Researchers have known for several decades that it can make a big difference whether you go to a local hospital or to a specialty cancer center for surgery. In fact, one 2001 study found a 10 percent gap in five-year survival between lung cancer patients who went to a high-volume cancer center and patients who went to a hospital where cancer surgeries were performed less frequently.
Despite this huge difference in performance, patients don't currently have the ability to compare hospitals, speaker Charles Ornstein, a senior reporter at ProPublica, said at Stanford Medicine X on Friday afternoon. "It makes me so angry. Are we sentencing people to death based on the fact that we're not providing information to them?" Ornstein asked.
Ornstein was part of a panel comprised of patients and experts who all agreed that a comprehensive tool allowing patients to compare hospitals would be beneficial.
"We're trying to give patients, or consumers, some ability to select places for cancer care based on data that is objective and understandable," explained panelist Peter Bach, MD, director of the Center for Health Policy and Outcomes at Memorial Sloan Kettering Cancer Center and first author of that 2001 lung cancer study. "These are robust differences [between hospitals]. We should allow patients to find their way to places where they can have the outcomes, and hopefully it will also have the effect of improving the outcomes at other hospitals."
As a first step, the team surveyed 3,334 patients who had received surgery for some type of cancer. They found that while 73 percent said they didn't compare hospitals, most of them were likely to use a comparison tool if one was made available.
The survey also attempted to identify how patients make decisions and found that more than half the patients wanted to know the reputation of the hospital for cancer surgery. (But, as pointed out by Dave Taylor, director of market research at Inspire, a company that builds online patient communities, marketing could play a big role in an organization's reputation). Interestingly, only a small percentage of patients were interested in the number of people that survived four years after surgery, Bach said.
The survey also included metrics on patient satisfaction, and Taylor suggested that caregivers should be included in surveys on patient satisfaction since "it is often the caregivers who are more critical and who serve as the best internal advocates." He noted that the group is working to publish their survey findings in an academic journal.
As for what patients and caregivers can do now, the panel recommended that they ask questions about both the hospital and the individual doctor's experience when it came to treating a particular condition. Ornstein said the patients should know if a hospital is only performing one or two cancer surgeries a year. "Would you want to be that one person if you were the patient?" he asked rhetorically. Any reluctance on the part of the doctor or hospital to release this information should be treated as a huge red flag, he said.
It's okay to ask a doctor how many of the same type of surgeries he or she performs, cancer survivor and panelist Tonya Bellati -- one of the patients who took the survey -- told the audience. Many skilled surgeons are glad to share. In addition, doctors should allow patients to record the visit so patients can refer to it later and to explain clearly what the surgery entails, she said.
Later, moderator and three-time cancer survivor Alicia Staley shared that she was one of six people from her western New York community who were diagnosed with lymphoma around the same time. Of those people, she is the only one alive today. "I often wonder: was that decision to go to an academic medical center a differentiator between me and the five other people?" she shared. (The others all went to a local or regional center.)
Staley may never know the answer, but, as emphasized by the panelists, patients have the right to know as much information as they can when making such choices.
Previously: It's back! Stanford Medicine X returns to campus
Photo courtesy of Stanford Medicine X