What’s a doctor to do when the language of medicine confuses his or her patients and prevents them from getting the care they need? Harness what we’ve been missing in medicine for far too long — the patient perspective.
I’m a family physician in rural eastern Colorado. I see stoic old farmers with heart disease, babies with ear infections, and everything in between. I’ve tried mightily to practice evidence-based medicine, which means following science-based recommendations from major medical organizations. But I came to realize that it often wasn’t working. The evidence was fine. But the language I was speaking didn’t mean much to my patients.
Take screening for colorectal cancer as an example. My older patients would listen dutifully as I recommended getting screened — a simple test that saves lives. They’d accept the glossy brochure from the National Cancer Institute that I gave them, and they’d even stop at the front desk to schedule a screening. Or so I thought. It turns out that many of them had no idea what I wanted them to do and were mainly stopping to chat with the receptionist.
I needed help. But instead of turning to medical experts, I went looking for another type of expert. I visited the homes of farmers, ranchers, merchants, schoolteachers, even a high school student. I sat at their kitchen tables eating pie, and shared my worries about colorectal cancer screening. Kitchen tables are important in eastern Colorado. So is pie.
I asked them to be part of a community advisory council for the High Plains Research Network, a group of physicians, nurses, and researchers working to improve the health of folks living in rural and remote eastern Colorado. The council’s task would be to turn complex guidelines into locally relevant messages.
About a dozen folks signed on. Their first task was to focus on boosting the number of people screened for colorectal cancer. The volunteers dove in. They learned about evidence-based guidelines on colorectal cancer screening from the United States Preventive Services Task Force, practiced doing colonoscopies with a state-of-the-art simulator, studied images of colon cancer and the precancerous growths known as polyps, and explored the various methods for colon cancer screening.
The council members concluded that the language I and other doctors use was getting in the way of explaining what people needed to do. They got rid of the term “screen.” Instead, they wanted their friends and neighbors to get a “test.” Instead of sharing the gory details of each type of test, they thought it would be best just to tell people to talk with their doctor about the test that was right for them. The group also suspected that those stoic old farmers and others might be avoiding the test because they’d rather not know they were sick. So the group highlighted the fact that the test can actually prevent cancer by finding and removing colon polyps early.
The council then shared this advice in places they knew the community would see it. They printed their simple message — “Talk to your doctor about the test that’s right for you.” — on farm auction fliers, which get a lot of attention in rural Colorado. They put notices at the grain elevator, cattle auction house, community clubs, businesses, civic organizations, and churches. They also shared the message with the local primary care providers, so we would know how best to talk with our patients about testing for colorectal cancer.
As some of the council members, other colleagues, and I write in this month’s issue of Health Affairs, the message reached two-thirds of the target population and rapidly increased colorectal cancer screening by 10 percent. This improvement has been sustained for a decade and has been replicated elsewhere.
The members of the community advisory council liked the process so much that they gave it a name: boot camp translation. And that’s exactly what it was — an immersive process to translate medical evidence so it is locally relevant, motivates community members to action, and provides essential elements for conversations with doctors.
This work didn’t stop with colorectal cancer screening. We have since done boot camp translations on high blood pressure, asthma, cancer survivorship, and mental health. With help from the Patient-Centered Outcomes Research Institute, an independent, nonprofit research organization, we have expanded the program into communities in Denver, southern Colorado, Oregon, Wisconsin, and North Carolina.
This is the future of medicine with patients — the people who best understand how to stay healthy and what it means to live with illness — helping lead the way.
As I discovered, patients are key to translating into plain English the stilted, often arcane language of evidence-based recommendations. Equally important, organizations like the Patient-Centered Outcomes Research Institute are changing the culture of research by getting patients involved in the process earlier and earlier, even contributing to the design of clinical trials. This helps researchers make sure they’re addressing the right problems, asking the right questions, and studying the right diseases.
Sure, this makes doing research a little more difficult. It can take time to teach patients about the scientific method. It takes patience to navigate the give-and-take between individual expertise and collaborative needs. But the results are more likely to be relevant to patients and those who care for them.
It’s an ongoing process. Until everyone is on board with patient-centered research, my friends in Colorado will keep on translating.
John M. Westfall, MD, is professor of family medicine and director of the High Plains Research Network at the University of Colorado Anschutz Medical Campus.