January 16, 2020

A new website tells cancer patients their odds of dying. Is that a good thing?

Daily Briefing

    This month, a new website launched that enables cancer patients to view survival rates for their diagnosis based on a few simple data points, and while some doctors are skeptical about patients turning to the internet for answers, providers behind the tool say it could help patients have more impactful discussions with their doctors, Elizabeth Cooney reports for STAT News.

    Chart the cancer patient journey—from diagnosis to survivorship

    How the site works

    Stephen Buck, co-founder of the drug-pricing information site GoodRx, is behind the new website called CancerSurvivalRates.com.

    The site has a tool that prompts users to enter information about their age and gender, as well as details about their cancer diagnosis, including things like the stage of their cancer, its grade, how much time has passed since their diagnosis, and their histology, Cooney reports.

    The tool then draws on data from the National Cancer Institute to compute how many people have survived that type of cancer for up to five years.

    "We designed this site to be extremely simple for people to understand. People aren't versed in odds and survival rates," Buck said. "We wanted to say out of 10 people, how many are alive after one, two, or five years."

    Tool could help doctor-patient conversations, team says

    Buck, alongside a team of oncologists and other experts who advised on the creation of the tool, said the information the tool offers should be used to foster discussion between patients and providers about their future.

    "We want this to be a conversation starter, for someone to take this information and ask their physician, what do you think about my prognosis?" Buck said.

    Buck and his team explained that the shock patients experience when they first hear they have cancer can make it difficult for patients to absorb more information in the moment. However, later, outside of the doctor's office, patients and their loved ones may end up searching the internet for more information, including their prognosis.

    Shoshana Ungerleider, an internist at Sutter Health who served as an adviser on the tool, said patients and families searching for answers on the internet can have difficulty "track[ing] down accurate information about prognosis. It can get pretty technical pretty quickly." She added that what she appreciates about the tool is that "patients can really be proactive if they want and say, well, I have just been diagnosed with stage 4 cancer. I do want to know what the future may hold for me."

    Jim Murphy, a radiation oncologist at the University of California, San Diego, who also advised on the tool, said it can help patients see a broader overview of their cancer and bring that information to future discussions with providers. "I think prognosis can be difficult for patients to hear and for physicians to effectively relay this information," Murphy said.

    However, some providers remain circumspect of online tools that provide a prognosis.

    Jennifer Temel, a thoracic oncologist at Massachusetts General Hospital who studies doctor-patient communication, said, "As a thoracic oncologist, many of my patients have a prognosis of months or a year and that is not something you want to find out on the internet without communication with a clinician, support from your oncology clinician, maybe support from social work and palliative care." She added, "From my perspective, more importantly, we just want to be there for our patients and families when they are getting information like this" (Cooney, STAT News, 1/15).

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