The Case for Informed Consent

Austin, TX — Patient Privacy Rights (PPR), the nation’s leading health privacy watchdog released a white paper entitled, “The Case for Consent: Why it is Critical to Honor What Patients Expect: for Health Care, Health IT and Privacy.” The paper is designed to be a primer on health privacy and argues that the primary stakeholder in health care, the patient, must retain control over their personal health information. The white paper is available online at http://patientprivacyrights.org/wp-content/uploads/2010/08/The-Case-for-Informed-Consent.pdf.

The white paper tackles the arguments made that patient control is too technically difficult, is too expensive, or is too complex, among others. In fact, robust privacy-enhancing technologies are in use now that ensure both progress and privacy. Technology can enable control over personal health information today and likely simplify our systems and lower costs.

“Patients know what they want,” says Patient Privacy Rights’ founder, Deborah Peel, MD. “It is a mistake to design health IT in a paternalistic manner — assuming a corporation, vendor, provider or government agency knows what is best for each individual patient.”

View the white paper: The Case for Informed Consent

Switch To Digital Medical Records Raises Concerns

Watch the Video of these interviews and read the full story HERE.

OAKLAND, Calif. — At his high-rise medical office in Oakland, orthopedic surgeon David Chang recently switched from those familiar but cumbersome paper medical files to digital records, making the change ahead of a federal requirement that goes into effect for all medical providers in 2014.

Chang now has a private company store his patients’ records electronically.

“Not only was it free – which was fantastic – but it saved me time,” said Chang.

That company is Practice Fusion in San Francisco. It’s part of a booming industry in electronic medical records software. Its service is free to some 30,000 doctors. KTVU discovered the reason the service is free is because the company legally sells the patient medical information it collects. Buyers include drug companies, medical insurers and others. They can get it if they say it’s for research…

…Some were opposed to such wholesale distribution of patient information.

“This is a nightmare. This is a nightmare. It’s nothing we’ve ever seen before in medicine,” said patient privacy rights advocate Dr. Deborah Peel.

Peel she said many patients and doctors don’t know the federal government quietly eliminated patients’ privacy rights for electronic records.

“It’s a free-for-all. It’s the wild west,” said Peel…

…Dr. Peel said new technology, for as little as five dollars a year, could protect your privacy and allow you to opt out of research databases. Privacy advocates said concerned patients need to lobby their lawmakers now.

PPR impressed with HHS’ privacy approach

Secretary of Health and Human Services (HHS), the Director of the Office of Civil Rights (OCR), and the National Coordinator for HIT all made very strong, pro-privacy statements at the press conference today announcing the Notice of Proposed Rulemaking (NPRM) titled: 45 CFR Parts 160 and 164, RIN: 0991-AB57, Modifications to the HIPAA Privacy, Security, and Enforcement Rules under the Health Information Technology for Economic and Clinical Health Act.

Signaling a major shift in direction for the Administration and HHS’ Secretary Sebelius said “It’s important to understand this announcement of the NPRM…. is part of an Administration-wide commitment to make sure no one has access to your personal information unless you want them to.”

Patient Privacy Rights heartily congratulates the Administration and Sec. Sebelius for this new pro-privacy, patient-centered approach to personal health information (PHI).

We applaud Secretary Sebelius’ clear acknowledgment that health IT systems should empower patients to control PHI. Putting patients in control of PHI is the only route to prevent wasting billions in stimulus funds on HIT systems that destroy privacy and to stop the theft, misuse, and sale of PHI in today’s primitive HIT systems and data exchanges.

During her remarks, OCR Director Verdugo said, “the benefits of HIT will only be fully realized if health information is kept private and secure at all times.”

And finally Dr. Blumenthal stated, “we want to make sure it is possible for patients to have maximal control over PHI.” He also referred to the Consumer Choices Technology Hearing last week, which demonstrated consent tools that enable patients to control the use and disclosure of their health information from EHRs and for HIE.

Hopefully the NPRM actually gives Americans the control over access to personal information Secretary Sebelius said the Administration is committed to. We are analyzing the 234 page Notice of Proposed Rulemaking (NPRM), and will post our comments on the NPRM as soon as we can.

Below see the Press Conference announcing the Proposed Rule.

HHS pitches new patient privacy safeguards

A new rule proposed today would add substantial protections to the Health Insurance Portability and Accountability Act (HIPAA) for individuals who want to make sure their personal health information remains private and under their control, something that’s considered vital to the eventual success of electronic health record deployments.

Health and Human Services Secretary Kathleen Sebelius acknowledged as much in announcing the rule, saying that, while health IT will help to move the American health system forward, “the privacy and security of personal health data is at the core of all of our work.”

The proposed rule, which will be open to a 60-day comment period starting July 14, takes various routes to providing patient control…

…First reactions to the proposal were generally positive. Deborah Peel, founder and chair of the Patient Privacy Rights organization and an often fierce critic of the government’s record on privacy rights, said she was impressed with Sibelius’s remarks.

“We applaud her for recognizing that HHS should build what the public expects: health IT systems that empower patient control over personal health information,” she said.

HHS’ Health Privacy Site

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

Exploring Privacy: An FTC Roundtable Discussion

The Federal Trade Commission will hosted a series of day-long public roundtable discussions to explore the privacy challenges posed by the vast array of 21st century technology and business practices that collect and use consumer data. Such practices include social networking, cloud computing, online behavioral advertising, mobile marketing, and the collection and use of information by retailers, data brokers, third-party applications, and other diverse businesses. The goal of the roundtables is to determine how best to protect consumer privacy while supporting beneficial uses of the information and technological innovation.

Dr. Deborah Peel, founder and chair of Patient Privacy Rights, was part of the second session.

Read the transcript of Dr. Peel’s session here

Watch the video of all sessions here

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.