How to Navigate the Healthcare System Like a Professional
People with complex illnesses end up in frequent contact with our healthcare system: surgeries, doctor visits, specialists, treatments, imaging tests, and more. And that, in a sense, makes them experts on how to get the most out of your visits.
A poll by the New York Times, the Commonwealth Foundation and the Harvard School of Public Health reveals important advice from some of the most seriously ill people in America. Of them:
Keep records of everything
Several doctors may order the same test; Not all of your current medications may be in the system. there may be a delay in the delivery of records from one location to another. The more your own records, the better. There are several ways to do this:
- Ask each health care provider or office for a record of your visit (including test results and imaging).
- Bring a list of your medications with each visit.
- Write down any advice you were given
- List the questions you want to ask. Bring a list, don’t rely on memory.
Rely on a trusted friend or family member
Depending on how sick you are, you may not be able to handle all of the above on your own. Ideally, you should have a close friend or family member with some medical background who knows what questions to ask and how to identify potential problems before they arise. Someone who can help you navigate the healthcare system, find the right doctors, choose one of the treatment options.
Unfortunately we were out of luck. If you are pregnant, you can hire a doula, but there is no equivalent for most other interactions with the healthcare system. The people in the survey sometimes said they relied on a person in their insurance or hospital system whose job it was to coordinate their care. Check if you have such an opportunity. Half of the critically ill people surveyed had it, and 95 percent said it was good for them.
More than half of those surveyed needed help at home, often from friends and family.
Communication with other patients
There is another important source of help: many patients (23 percent) found people who had had similar experiences and asked for their advice.
(I did it myself when I injured my knee while playing sports: I had teammates who walked me through the processes of finding a doctor, deciding on surgery, and preparing for recovery. Soon after, I found myself playing the same role for Someone Else Having a medical travel mentor goes a long way in everything from your way of thinking to the long-term consequences of decisions you can make to the practical realities of getting around on crutches.)
Almost every disease or chronic illness has a community somewhere, often on Facebook or in a patient forum. For common but serious conditions such as breast cancer, your hospital can offer you a personal support group. People may also gravitate towards you by word of mouth; don’t be afraid to ask if they have any advice. You can discuss your concern, find empathy, and get even more advice from people who know the healthcare system best.