The Pros and Cons of Infusing Cancer Patients With Statistics and Test Results

Monday, February 20, 2017: 9:00 AM-10:30 AM
Room 311 (Hynes Convention Center)
Brian Zikmund-Fisher, University of Michigan, Ann Arbor, MI
Being a cancer patient, or even being someone considering getting a screening test for cancer, involves lots of data. I know. In addition to being a health communication researcher, I’m also an 18-year survivor of a bone marrow transplant.

In modern medicine, cancer screening, diagnosis, and treatment decisions are data driven. Patients can learn about their risk of cancer using online risk calculators. If they are diagnosed, they can track their status through blood tests of different types. When considering treatment, patients can learn about the rates of cancer recurrence for different treatments and balance those benefits against side effect risks. And, increasingly, genetic sequencing of cancer tumors is used to provide further guidance for decision making.

Unfortunately, these types of data are difficult for most patients to use, because simply knowing your number doesn’t actually provide meaning. The problem is called information evaluability. In the context of cancer, most patients struggle to know whether their risk percentage or test result value is good or bad, which makes it difficult for those cancer patients to use the information they have to make better decisions. Even more problematic are tests that either produce ambiguous findings or those which suggest options that are not, in fact, available to the patient. Furthermore, being bombarded by information that is confusing is both distracting and emotionally upsetting to cancer patients who are already overwhelmed and vulnerable.

Thus, we face a dilemma: Patients could use cancer risk estimates and test result data to make better decisions. However, patients may end up worse off if providers and health educators do not actively work to filter the information flow and make what is provided more intuitively meaningful.

Like cancer treatments, cancer information can be very powerful when communicated in ways that are responsive to patients' needs, but its potential to cause significant harm must always be respected.