Privacy dominates debate on health care database

After a lengthy debate centered on patient privacy, the House of Representatives on Wednesday approved a proposal to develop a statewide database of medical, dental and pharmacy claims information aimed at getting a comprehensive view of health care usage, cost and quality.

The measure, which now goes to the Senate, passed largely along party lines, 93 to 46.

Several other states have or are developing similar programs, known as all-payer claims databases. Supporters say information on diseases, treatment, costs and outcomes is a key tool in formulating health policy and improving the care delivery system.

In other states, the databases have been used by employers to design benefit plans that encourage workers to use health care providers who achieve higher quality and lower costs, and by public health officials trying to target high-need areas or prevalent conditions. Some states, including Maine, make information about the price of various procedures available to consumers.

Rep. Betsy Ritter, D-Waterford, the co-chairwoman of the Public Health Committee, said lawmakers have been frustrated by the inability to get reliable data to use for analysis on how health care benefits can be best provided. Insurers, who have backed the concept, have also voiced similar frustrations, she added.

“Decent decisions can never follow anything other than decent data,” Ritter said.

But critics, including some who embraced the goals of the bill, raised concerns during a nearly 4-hour debate about protecting patient privacy and the potential misuse of the data, warning that insurers could steer patients away from health care providers on the basis of cost rather than quality, and consumers could be misled by information if it shows certain providers have worse outcomes but doesn’t account for those who see sicker patients.

Rep. Jason Perillo of Shelton, the ranking Republican on the Public Health Committee, began the debate supporting the proposal, but came to oppose it after failed attempts to amend the bill to limit what personal information is included in the database or to let patients elect to keep their information out.

“Today’s discussion indicated to me that there is an unwillingness in this body and this legislature to inform Connecticut residents that we are taking their personal health information and using it without their knowledge,” he said.

Ritter said the bill would require that data be disclosed in a way that protects individuals’ confidentiality and would have to comply with federal and state privacy laws. The data would be managed by a vendor, and she said breaches don’t happen when data is properly secured and encrypted.

Under the bill, the database would contain medical, dental and pharmacy claims information from sources including insurers, health plan administrators and pharmacy benefit managers. The data would be available to state agencies, insurers, employers, health care providers, consumers, researchers and the health insurance exchange, all of whom could be charged a fee to get it.

The Office of Health Reform and Innovation would be in charge of planning and administering the database. The special adviser to the governor for health care reform, Jeannette DeJesús, would have to secure federal or private funds for the program.

Rep. Dan Carter, R-Bethel, said the bill had laudable goals, such as making it possible to compare heart disease rates in different towns. But he said the database would put the health information of everyone in the state into a central location, raising concerns about what would happen if there were a security breach.

Carter sought to amend the bill to prohibit the information submitted to the database from including any identifiable information about patients except for health insurance identification numbers. He and other Republicans described it as a common-sense approach, but Ritter said doing so would undermine the ability to track patient outcomes, limiting the effectiveness of the database. The amendment was defeated along party lines.

Carter proposed another amendment to require health care providers to give patients notice that their information could be included in the database, and allow patients to opt out. Perillo said that without the amendment, people wouldn’t have the ability to prevent their information from being shared. “And I don’t think that’s acceptable,” he added.

But Ritter said having people opt out would reduce the effectiveness of a database that’s intended to be comprehensive.

“The power and potential of the database is the ability to acquire data across all insurance types, populations in our state,” she said. “The opt out feature would indeed weaken that. The more that opted out the closer it would get to the present system now where we are continually frustrated…about our ability to understand everything that we could about our health care system and the opportunities that we might have to make it stronger and more efficiently.”

That amendment was also voted down, largely along party lines.

Rep. Sean Williams, R-Watertown, said the bill’s goals shouldn’t come at the expense of people’s privacy.

“Human error happens, and I would argue that the most precious privacy right that people have is their right to privacy in health care,” he said. “We can’t look our constituents in the eye and say, ‘Folks, we guarantee you that this information won’t become public.'”

Ritter said the sort of data breaches that occur when a laptop containing private information is stolen would not occur with an all-payer claims database.

“This information is not going to be kept in someone’s personal laptop by a state employee,” she said.


Democrats: 90 yes, 0 no, 9 absent or not voting. Republicans: 3 yes, 46 no, 3 absent or not voting.

Republicans voting yes: John Hetherington of New Canaan, Tony Hwang of Fairfield, Dave Yaccarino of North Haven.