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GHIT Notebook

May 27, 2008

By John Pulley

Deven McGraw’s journey from Appalachian coal-mining country to Georgetown University Law Center, the Johns Hopkins University School of Public Health and the health care policy scene in Washington has led her here: a cramped and cluttered 11th-floor office at the Center for Democracy and Technology (CDT).

McGraw paused recently to reflect on why she left the National Partnership for Women and Families, where she had been chief operating officer since 2005.

In her new role as director of CDT’s Health Privacy Project, McGraw will focus on building consensus for a set of national policies, statutes and regulatory guidelines that will ensure the privacy and security of electronic health care data. Embedding those safeguards into the health information technology infrastructure is critical to the success of the country’s emerging electronic health sector, she said.

“This absolutely will not work if we don’t put privacy and security right upfront,” she added. “There are tremendous benefits to be realized by these technologies, and the failure to get this right has enormous costs.”

For McGraw, one example hits close to home. Most of the women in her family have undergone hysterectomies despite no signs of cancer. Better tools might have provided more evidence on which to base those surgeries, McGraw said, given studies that show hysterectomies are performed more often than necessary.

“It makes me wonder whether, if we had better tools for evidence-based decision-making, all of them would have had the procedure,” she said.

Despite IT’s potential to revolutionize the management of health data and improve care, some consumers doubt that the systems will protect their privacy, McGraw said. Studies show that patients often withhold information from health care providers for fear that disclosure will affect their employment status or health care coverage.

“The fact that information is moving more easily and better and via the Internet raises some pretty significant privacy issues that we must resolve in order to really make sure that these systems work,” McGraw said. “If people do not trust that the information they are providing to their health care provider is going to be used only as appropriate or authorized and protected from inappropriate disclosure or use, then we won’t have a system at all.”

McGraw said she does not seek to block health IT but instead advocates capitalizing on technology to improve health. Her role at the Health Privacy Project will include building consensus among stakeholders for adopting policies to manage health IT effectively.

“It doesn’t do us a whole lot of good to sit on the sidelines and just be critical and talk a lot about privacy but not attempt to resolve these issues,” she said. She added that the Health Privacy Project recently came under the purview of CDT, which “has a very good reputation for helping to resolve issues involving information privacy. It is in some ways a perfect marriage.”

Complicating the challenge of governing health IT are “new [systems] on the scene that didn’t exist when we last dealt with the issue of federal privacy and security standards and Congress passed the Health Insurance Portability and Accountability Act.”

Those systems — including health information exchanges and personal health record systems that pull data from far-flung sources — raise questions, she said. For example, “do you need stronger rules to govern this exchange? Or if it’s just [entities covered by HIPAA] exchanging data, is it sufficient to say HIPAA applies to these transactions?”

New policies must also consider technologies that give consumers the ability to determine what goes into a personal health record and what is withheld from other users.

“If you say those entities have to abide by HIPAA, you’ve taken a legal construct that permits use of data without express patient authorization and grafted it onto a business model built on consumer consent and control,” she said. “It’s not quite the right fit.”

Furthermore, what are the consequences of a recent recommendation by the National Committee on Vital and Health Statistics, which suggests that a national health information network should give consumers the ability to control the exchange of discrete components of their health records?

“You can foresee that a number of health care providers would have a great deal of concern about the prospect of incomplete medical records and what they might be held responsible for down the road,” she said.

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