The days of medical providers assuming they know what patients want is ending. Government agencies, industry and healthcare providers all want to know what patients value. What is important to patients? How can we find out? How can we help patients?
Early in my treatment, a doctor walked in and said, “What can I do for you Mr. Clay?” A nice open-ended question designed to find out what I valued. The problem? I didn’t know enough to know what I wanted or what he could do.
Setting goals and defining values requires two things: education and support. Setting goals and establishing value is about making choices. I need to know what my choices are; then I need support to get there.
I wish knew about the Colon Cancer Alliance when I was in treatment in 2004. The Colon Cancer Alliance website is an excellent source for colon cancer information. You can learn about symptoms, stages and treatment options, including clinical trials. The Colon Cancer Alliance also provides support through their free Helpline (877-422-2030), Buddy Program and Facebook group Blue Hope Nation.
Patients may encounter barriers to reaching their goals—the biggest being financial toxicity. Cancer is as much a disease of the wallet as it is of the body. Surprisingly, transportation is the number one financial complaint cancer helplines hear about from their callers. I participated in the recent Patient Access to Community Treatment (PACT) Hill Day on this very subject.
Communication with your treatment team can be another huge barrier; I don’t always know what screening or treatment related questions I need to ask. The Colon Cancer Alliance has a list of questions you can download, print and ask your doctor.
This blog was written by Certified Patient Support Navigator Crawford Clay.
Additionally, doctors may not always know what to ask their patients. Organizations like the National Quality Forum (NQF) and the National Comprehensive Cancer Network (NCCN) are working to formulate questions for doctors to ask. In 2010, Congress created the Patient Centered Outcomes Research Institute (PCORI) specifically to put patients in the center of treatment.
When I was diagnosed, the best advice I received came from a stage IV (brain) lung cancer survivor. He said, “You have to get them [medical professionals] to see you as a person.” You have to make your wants and wishes known. Then, you can work with your treatment team to achieve your goals.
Don’t forget, the Colon Cancer Alliance serves as a source of information about colon health. If you have additional questions about colon cancer screening or are in need of support, please contact our free Helpline at (877) 422-2030.