A health privacy initiative has been launched by the Center for Democracy and Technology, which said that 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.
CDT, a Washington, D.C., digital rights and privacy group, announced earlier this week that 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.