By Michelle Lowes, MD PhD
So you’ve been feeling unwell for a while, and you finally go to your doctor, who listens to your symptoms, does a physical exam and then says, “let’s do some tests.” She doesn’t give you any idea what your aches and pains might be, but says, “call me for the results in a few days.”
Nervously, you call back and speak to the receptionist, who tells you the doctor is busy and will call you back later that day. You wait for the call, which comes when you are in the middle of a meeting, so you can’t pick up. You call back again. When you finally stop playing phone tag, your doctor tells you, “Well, the lab tests are in, you have panosis .” She starts to tell you what panosis is and how it’s treated, and she will call in a prescription at your local pharmacy.
However, you are still trying to digest that you have panosis, and you are really not listening at all. You say “thanks” and hang up, bewildered, scared, anxious. You immediately google panosis, and check out the online medical sites you find, and all the worst cases and pictures pop up. You think you are going to be in for an awful time, your heart is racing, you imagine the worst….
Has this ever happened to you?
Perhaps you were sitting in the doctor’s office when you heard the diagnosis, and even though that’s a bit better than being on the phone, you still couldn’t listen to what she was saying, and you left upset and confused … You have lots of questions, firstly, what is panoisis and how is it treated? Even though you were nodding as you were listening, you really didn’t hear anything your doctor told you.
I’ve been thinking a lot lately about how patients navigate the medical world. There’s a lot of information out there, but you have to find it, read it, and understand it all. I’m a doctor, and the first thing I would do is find a specialist who treats panosis. I’d go to PubMed and research the medical literature on panosis. I’d pull down reviews and recent studies and weigh my treatment options. I’d probably get a second opinion. I know what questions to ask and I can deal with the medical jargon. I would even ask to see the lab results and go over them myself and discuss with colleagues. I can work out the limitations of the tests, what being outside the range of normal means. But I doubt that my approach is what most people could or would do.
How do doctors make recommendations about treatments? In med school, I learnt lists of possible treatments for any given disease from textbooks. Then, after graduation, doctors read journals and go to medical conferences. But keeping up with new treatments takes lots of time, as there are thousands of scientific articles published monthly.
I think we need to explain more about diseases and treatment options in ways you can understand so you can be involved in the process of choosing the course of treatment. We need to be more scientific in our recommendations and use “evidence-based treatment” (EBT) guidelines whenever we can. We need to remember: “First, do no harm,” rather than simply reaching for treatments we’ve used in the past or the next new thing.
I believe it is in the interests of patients to be involved in this process- to be empowered to participate in and make your own health decisions. You should be able to find credible information on your new diagnosis, the natural history of your disease, and the pros and cons of various treatment choices.
With health insurance structured as employer-provided plans in this country, we often have no idea of how much a particular treatment choice will cost. There has not really been any need or incentive for us to know this information, and there is no “invisible hand” of the market place at work to keep costs down. However, with the coming of Health Savings Accounts, individuals may be able to have more say in how their health dollars are spent. This is clearly important at a societal level, where medical costs are soaring, and at a personal level, necessary in a country where a common reason for bankruptcy is medical bills.
To add to this complexity, there is so much happening right now to change the very process I’ve described above to make a diagnosis and recommend a course of treatment. Evolving digital technologies, personalized medicine, and social networks are changing how diseases are diagnosed, treatment is prescribed, and chronic diseases are managed.
What resources are out there to help you learn about diseases and make decisions your medical care? What screening tests are useful? How does a drug get FDA-approved for use in patients? What are clinical trials and how you can find and participate in them? How does personalized medicine fit in right now? How do you work out how much different treatments will cost? Over the coming months, I’d like to take this column to explore these issues and questions, to provide you with resources to become more involved in your own health care.
 A fictitious fatal disease that Duncan’s father has, from The Fingertips of Duncan Dorfman, by Meg Wolitzer
These views are the work of individual authors, do not necessarily represent the views and opinions The Rockefeller University, and are not approved or endorsed by The Rockefeller University.