In an increasingly information-rich society, people have gotten used to finding out what they want to know with the click of a button. Figuring out the best place to go for cancer care, however, could stump the savviest Internet surfer, since hospitals have typically kept their track records for treatment success rates under wraps. Such information can make a life-and-death difference for patients, and Fox Chase is among those leading the charge for change.
By Benjamin Leach and Jacqueline Sufak
John Donahue is meticulous by nature. After more than three decades working in research and development and regulatory affairs for the pharmaceutical industry, Donahue understands the importance of good hard data. So when he was diagnosed by his urologist with early-stage prostate cancer in 2006, he knew he needed more information.
Besides consulting with his doctor and industry colleagues, Donahue combed the Internet for information on treatment options. When he investigated Fox Chase, he learned that it was one of only two institutions in North America using a new radiation-therapy technology called Calypso that operates like a GPS for the body, locating and tracking prostate tumors and enabling more accurate delivery of radiation therapy.
“Doing the research was really helpful,” he says. “It certainly influenced my choices.”
Donahue opted to receive his care at Fox Chase because of the state-of-the-art treatments it offered, which he felt gave him the best chance of avoiding surgery. But at the time, he had no idea exactly how successful Fox Chase was at treating prostate cancer at its various stages—what percentage of patients survived for at least five years after diagnosis, for instance. In fact, anyone seeking that kind of information for most hospitals nationwide would have come up empty. Five years later, that is starting to change.
In 2011, the Center published data comparing survival rates for patients treated at Fox Chase to those treated at two types of community-hospital cancer programs.
Fox Chase, as a National Cancer Institute-designated comprehensive cancer center, engages in both basic and clinical research, in addition to patient care, and meets peer-reviewed standards. It sees about 33,000 patients each year and provides a full range of diagnostic and treatment services.
Community-hospital comprehensive cancer programs diagnose and/or treat 650 or more cases each year. They provide a full range of diagnostic and treatment services onsite by referral and also conduct clinical research.
Community-hospital cancer programs diagnose and/or treat between 100 and 649 cases each year. They provide a full range of diagnostic and treatment services, though patients often are referred elsewhere for part of their treatment.
Definitions: the National Cancer Data Base
In January 2011, Fox Chase became one of the first cancer centers in the United States, and the first hospital in the Philadelphia region, to make its clinical outcomes data publicly available, publishing the information online at www.foxchase.org/outcomes. The website charts survival rates for patients treated for four major cancers—breast, colorectal, lung, and prostate—and compares outcomes for people treated at Fox Chase to those treated at both large and small community-hospital cancer programs, using data provided by the National Cancer Data Base.
In nearly all stages of all four cancers, patients treated at Fox Chase survive longer. For Stage I colorectal cancer, for example, 83 percent of Fox Chase patients remained alive five years after diagnosis, compared to an average of 76 percent of patients treated at larger community-hospital cancer programs and 74 percent of those treated at smaller programs. The cancers for which the Center published data are among the most common in the United States and the most often-treated at Fox Chase. The Center determined that it treated too few qualifying patients to date to publish useful results for other cancers; however, it plans to publish additional data as it becomes available.
The publication of such information is not without controversy; healthcare providers debate whether such data should be made publicly available. Fox Chase president and CEO Michael V. Seiden says it’s important to understand the data’s limitations, including the fact that it cannot predict individual outcomes. However, he says publishing the information reflects Fox Chase’s dedication to transparency and service to patients.
“We are committed to helping the public become more informed when making decisions about their health care,” Seiden says. “We hope this data will enable patients to make the choices that are right for them.”
THE (BUMPY) ROAD TO TRANSPARENCY
For Fox Chase, the publication of its outcomes data was sparked in part by a phone call from Journalist Sharon Begley, then of Newsweek in fall 2009. Begley was investigating the implications of receiving cancer treatment at a National Cancer Institute-designated comprehensive cancer center such as Fox Chase versus a community hospital, which typically lacks the same breadth of resources or volume of patients. The reporter was surprised to learn that comparison data was rarely available.
“In trying to find the oncologist or cancer center with the best track record on, say, stage IV bladder cancer, even the savviest patient quickly hits a wall,” Begley wrote in her article, “What You Don’t Know Might Kill You,” published in October of that year. “With few exceptions, cancer centers treat these ‘outcomes’ data like state secrets.”
The article points to striking disparities in diagnoses and treatment among the nation’s cancer-care facilities—in particular, between community hospitals and top cancer centers, but also among top centers themselves. About 85 percent of cancer patients are treated at community hospitals; however, her article suggests that while some cancers can be treated successfully in such settings, factors such as type and stage of disease can have serious consequences for survival rates. For example, Begley noted a five-year survival rate for Stage IV cervical cancer of 33 percent at the Cleveland Clinic, a comprehensive cancer center, versus 16 percent nationally.
Fox Chase provided data for Begley’s article, and the reporter’s inquiry set off an exploration by Fox Chase leadership and clinical faculty into making the Center’s clinical outcomes publicly available.
They had much to consider.
In January 2011, Fox Chase became one of the first cancer centers in the United States, and the first hospital in the Philadelphia region, to make its clinical outcomes data publicly available.
Third parties ranging from consumer magazines to Medicare rate healthcare providers on various performance measures, and although the reporting of clinical outcomes is expected to increase under the requirements of federal healthcare reform, such reporting is hotly debated among providers. Critics point out that patient populations and diagnostic criteria can differ from one institution to the next, preventing precise, “apples-to-apples” comparisons. For instance, there may be differences in patient populations—such as the age, general health, and socioeconomic status of those who seek treatment at major cancer centers instead of community hospitals—that are not accounted for in published data.
The handful of cancer centers that have released data also use different measures and comparison groups: While Fox Chase compares its results with those of community hospitals and provides data for each cancer stage, the Lurie Cancer Center at Northwestern Memorial Hospital in Chicago compares itself only to other teaching hospitals and does not separate its data by stages.
Fox Chase published its outcomes after lengthy and thoughtful consideration. “Ultimately, I think it’s being responsible,” Seiden says of the decision. “We have this data; shouldn’t patients have access to it?”
QUESTIONS OF CONSISTENCY
John Birkmeyer, director of the University of Michigan’s Center for Healthcare Outcomes and Policy, says the lack of uniform reporting might be misleading to patients who try to compare hospitals’ published data.
“More and more cancer centers are going to be making their outcomes data public,” Birkmeyer predicts. “But right now, each one is doing it independently. There’s no model that currently exists that any of these cancer centers are required to follow.” Given that hospitals could try to skew their data, he adds, even comparisons to established databases might be viewed with skepticism.
That concern arose more than 20 years ago in an early debate over outcomes. In 1989, the New York State Department of Health launched the first statewide program to make outcomes statistics for cardiac surgery available to the public. Some members of the medical community protested that physicians might refer high-risk patients out of state, since their higher mortality rates could bring down the physicians’ published survival rates. Conversely, some critics believed that physicians might be tempted to exaggerate patients’ serious risk factors to give the impression that they performed well on serious cases.
Donald A. Berry, a biostatistician at the University of Texas MD Anderson Cancer Center in Houston, argues against the publication of outcomes data. In a March 2011 editorial in The Cancer Letter responding to the release of data by Fox Chase and other center, Berry said he was proud of MD Anderson for not publishing its data, which would be difficult for patients to interpret. “Survival itself is a flawed measure of comparison, except in carefully controlled settings exemplified by randomized trials,” he said, noting that such trials would not be practical for cancer patients.
J. Robert Beck, chief medical officer and chief academic officer for Fox Chase, notes that while Fox Chase may be ahead of the curve in releasing its outcomes data, changes in healthcare policy may soon make the practice more common.
The Patient Protection and Affordable Care Act, signed into law in March 2010, calls for increased transparency and enhanced public reporting from hospitals—a requirement that could change reimbursement guidelines for hospitals. In the future, Beck predicts, “reimbursement isn’t necessarily going to be based on patient volume. It’s going to be based on patient outcomes.”
In the meantime, outcomes data remains one of many factors patients might consider when choosing a healthcare provider, says Fox Chase surgeon Robert Uzzo. When it comes to what patients care about, he says, the information constitutes an important piece of a larger puzzle that also includes factors such as physicians’ interpersonal skills and accessibility.
Uzzo sees outcomes statistics as an important tool, nonetheless—and one that will continue to improve, since the Center plans to publish additional data. “We’re going to have more and better data as time goes on,” Uzzo notes. “This really is a starting point.”
ON THE WEB
For outcomes charts and more information, visit www.foxchase.org/outcomes.