CANCER CENTERS PUBLISH SURVIAVL DATA

February 10, 2011 — Last month, Fox Chase Cancer Center in Philadelphia, Pennsylvania, started publishing survival data of patients treated at their center for breast, prostate, lung, and colorectal cancer. Fox Chase joins a small but increasing number of cancer centers either publishing such data or contemplating it.
Like other centers that are already publishing, Fox Chase provides different graphs for each of the 4 stages of the individual cancers. At Fox Chase, survival outcomes are compared with data from the National Cancer Data Base.
Such "transparency" is the future of oncology, according to Brian Bolwell, MD, interim chair of the Taussig Cancer Institute at the Cleveland Clinic in Ohio, which has published their cancer survival data since 2008.
Patients and especially referring physicians want the information, said Dr. Bolwell. He believes that the government will eventually mandate such disclosures.
"Eventually, everybody needs to get on board," he said.
Another key motivator for publishing outcomes data is business competition, said Arthur Caplan, PhD, a medical ethicist at the University of Pennsylvania in Philadelphia.
"Centers are fighting for market share," he said. "In Philadelphia, there are at least 10 cancer centers — and probably more — in the metro area, including ones at major academic centers such as Fox Chase, Penn, and Jefferson."
Fox Chase, which is a National Cancer Institute (NCI)–designated center, wants to distinguish itself from community-based hospitals and their cancer programs, suggested Michael Seiden, MD, chief executive officer at Fox Chase, in a story on a local Web site.
"There is a little bit of a lack of awareness in the community about what an NCI-designated comprehensive cancer center is, and how it differs from cancer programs within community hospitals," Dr. Seiden said in the NewsWorks story. "We were trying to think about ways to articulate this to the public."
The Taussig Cancer Institute competes in the northeast Ohio market with 4 other "major hospital-based healthcare systems," Dr. Bolwell noted, adding that none of the competition has yet published outcomes data. Business interests are tricky, he explained. "One of the challenges going forward is drawing the line between science and marketing."
Survival as Marketing Tool
Medicine has no shortage of examples in which marketing considerations trump science and/or patient concerns, said Dr. Caplan.
"Infertility clinics used to publish 'success' rates based on pregnancies, not live births, even though babies were what ultimately mattered," said Dr. Caplan, adding that federal legislation eventually outlawed that practice.
Oncology is open to such manipulations, he said. "What if your survival data for advanced lung cancer are better than the national average, he said, citing a hypothetical case, "but your patients never get out of intensive care — and that is not disclosed in the data?"
Patients are wary of marketing motivations in outcomes data, said Cindy Barnard, MBA, director of quality strategies at the Northwestern Memorial Hospital in Chicago, Illinois, which has published oncology survival data since 2009 as part of a larger hospital-wide program.
"We did focus groups with patients and they were skeptical about marketing," she said.
Northwestern Memorial, which is affiliated with the Feinberg School of Medicine at Northwestern University and the Robert H. Lurie Comprehensive Cancer Center, made establishing "solid, reliable information" a "top priority," said Ms. Barnard.
But she also reports that "there is evidence that patients are not using hospital Web sites for decision-making." Nevertheless, at Northwestern Memorial, there seems to be an exception in surgery, where the cardiac surgeons "love it" and tell stories of patients coming into office visits "waving printouts from the site."
In oncology, the most common feedback from patients is: "Can I have more data?" she said, explaining that the Web site has a "questions and comments" box highlighted on every data page.
Who's Who
In an informal survey of a number of regional cancer centers in the United States, Medscape Medical News found that, in addition to Fox Chase, Taussig, and Lurie at Northwestern Memorial, the Cancer Treatment Centers of America and Vanderbilt–Ingram Cancer Center in Tennessee are also publishing survival data.
A number of other centers are considering publishing outcomes data, including the University of Texas M.D. Anderson Cancer Center in Houston and the University of Michigan Comprehensive Cancer Center in Ann Arbor.
Memorial Sloan-Kettering Cancer Center in New York City will publish outcomes online later this year, once an internal review process is completed.
In contacting cancer centers, Medscape Medical News learned that the following institutions are not currently publishing cancer outcomes data: Dana-Farber Cancer Institute in Boston, Massachusetts; the University of Texas Health Science Center in San Antonio; Johns Hopkins Kimmel Cancer Center in Baltimore, Maryland; the Swedish Cancer Institute in Seattle, Washington; the UNC Lineberger Comprehensive Cancer Center in Chapel Hill, North Carolina; and the University of California, San Diego Health Sciences in California.
The Cancer Treatment Centers of America publish more than just survival statistics — they include quality of life, patient experience, and speed of care results for the 10 most prevalent cancers treated at their facilities.
The Taussig Cancer Institute intends to add quality of life and patient satisfaction measurements in the future. "We need metrics that go beyond survival, especially for advanced cancer," said Dr. Bolwell.
Memorial Sloan-Kettering, which currently posts data on an institutional intranet site to allow staff to review the content before public release, has survival data and data on patient safety, pain management, and patient satisfaction, said spokesperson Jeanne D'Agostino.
All of the cancer organizations publishing data compare their statistics with another database. For instance, the Cancer Treatment Centers of America and Taussig both use NCI Surveillance, Epidemiology and End Results (SEER) data. However, as Dr. Bolwell pointed out, SEER is good for demographics but not as good for advanced profiling of disease, such as molecular typing. Thus, it is not possible to provide comparative data on outcomes in, for example, women with HER2-positive disease, which typically is more aggressive than most other forms of breast cancer.
There is another major problem with the publication of data by cancer centers, Dr. Bolwell acknowledged. "It's not peer-reviewed; this is all self-reported," he said.
Medical ethicist Dr. Caplan sees that as a problem. "I'm all for these data releases, but their meaning is limited when they are not systematized or uniform." Indeed, whereas some centers use SEER data, others use the National Cancer Data Base as a comparator.
But Dr. Caplan has a larger objection to the issuance of survival data. "What really matters is outcomes per doctor," he said. "It will be a lot more impressive when that's done." As is, Dr. Caplan believes there is a "potential for delusion," to think that an institution's standard of care applies to any and every particular doctor.
The researchers have disclosed no relevant financial relationships.