Policy Experts Call for Easier Access to Healthcare Data for Research

Andrew Kitchenman | April 7, 2014 | Health Care
Privacy laws and network of government agencies stifle flow of information that could help improve delivery of medical services in NJ

Joel Cantor, director of the Rutgers Center for State Health Policy, and Linda Schwimmer, vice president of the New Jersey Health Care Quality Institute.
The growing amount of data being collected about New Jersey’s healthcare system could be a vital asset to help solve existing problems and address future needs.
But healthcare researchers are frustrated that state government has been slow to provide information needed to conduct studies and analyze patient behavior.

Dr. Jeffrey Brenner, a leader in coordinating healthcare initiatives in Camden, said legislation is needed to make data more easily accessible to researchers, who can spend years trying to access the information they need. Layers of security protect data, under federal privacy laws, and the fact that data for individual patients is kept by several different state agencies complicates efforts to improve access.

Healthcare researchers are excited about the possible uses of data to help solve a number of intractable problems, such as how to best target healthcare for patients who have chronic conditions.

The benefits and challenges of working with healthcare data in New Jersey was the subject of a panel discussion on April 4 at Princeton University’s Woodrow Wilson School of Public and International Affairs.

Researchers can point to many uses for healthcare data. For example, Janet Currie, director of the Center for Health & Wellbeing at Princeton University’s Woodrow Wilson School, used state data to determine that there was a correlation between premature births and other negative health outcomes for infants and babies who were conceived during peak flu season. Currie said this study pointed to the potential need for pregnant women to receive flu vaccines.

Joel Cantor, the director of the Rutgers Center for State Health Policy, was able to use state data in a study describing describe widely varying patterns of frequent hospital use in low-income areas across the state.

This data may have convinced community and hospital officials to consider participating in the state’s Medicaid Accountable Care Organization program, which is supposed to launch later this year and help healthcare providers better coordinate patient care, Cantor said.

But the state Department of Health is “underfunded and understaffed,” Cantor said.

He added that while state health officials have been “great” in working with researchers, “They said they no longer have the capacity to do that – we’re asking for too much” to complete similar projects in the future.

Cantor said healthcare researchers “have to take the next step and really open discussions about” how to make available more of the information that Cantor and other Rutgers researchers have used to help community health planning.

Brenner, medical director of Cooper Health System’s Urban Health Institute and executive director of the Camden Coalition of Healthcare Providers, said he has had success working with hospitals on ways to share data. While this information may not be enough to reach conclusions about how to improve healthcare, “I think it puts people into position to ask better questions,” about the healthcare system, Brenner said.

But Brenner expressed disappointment that researchers aren’t able to access all of the data they need.

Brenner asked Cantor to describe the experience of spending two years trying to get data for a research project, only to have the grant funding expire once the data was accessible.

“I think it’s important for people to know how delayed this stuff is getting,” said Brenner, who added that lawmakers should hold hearings on the subject.

“This is why we have a legislative process,” he said.

If state officials “won’t make a data set available for academic researchers because they don’t have the resources, then we need to petition legislators and ask for changes to the law and for more oversight of government,” Brenner said.

Data Being Used Incorrectly?

Brenner laid out a broader critique of how healthcare organizations are using data. He said that they are “obsessed with predictions instead of surveillance,” and that instead of trying to guess which rare events will affect patients in the future, they should instead focus on common health problems that are occurring “right now.” Brenner has received national recognition for his advocacy of using patient data – such as information on patients visiting emergency rooms – to target follow-up visits and better coordination of care.

Brenner also said healthcare organizations are failing to “segment the data” on different demographic groups.

Brenner added that organizations misstep when they give information-technology departments the job of analyzing data. While these departments are skillful at gathering and securing data, they are not in the best position to analyze it, he said.

New Jersey Health Care Quality Institute Vice President Linda Schwimmer noted that Horizon Blue Cross Blue Shield of New Jersey – where she previously worked – was able to give doctors data that allowed them to compare themselves with their peers.

“Physicians are competitive by nature and it started a conversation and it drove changes in behavior,” Schwimmer said.

Schwimmer suggested that healthcare researchers and advocates start a “movement” in favor of more open access to state health data.

Cantor said the Medicaid ACO program itself might be an important way for data to be shared more widely, since hospitals and doctors that participate in the program will have to share information with other providers.

Cantor called for the creation of “data enclaves” – organizations that would store and share data to make that information more widely available, with financial support from private foundations and federal research grants.

“I don’t think we can expect the state health department or the Medicaid program to be analytic support shops,” Cantor said.

Brenner added that New Jersey and other states are being affected by a “massive wave of retirements,” reducing their ability to respond quickly to requests for data. He said this makes it even more urgent for the Legislature to design a new approach that will make data available to researchers outside of traditional state programs.

Cantor emphasized that he believes that state officials have “good will,” but that limited funding is affecting access. He added that researchers themselves should strive to make data more accessible, by working to ensure that their reports are written in an accessible way that makes potential public benefits clear.

New Jersey isn’t alone in frustrating researchers seeking access to data. Both Currie and Cantor said they have had similar experiences in other states.

The discussion on the use of data in New Jersey was part of a broader conference organized by the Nicholson Foundation. The theme of the conference was “big data,” a term used to describe the vast quantity of healthcare-related information that is being gathered. Officials with the foundation and the Health Care Institute of New Jersey, which organized the conference, believe this data can be harnessed to serve the public interest.