Welcome to Health Literacy Month. This year, we’ll look through the lens of health literacy to think about shared decision making. On the face of it, the shared decision making equation seems simple:
But there are health literacy issues on all sides.
There are numeracy challenges not just for patients, but practitioners as well. Patients desperately want to understand the risks and common outcomes of each treatment option. But physicians and researchers often need to unpack the numbers across multiple studies. And sometimes the numbers simply don’t exist — at least not in the straightforward way people want or need them. Other times, a doctor’s own experience with specific patients can influence how they think about or explain the numbers. And patients often see themselves as the exception to the numbers. And who hasn’t had the thought, if one in 15 die from this, I could be “the one”?
For example, if a 15-minute program or video goes over three options for prostate cancer: watchful waiting, radiation, and prostatectomy, it’s natural to spend less time explaining watchful waiting. There’s just not that much to go over — no big procedure to explain, not a lot of possible side effects, etc. But the time needed to explain what prostate surgery is, the risks and recovery usually just takes longer.
However, in focus groups we found that if we don’t spend almost the same amount of time talking about watchful waiting, even though there was less to explain, men felt it wasn’t a “real option”, or it must not be a good option – or even voiced concern the program may be biased against it. So in this case, time spent truly seemed to affect patient perceptions and understanding of their treatment options.
There are also common biases and preconceptions people have about treatments. If you know that many women believe the most aggressive treatment will give them the best chance of survival (say a mastectomy vs. lumpectomy), how do you account for that pre-existing bias in the shared decision making process?
So while shared decision making is not new (and really sounds a lot like a good practitioner having a meaningful conversation with a patient), the art and science of shared decision making still faces a steep learning curve. And there may not be one best way for the variety of decisions that exist.
Throughout the month you’ll hear a variety of insights and perspectives. In the spirit of shared decision making, please participate. Your questions, real experiences, and opinions can only move us further along the path of understanding what works.