Outcomes data provide patients with an inside look at cancer centers’ performance records.
By Laurie Wertich
For most big decisions and purchases, we do our homework, read reviews, and ask for recommendations. If you need a new hairdresser, you look around for someone with a great haircut and ask for a referral. If you’re trying to choose a new restaurant, you may pore over online reviews. You want to make sure these businesses have good outcomes before you subject yourself to their services.
So why should it be any different with cancer treatment? If your chances of survival were significantly different based on where you chose to undergo treatment, wouldn’t you want to know? If you had a rare cancer and there was a cancer center with documented success in treating rare cancers, wouldn’t you be interested in which one?
It turns out some cancer centers have realized that patients want to know more and have begun to offer a valuable resource: their outcomes data.
Outcomes data is a broad term used to refer to the collection of data summarizing the outcomes of cancer treatment. The data may include information about incidence, treatment, survival, recurrence, mortality, and treatment complications.
Until fairly recently, patients interested in reviewing data related to their diagnosis had one major source of this information: the Surveillance, Epidemiology, and End Results (SEER) registry, maintained by the National Cancer Institute, which is a general database of cancer statistics gleaned from individual US cancer registries. The SEER database provides information on incidence, prevalence, survival, and mortality for more than 40 types of cancer. The public database compiles and analyzes the data in numerous ways, providing information about average survival rates, age at diagnosis, and even prevalence of cancer types based on ethnicity.
The SEER database provides a benchmark. It’s a collection of data that paints the big picture in terms of cancer incidence and trends. What it doesn’t provide is the smaller picture: what are the outcomes at individual cancer centers, and are some cancer centers better than others at treating certain cancers?
The fact is, outcomes data from individual cancer centers do exist. To maintain accreditation, all accredited cancer treatment centers must maintain detailed cancer registries, which are audited each year by the American College of Surgeons. Most cancer centers don’t make this information public, however; instead it gets pooled into the general SEER database. A few notable cancer centers are now bucking this trend and blazing a trail toward published outcomes data.
Until recently, outcomes data were inside information—and you were likely to unearth those results only if you started digging, researching, networking, and asking for referrals. As cancer centers begin to publish their outcomes data, they are, in essence, unlocking a mystery of cancer treatment and enabling patients to make more-informed decisions.
Several major cancer centers, including Cleveland Clinic, MD Anderson Cancer Center, and Cancer Treatment Centers of America® (CTCA), now publish outcomes data on their websites, allowing patients a more detailed glimpse into their results.
Edgar Staren, MD, PhD, MBA, senior vice president of clinical affairs and chief medical officer at CTCA, explains: “We feel that we have a responsibility to patients to provide them with detailed information, in terms that they can understand, so that they can make a decision about their treatment.”
Dr. Staren says that he believes CTCA’s straightforward approach to publishing its results makes patients feel comfortable and provides them with a sense of control they need while making treatment decisions.
The Taussig Cancer Institute at Cleveland Clinic publishes an annual outcomes book that is available on its website or through the clinic. Dr. Derek Raghavan, MD, PhD, chairman of the Taussig Cancer Institute, says the book is intended to provide a transparent look at the quality of care the center provides. “We try to write it so that Mrs. Smith could look at it and not be totally lost,” he explains.
Why Is this Information Important?
Many cancers today are easily treatable, due in large part to early diagnosis. Treatment of these cancers is likely to produce similar outcomes at just about any cancer center. But some cancers are diagnosed at later stages or are more difficult to treat. In these cases, outcomes data may provide insights into which clinic is likely to provide optimal treatment.
Dr. Raghavan explains that a doctor who sees several thousand cases of testicular cancer each year, for example, might have a better feel for the complications that can arise than a doctor who sees only two or three cases a year. “I want to be clear that I’m not saying community treatment is inferior,” he cautions. “There are many positive reasons for being treated in the home community.” The key is to have access to all the information to make an informed decision about whether that setting is right for you.
Both CTCA and Cleveland Clinic provide their outcomes data in comparison with the SEER data so that patients can evaluate how the cancer center performs compared with national averages. “Where we see improvement compared with the community standard [SEER data], we list it. Where we see that things aren’t up to the community standard, we list that as well.” Dr. Raghavan says. “I’m proud of the fact that the clinic lets you take a look at us, warts and all. And I’m proud that the team works to make our quality as high as we can.”
In fact, Dr. Raghavan insists that one of the major benefits of publishing outcomes data is that it provides a level of transparency that lends itself to continued self-evaluation and improvement. “Our belief is that the way to be better is to know how you’re doing and to set a target. Then you measure it and you know whether you’re doing a good job,” he explains.
Dr. Staren echoes this sentiment. “While our data is excellent, we’re not satisfied and we want to continue to get better,” he says. “Patients understand that if an organization puts that information out there, they’re striving to do better. Who would not want to go to an organization that is always striving to do better?”
Who wouldn’t, indeed? So, why aren’t more cancer centers providing this information to the public?
“I think there is a mistaken impression on the part of a lot of centers that this is too complicated for patients to understand,” Dr. Staren says. “We actually take the other viewpoint—that patients are plenty well-educated and want to be more educated. We want to provide them with as much information as possible.”
Toward Consumer-Driven Healthcare
Only a few major cancer centers have taken steps to publish outcomes data, but it’s a step in the right direction. Patients spend hours perusing the Internet to learn about their illness. They want to be educated. Outcomes data is one part of this equation.
“I think this practice will grow quite substantially as consumers demand it,” Dr. Staren says. He insists that healthcare should be consumer-driven and that patients should choose treatment based on quality.
“Ultimately, choices are often made because you are told to go somewhere, but people are starting to ask why,” he explains. “They’ve done this with everything from their stereo purchase to their car purchase, why wouldn’t they do it with their healthcare?”
As Dr. Raghavan explained, published outcomes data provides a level of transparency that helps patients make informed decisions. “They can make a judgment over whether it is worth coming to see us or not,” he says.
Evaluating Outcomes Data
Outcomes data does not guarantee that you will experience a specific outcome. Outcomes data simply indicates how a group of people responded to treatment. Outcomes data can be useful for understanding your prognosis and choosing treatment. When reading outcomes data, it’s important to understand the information that is included—and not included. Look for:
Patient characteristics (such as age, gender, ethnicity, diagnosis, disease status, overall health, risk factors)
Number of patients included in the data
Dates of treatment and length of follow-up
Types of outcomes reported (overall survival, disease-free survival, progression-free survival, treatment complications)
Remember, no two people will have the same response to treatment. Outcomes data provides general information from which you will try to make individual decisions. Evaluate it carefully.
Explore the Data
Some cancer centers publish thorough outcomes data for every cancer type, whereas others may list data for only a few cancer types. Visit these websites to see examples of published outcomes data:
Taussig Cancer Institute, Cleveland Clinic
Cancer Treatment Centers of America
MD Anderson Cancer Center
Surveillance, Epidemiology, and End Results, National Cancer Institute