Privacy needs to be a higher priority as the U.S. government and other groups
push for adoption of health IT as a way to improve the country's health-care
system, said the Center for Democracy
and Technology, which has launched a health privacy initiative.

CDT, a Washington, D.C., digital rights and privacy group, announced Tuesday
it has taken over the Health Privacy Project (HPP), an 11-year-old advocacy
group started by Janlori Goldman, who was also a CDT co-founder. The merged
organization will expand its focus and work on several lingering patient privacy
issues, such as the role of patient consent for information use, enforcement
for privacy lapses and the rights of patients to access their data, said Deven
McGraw, the new director of HPP.

Recent years have seen an increase in adoption of health IT, but "minimal
progress in resolving the privacy issues" associated with electronic health
records, added Leslie Harris, CDT's president and CEO. "We believe we're
at a seminal moment," she said. "We believe privacy can be an enabler
of 21st century health care. The next few years are critical in getting this
right."

CDT has a long history of working on privacy issues and bringing together groups
to work on problems involving privacy and tech issues, she said. "We're
going to apply all of this expertise to resolve some of the key policy questions
that are really vexing us," said McGraw, former chief operating officer
for the National
Partnership for Women and Families.

Among the major issues in health privacy is the role of patient consent, McGraw
said. Some groups have advocated that patient consent be the major way health
information is controlled, but HPP and CDT have concerns that some approaches
could ignore the obligations of health-care providers and other holders of patient
data, she said.

"In my opinion, [consent] puts way too much burden on the individual,
as opposed to putting the right privacy and security structures in place to
ensure patient privacy," McGraw said.

Asked about legislation now before Congress, particularly the Trust
in Health Information Act introduced by three Democrats last month, McGraw
said the bill may be trying to do "too much, too soon" and may have
trouble getting approved. The bill would require holders of patient information
to create safeguards, to notify patients of breaches and to maintain records
of disclosure. The bill would also set several rules for when holders of patient
information can and cannot share the information.

Another group, Patient
Privacy Rights, has endorsed the bill. Patient privacy groups are "making
real progress -- and legislators are listening," said Dr. Deborah Peel,
founder and chairwoman of the group. "This bill puts patients back in control
of their health information and requires many of the privacy principles our
coalition demands. It's refreshing to share good news about Congress."

HPP's Goldman, who's been splitting her time between the group and as a research
scholar at Columbia University, will step aside as the project's director, but
remain as a senior adviser. By working together, HPP and CDT will create a "powerhouse"
organization focused on health privacy, she said.

IDG News Service

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