Re: Top 100 – Under Their Influence

This is in response to the article in Modern Healthcare By Andis Robeznieks: “Under their influence, Washington insiders hold sway over our ‘100 Most Influential’ ranking, but real change seems to be coming from elsewhere.”

“The Politics of Privacy” is one of four key areas in Modern Healthcare’s story about the “100 Most Influential People in Healthcare” in 2011. Privacy was highlighted because the expectation to control personal health data is a truly bipartisan, trans-partisan issue.

The historic first-ever summit on the future of health privacy co-sponsored by Patient Privacy Rights (PPR) and the UT LBJ School in June was highlighted (see www.healthprivacysummit.org to watch videos of the sessions).

The story recognizes the crucial importance of PPR’s leadership on building patients’ rights to control use of the most sensitive personal information into the healthcare system up front, so patients will use and trust health IT systems and data exchanges.

Unfortunately, many of the new consumer privacy protections the Obama Administration supported in the stimulus bill (HITECH) are being implemented by federal agencies in ways that do not comply with HITECH and other existing federal regulations.

If industry and key government rule makers continue to ignore the American people’s expectations for control over the use of sensitive personal health data, the stimulus billions will be wasted on systems that can’t be trusted and the tremendous potential benefits health IT can bring to treatment and research may never be realized.

Hospitals Wary of Hackers Seek Insurance from AIG

Bloomberg News aired a segment on the rising threat of electronic health information systems to patient privacy and tapped Jim Pyles, an expert from the first health privacy summit to speak.  He pointed out that the lack of adequate health data security, the ability to breach thousands or millions of records simultaneously, and the value of health data on black market as key causes of the growing number of reported health data breaches.

View the video here.

Synopsis: Doctors and hospitals adopting electronic patient records under a U.S. government program are exploring insurance policies to help cover the costs of medical-data breaches. Data breaches cost U.S. hospitals $12 billion over the past two years, according to a study by the Poneman Institute. Bloomberg’s Megan Hughes reports on “InBusiness with Margaret Brennan.”

Don’t bet on knowing your records’ whereabouts

Joseph Conn with ModernHealthcare.com wrote about the Health Privacy Summit in the IT Everything blog. You can read the full article here: Don’t bet on knowing your records’ whereabouts

“Do you know where your electronic health information is tonight?

Here’s a reader challenge: I’ll pay $10 to the first adult who has had at least five encounters with the private-sector healthcare system in the past 10 years to come up with a complete map of where all his or her electronic health records have traveled, who has seen them and where they are now.

I feel my money is safe in my pocket, and here’s why:

First, I’ve been covering health IT for nearly 11 years, and there is no system I know in this country that can completely track the whereabouts of someone’s electronic health information.

Second, there are no laws or incentives to induce complete tracking of a patient’s records.

And yet, patients ought to have access to just such a record map, according to health IT and privacy experts participating in the first Health Privacy Summit Monday in Washington. The daylong conference was put together by Patient Privacy Rights and the Lyndon B. Johnson School of Public Affairs at the University of Texas, Austin…”

Report from first health care privacy conference

Andy Oram, editor at O’Reilly Media, was also a Rapporteur and part of the Planning Committee for the First International Summit on the Future of Health Privacy.

You can view his recap and thoughts from the Summit here: Report from first health care privacy conference

Strange that a conference on health privacy has never been held before, so I’m told. Privacy in health care is the first topic raised whenever someone talks about electronic health records–and dominates the discussion from then on–or, on the other hand, is dismissed as an overblown concern not worthy of criticism. But today a conference was held on the subject, prepared by Patient Privacy Rights and the University of Texas’s Lyndon B. Johnson School of Public Affairs, and held just a few blocks from the Capitol building at the Georgetown Law Center as a pre-conference to the August Computers, Freedom & Privacy conference.

Press Release for Health Privacy Summit 2011

View as a PDF

FOR IMMEDIATE RELEASE

LBJ School of Public Affairs and Patient Privacy Rights Foundation to Co-Host
Inaugural International Summit on Health Privacy June 13 in Washington, D.C.

“Getting IT Right: Protecting Patient Privacy in a Wired World” to Look at the
Fundamental Role of a Patient’s Right to Privacy in Health Information Technology

AUSTIN, Texas, May 11, 2011 – The Lyndon B. Johnson School of Public Affairs and the Patient Privacy Rights Foundation will co-host the nation’s first public summit to discuss the future of health privacy in the digital age. “Getting IT Right: Protecting Patient Privacy in a Wired World” will be held on June 13, 2011 at the Georgetown Law Center in Washington, D.C. The event is the first in a planned series of forums on this theme and coincides with the creation of the U.S. government’s plan for a new health information technology (HIT) infrastructure, which will collect personal health information. For agenda and registration information, visit: http://www.healthprivacysummit.org/

The summit will be interactive and audience members will be expected to contribute questions to panels and participate in work groups to identify urgent health privacy needs, along with the immediate steps needed to deliver responsible and realistic solutions.

Deborah C. Peel, MD, chair of the board of directors of Patient Privacy Rights, Summit co-host, explained, “The goal of the summit is to create the world’s premier public forum on health privacy issues by uniting a ‘brain trust’ of experts – academics, advocates, government, health care, and those in the technology field – who are willing to work together to ensure health privacy is a center-piece of U.S. health care system reforms. We’re very pleased with the response to the Summit, from panelists and speakers to sponsors, which no doubt speaks to the importance and urgency of these issues today and into the future.”

Whether or not the new HIT infrastructure will afford individuals proper control over the sharing of their personal health information is the key issue that will be addressed. Benedicte Callan, Sid Richardson Fellow of health innovation and policy at the LBJ School, feels that the United States is reaching a crossroads in patient privacy with the creation of the HIT infrastructure.

“Designed well, this digital health information system could be the foundation for a more efficient 21st Century health care system,” said Callan. “It could lower costs, make care more safe and effective while leading to new treatments by benefiting research. But without proper protections built in up front, the HIT system could compromise the fundamental rights of citizens to protect their most sensitive personal health information.”

In summation, “The LBJ School has been preparing leaders for 40 years to help find innovative solutions to the most complex public policy issues and challenges of our modern world,” said Robert Hutchings, Dean of the LBJ School of Public Affairs. “Therefore, we see it as critically important to engage in this issue on every level—local, state, national, international—through research and collaborative partnerships in conferences such as this one. We are especially pleased to join with Patient Privacy Rights and with the other conference participants on working together towards solutions to one of the greatest privacy challenges of our time.”

The Lyndon B. Johnson School of Public Affairs is a graduate component of The University of Texas at Austin. The School’s mission is to develop leaders and innovative ideas that will help our state, the nation and the international community address critical public policy challenges in an ever increasingly interconnected and interdependent world.

Patient Privacy Rights is the nation’s leading health privacy watchdog and leading consumer voice for building ethical, trustworthy HIT systems. For more information, visit: http://patientprivacyrights.org/.

Major sponsors to date include: Microsoft, Jericho Systems, ID Experts, e-MDs, Inc., and Medical Research and Materiel Command, Telemedicine and Advanced Technology Research Center at the U.S. Department of Defense.

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Interview: Protecting patient privacy rights in a wired world

In this podcast, Andy Oram interviews Dr. Deborah Peel of the Patient Privacy Rights Coalition about Getting IT Right: Protecting Patient Privacy Rights in a Wired World, a preconference to be held in conjunction with the illustrious Computers, Freedom, and Privacy conference this year.

Listen to the Interview here

Topics covered in the interview include:

  • The evolution of patient privacy.
  • Weaknesses in the current privacy regime for health care.
  • Goals, structure, and intended outcomes for the conference.
  • A look at featured speakers and attendees, including: Joy Pritts, ONC, Chief Privacy Officer; Jessica Rich, Deputy Director, FTC Bureau of Consumer Protection; Stephania Griffin, VHA Privacy Officer; AZ Senator Nancy Barto, Chairman of the Senate Healthcare and Medical Liability Reform Committee; Stephanie Perrin, Canadian privacy expert; Ross Anderson, Cambridge University, UK; Latanya Sweeney, Harvard, MIT, Carnegie Mellon; Helen Nissenbaum , Professor of Media, Culture and Communication, and Computer Science, New York University; Lee Tien, EFF.

Related links:

Listen to the O’Reilly Interview on Health Privacy Summit with Deborah Peel

“Getting IT Right: Protecting Patient Privacy Rights in a Wired World”

Official Pre-conference for CFP2011

June 13, 2011 Georgetown Law Center Washington, D.C.

“Getting IT Right: Protecting Patient Privacy Rights in a Wired World” is the nation’s first open and inclusive public forum to discuss the future of health privacy in a digital age. The conference will be held June 13, 2011 at the Georgetown Law Center in Washington, D.C. and is the result of a partnership between the Lyndon B. Johnson School of Public Affairs at The University of Texas at Austin and the Patient Privacy Rights Foundation, the premier health privacy advocacy organization in the United States.

You can find the agenda, a list of speakers, and more relevant news on the summit at the official website:www.healthprivacysummit.org.

Register Now: www.healthprivacysummit.org/registration