lobbying Effort to Allow Sale of Patient Medical Records

Urges Congress to Adopt Privacy Protections in Economic Stimulus Bill. The non-partisan Consumer Watchdog called on Google today to cease a rumored lobbying effort aimed at allowing the sale of electronic medical records in the current version of the Economic Stimulus legislation.

Consumer Watchdog called on Congress to remove loopholes in the ban on the sale of medical records and include other privacy protections absent from the current bill such as giving patients the right to an audit detailing who had accessed their medical records and how the records were used.

Reportedly Google is pushing for the provisions so it may sell patient medical information to its advertising clients on the new “Google Health” database:https://www.google.com/health/