Published by Lilo H. Stainton on NJ Spotlight.

‘De-identified’ healthcare data makes it possible to track treatment, providers, fees without identifying personal details

New Jersey citizens and policymakers would be able to access “de-identified” healthcare data related to nearly two million residents under a new proposal designed to help improve decision making about personal care and public health programs.

The legislation introduced by Sen. Joseph Vitale (D-Middlesex), would add New Jersey to the growing lists of cities and states that have harnessed this “encounter” data, which reveals details about a patient’s treatment, providers, and reimbursements – without exposing personal details. The measure is slated for a hearing Monday in the Senate health committee, which Vitale has long chaired.

Experts agree that factual information about individual medical care and the resulting bills are critical for consumers responsible for their family’s care, and for policymakers charged with protecting public health, often on a fixed budget. The healthcare transition team advising Gov. Phil Murphy, who took office in mid-January, included improving access to Medicaid data as a top priority in its recent report.

Several of New Jersey’s Medicaid Accountable Care Organizations, regional healthcare collaborations that have focused on improving outcomes for the most vulnerable patients, have used claims data effectively to identify service gaps and target individuals who were among the biggest medical consumers for better wraparound care. The “hot-spotting” method developed by the Camden Coalition of Healthcare Providers, which uses data to identify healthcare’s highest users, is becoming a national model.

Medicaid coverage

Medicaid now covers 1.8 million New Jerseyans, half of them under age 18, in a program targeted to help poor and working-class families. The program costs close to $15 billion annually, two-thirds of which comes from federal sources, and makes up 20 percent of the state’s total budget, according to the New Jersey Health Care Quality Institute, which has long advocated for increasing transparency around Medicaid claims.

“The lack of publicly available Medicaid cost and utilization data has been consistently identified as a major impediment to reforming the Medicaid program in New Jersey. Providers have difficulty evaluating how their services fit into the large delivery system,” the NJHCQI wrote in its Medicaid 2.0 blueprint for reform, published last spring. Linda Schwimmer, the institute’s president and CEO, also played a key role in Murphy’s transition team.

“Taxpayers and policymakers are unable to see, in a timely way, the relevant effectiveness and spending in key areas such as hospital and pharmacy, and therefore how the Medicaid program’s performance … compares to other healthcare systems in New Jersey and elsewhere. This data is to inform and guide system improvements going forward,” the report continued.

Much of this information is already reported to the state on a quarterly basis; the state also shares the data with the federal Centers for Medicare and Medicaid Services, which aggregates the findings and posts it for public review, according to Vitale’s bill, (S-496), which was first unveiled in November and reintroduced in January for the current legislative session.

Delivering more details

“This legislation is intended to require New Jersey to provide the information in a more detailed manner to the general public and is based on similar projects in other states that have begun to make this information publicly available,” the bill states. “The sharing of the information leads to improved health outcomes and transparency on the provision of publicly funded healthcare.”

The proposal builds on the work of the New Jersey Integrated Population Health Data project, or iPHD, which was formed two years ago as part of the Rutgers Center for State Health Policy in an effort to build and integrate data sources that can be used to benefit public health. The project’s governing board – which includes state officials, private security experts, and officials from Rutgers, among them CSHP director and NJ Spotlight columnist Joel Cantor – would be tasked with creating and maintaining the database, transmitting the information, and adopting policies regarding its use and upkeep.

According to a whitepaper from the Good Care Collaborative, a state-wide organization that grew out of the Camden Coalition and was instrumental in creating iPHD, other states have built integrated claims databases using models developed by successful private-sector organizations.

Washington State’s program has improved its ability to collect and analyze critical research; South Carolina has the ability to create detailed maps to evaluate service gaps; and Rhode Island has crafted narrative “data stories” from their findings to illustrate the dangers to youth of drug use or chronic absenteeism, according to Good Care. Maryland, New York City, and Los Angeles also have built interactive databases with claims information.

“Good care requires good data. As healthcare costs rise and patients and providers become increasingly frustrated with the system’s failures and inefficiencies, new and innovative solutions are urgently needed,” the collaborative wrote in its 2015 whitepaper.

New Jersey’s legislation calls for using “de-identified” data, or information that does not reveal the identity of the patient, according to federal guidelines set by the 1996 Health Insurance Portability and Accountability Act, or HIPAA. It would include details on the type of service, the date, the provider’s name and location; it would also feature a mapping function. All the information would be posted online for easy public access.

Claims data would be less specific, reported by type of service as part of a geographic region, not for individual patients or procedures. The bill calls for five regions, organized as follows: northeastern, which will include Bergen, Hudson, and Passaic counties; northwestern, which will include Hunterdon, Morris, Somerset, Sussex, and Warren counties; central, which will include Essex, Union, Middlesex, and Mercer counties; south central, which will include Burlington, Camden, Monmouth, and Ocean counties; and southern, which will include Atlantic, Cape May, Cumberland, Gloucester, and Salem counties.