Tuesday, April 9, 2013

Why don't have I have a patient navigator?

I need a patient navigator. The idea behind a patient navigator is to help newly diagnosed people deal with the mysteries of all these new doctors, treatments, and help them through the process by being there as the go-to person. Its part of the new patient centered care which is a great idea.

An experienced person is assigned to a newly diagnosed person. The experienced person can be someone who simply is more familiar with the hospital and how it works or can be someone who has been through the same ailment (s).

My health is complicated and I have lots of doctors so why don't I get a patient navigator? I think the real answer is that no one else has the same set of ailments as me. I know a couple people who have had both breast and thyroid cancer. I know other people with RA. I am not sure I know anyone else with fibromyalgia, yet - I am sure that will change.

The odds of getting breast cancer in a woman's life time is 12.4%
I couldn't find the odds of getting thyroid cancer but if there are 60,000 cases diagnosed in the US this year and which is about 1/4 the rate of getting breast cancer so we'll say its about 3.1%.
Fibromyalgia affects 2-4% of the population
Rheumatoid is diagnosed in an average of 41 of each 100,000 people.

If we do all that math the answer is three people. 0.124*0.031*0.04*41*3139.14=19.15 (see below for update)

What I did is 12.4% chance of getting breast cancer times 3.1% chance of getting thyroid cancer times 4% chance for getting fibromyalgia times those 41 RA patients in each 100,000 times 3139.14 for the 313,914,040 residents of the US.

So somewhere there are 18 other people who might be like me.

The other reason I don't have a patient navigator is I know the hospital I go to better than a lot of employees. I  have been a patient there since 1981. It opened in its suburban location in the late 1970s. I run into people there who say I have been here since the 1990s. But then I tell them about the hospital before the first renovations when we all checked in at the front desk in a big line. Anyone who worked there when I started going there has since retired.

This is why I don't have a patient navigator.

I guess I have to suck it up and figure it out on my own. I'm not very good at the sucking up part.

*Update on 4/11 I found that the lifetime risk of thyroid cancer is 1.03%  so that changes my little formula to 41*0.124*0.0103*0.04*3139.14 or 6.575268. So somewhere else in the US there might be 5 and 1/2 other people like me.

1 comment:

Jen Biasi said...

Hi Caroline,
My name is Jen and I work with the Harold P. Freeman Patient Navigation Institute. We can look into finding you a PN, but I would need to know where you are located. Please feel free to email me at sms@hpfreemanpni.org and I can try to help!