By Heather Millar
I hate GPS systems that talk. “Turn left here, turn right there.” And if you overshoot, or decide to make your own decisions, or go around the block, the system barks that you are doing the wrong thing.
But it sure would be nice if there was some sort of cancer patient GPS to help us all find our way through the highways and byways of cancer treatment. I’ve written before about decision services, groundbreaking programs that help patients weigh the pros and cons of clinical decisions. But there’s a need for help before you get that far, when the first suspicious test comes back.
After my biopsy came back screaming, “Cancer!” I got a registered letter from the radiology practice informing me of this fact. At the time, I thought it was overkill. OK, I get it, I have cancer. But in my self-centered, post-diagnosis panic, I failed to register how privileged I was: I had good health insurance. I had a college degree. I was a science and health writer. I’d been through complicated medical sagas before. I knew how to follow up and find doctors, and get appointments.
This is not the case for many. And that’s especially true in less educated, less affluent groups. Study after study has found that, unfortunately, the less money and education you have, the less likely you are to receive effective cancer treatment. Poorer women are more likely to die from breast cancer. The National Cancer Institute found that African American males develop cancer 25% more frequently than white males and face a 43% higher mortality rate compared with white men for all cancers combined.
If you think about it for a minute, this shouldn’t be surprising: What if you don’t have an address where you can receive a registered letter from the radiologist? What if you don’t have health insurance and have no earthly idea how you’d pay for cancer treatment? What if you’re afraid of hospitals and doctors? Would you really follow up? Would you know how to find an oncologist, how to get copies of your medical records, how to make appointments for biopsies and second opinions? How to apply for financial help? Probably not.
As a society, we should find this intolerable. And since 1990, there’s been a movement to change it. Something called “patient navigation” helps vulnerable patients to get around the financial, logistical, and medical barriers to timely follow-up care.
This week, the Boston Patient Navigation Research Program released a study of patient navigation programs at six inner city community health centers. Three of the centers followed up with possible breast cancer patients; three followed possible cervical cancer patients. The study found that patients who used patient navigation services followed up and got a definitive diagnosis more quickly than those who did not.
We should have more patient navigation programs, don’t you think? Have you ever found it difficult to find your way through the medical “system”? Have you faced barriers to treatment or follow-up? How did you get around them? Share your experiences in the comments section