Oregon releases less health data

Most hospitals around the country track and report complications of medical care. While many states make this information public, Oregon does not. That means that the best information about an individual hospital's quality and safety may be kept from the public. In this project, Betsy Cliff reports on the patient safety issues in Oregon health care systems.

Part 1: Medical harm

Part 2: Oregon releases less health data

The comparisons in the accompanying article on patient safety use Medicare data. It gives a good snapshot of what is going on in hospitals because Medicare patients make up a good percentage of patients at most hospitals.

But better data, using all patient records, does exist. Most hospitals around the country track and report complications of medical care.

While many states make this information public, Oregon does not. That means that the best information about an individual hospital’s quality and safety may be kept from the public.

“We operate in a health care system that consumes 17 percent of the gross domestic product and is more than 50 percent publicly funded, so I think taxpayers have a right to know what the outcomes are,” said Dr. Patrick Romano, a professor of medicine at the University of California, Davis, and an expert on patient safety.

“The majority of states will either release the data in a way that identifies individual hospitals or they have a mechanism for giving approval for such releases,” Romano continued. “Oregon is behind the times here.”

Oregon does make some limited information public through a state-administered database that includes records from every patient admitted into an Oregon hospital. Without giving identifying information, such as a name, this database includes some useful information, including where the patient was treated and the primary diagnosis on admission.

But the database leaves out secondary diagnoses or complications from care. That means much of the information that could be useful in comparing hospital quality or safety is left out.

“We would like to see more transparency,” said Mike Bonetto, health care policy adviser to Gov. John Kitzhaber. “Anytime you have information that’s out there, you really are beginning to engage and enhance someone’s knowledge around performance of hospital and cost, which is always a good thing.”

Some Oregon hospitals, too, said the information should be more widely accessible. “We think it should be publicly available,” said Dr. David Holloway, chief medical officer at Salem Hospital. “There’s something about transparency that helps set the priorities for physicians.”

Oregon Health & Science University “believes in transparency,” said Dr. Charles Kilo, chief medical officer at the hospital. “By not being transparent, it tends to imply you are trying to hide something, and that’s never good.”

Oregon hospitals already report the kind of information that could be used in building a robust database; the state is one of 40 with a reporting mandate. And, indeed, the data are sent to the federal government, where they are used in an aggregate database, and can be bought by nonprofit institutions for use in analyses that do not identify individual hospitals.

But the full data set, known as an inpatient discharge database, is collected and owned by the Oregon Association of Hospitals and Health Systems, which represents and lobbies for Oregon hospitals. OAHHS is the only entity that can grant use of the data to for-profit entities, including most types of journalism organizations.

The Bulletin requested use of the full inpatient discharge data set from OAHHS in November. In an emailed response, Kevin Earls, senior vice president at the organization, wrote that “the information you’re seeking is considered confidential and proprietary under the terms of our agreement with the hospitals whose data we collect.”

When asked for further explanation about why the data could not be released, Earls wrote the full dataset “is not available to, nor intended for, the general public.”

Yet other states make hospital-specific information through their inpatient discharge databases much more widely available. For example, on the West Coast, Oregon is the only state that does not release the data in a format that can be used for analysis of hospital complications at individual hospitals. In California and Washington, data is collected by a state agency.

Texas, Utah, Nevada, New York and Pennsylvania also make much more information public than does Oregon. In all of these states, a public agency collects the hospital data, according to the National Association of Health Data Organizations.

There is no systemic analysis of what information is available from which state. Some states are very public with their data while others, including Idaho, do not routinely collect this information at all, according to the national association. (The Idaho Hospital Association did not return calls for comment.)

The data availability “is very political,” said Denise Love, executive director of the national association and an expert on hospital data availability. “It’s who wins on the ground.”

She said her organization favors a more open approach. “It gets many people looking at the data. It levels the playing field in a community to have different users,” she said. “If you have limited access, you can say anything you want and no one can challenge it. That’s the proprietary database.”

These databases are structured in such a way that every individual patient who is admitted to the hospital is included as a separate entry. While that means fairly sophisticated skills are needed to interpret the data, it allows researchers, news organizations or other entities to look at hospitals with a high level of detail.

In other states, the data have been used to look at patient safety concerns at hospitals. And, in Washington, reporters for The Seattle Times used the data to uncover a dramatic rise in drug-resistant infections throughout hospitals in the state.

But releasing the data can also raise significant privacy concerns if not well-administered. For example, if a patient’s name or other identifying details are left in the database, it could reveal protected, and often very sensitive, health information.

States that do release this information have mitigated privacy concerns by stripping personal information from the data sets. Names are never included. Similarly, said Love, other identifiers, such as a patient’s date of birth or zip code, may also be taken out.

She said when done right, privacy concerns can be adequately addressed. “These databases have a pretty good track record. Releases have gone on for about 30 years. We have not known about any breach of (patient) privacy.”

Right now in Oregon, the inpatient discharge database is the only way for researchers or others who want detailed information about the state’s hospitals to get it. However, the state is currently in the final stages of producing another database, known as the all-payer, all-claims data set, that could give very similar information.

That data set will be based on insurer claims for all Oregon health care providers, both inpatient and outpatient. Currently, the final rules are being discussed by state committees, said Gretchen Morley, director of health analytics at the state’s Office for Oregon Health Policy and Research, which is administering the database.

She said she was not sure about whether provider- or hospital-specific data would be available.

Bonetto, in the governor’s office, said he had high hopes for the all-payer, all-claims data set. “I want to see where the public advisory committee lands. The hope is that we can make more and more available.”

“We are fully supportive of as much transparency as possible,” Bonetto continued, pointing out that more quality information is available now than a decade ago. “Are there some things we don’t have? Yeah, and I think we’re going to be working on that.”