Get More From Your Healthcare Provider

By Michelle Lowes, MD PhD

EmpowerMyHealth

helping people make informed decisions in health and illness

In my last post I laid out a problem: medical and health information is complicated and scattered, making it difficult to navigate the medical world. Yet, we’ve been hearing more about “patient involvement” in health care. What does this really mean? Probably different things to different people.

I recently read Shannon Brownlee’s very interesting book Overtreated, which contains useful lists for the navigation process, summarized here:

1.  Find a primary health care provider that you can talk to. This is so important. Find someone you can communicate with and who can coordinate your care. Even if you change insurance, stick with them if you can.

2. Ask questions. It can be really hard to ask questions of your healthcare provider, and the more expert they are, the harder it can be to talk to them. You may need to make a separate appointment to have this conversation, but when it happens, take notes or record the it so you can get all of the important information.  It’s hard to simply remember everything! You may not have to make decisions during your appointment. You might be able to go home and think about it, talk it over with your family, and sleep on it.

Patient questions can be difficult for doctors too.  We’ve been trained to prescribe treatment, and it’s a shift in our role to also be considered as a guide. To get a sense of how things are changing for doctors, read this thoughtful essay from Dr. Carolyn M. Clancy, the director of The Agency for Health Research Quality (AHRQ).

AHRQ is a federal agency within the US Department of Health & Human Services.  Established in 1989, the mission has been to improve quality, safety, and effectiveness of healthcare for all Americans. There is a wealth of information on the AHRQ site, including a list of  Questions To Ask Your Doctor, and a series of patient and clinician videos explaining why it is important to have these conversations.

3.  Ask for patient decision aids. There are many documents and videos of illnesses and treatments available. Here are some links to helpful patient decision aids:

• AHRQ has developed an Effective Healthcare Program (ECP) with a series of Patient Guides
• The Informed Medical Decisions Foundation has been working to advance Shared Decision Making, as it is called, for twenty years. They have developed over 30 patient guides, found here.

There are also many patient advocacy groups that have developed aids for particular disease. Most of these groups are not-for-profits with a mission to help benefit patients and promote research for new treatments. It’s worth asking your healthcare provider about specific patient advocacy groups, as well as doing an internet search to see if there is a national or international agency representing your disease.

4.  Co-ordinate your own care. Keep records of your tests, prescriptions, and treatments. Consider an electronic health record.

5.  If you have a chronic condition, help yourself to stay as well as you can.  Brownlee presents data that supports the notion that hospitalization can make you sicker. Find out the natural history of your disease, what leads to hospitalization, and do what you can to stay well and out of hospital. Join a patient group, perhaps run by your advocacy group, to help you learn how to manage your illness.

Taking these steps can help you get started with navigating the health system.  Whether you have a new diagnosis or have known about your condition, it’s never too late to start asking questions and get more involved in your care.