U.S. Health Care System Not Built to Foster Informed and Engaged Patients

Before we bid farewell to an eventful year dominated by the rollout of the Affordable Care Act, our Health Forward associates take a look back at significant events and projects and share their insights about the year 2013.

On day seven of our year in review, Health Forward Vice President Rhonda Holman reflects on the challenges for patients to be stewards of their health.

“What is your potassium level normally?”

This, from the advanced practice nurse during an appointment. If I hadn’t been so surprised by the question I would have asked her the same question, just to see if she could answer. I sure as heck couldn’t.

Before going on let me be clear about one thing: I am grateful down to my bone marrow for the medical care that I received and for the health insurance and the support of good friends that pulled me through my second bout with non-Hodgkin’s lymphoma. I know that I am one of the lucky ones.

But the experience showed me how far we have to go before we become the knowledgeable stewards of our health that most of us want to be and that health insurers and providers tell us we should be. I also saw how far the health care delivery system has to go if it is to help us become those knowledgeable stewards, and then interact constructively with us afterward.

When I reflected later about the nurse’s question about my potassium level, I couldn’t help but think about health literacy and the gap between what the health delivery system often asks of patients and patients’ abilities to meet those demands.

I had next to no knowledge of my blood chemistry before starting the blood marrow reinfusion process. And none of the many health care providers I had dealt with to that point told me that such information might come in handy, just in case a provider needed a baseline for comparison. So when the question came, I couldn’t answer it. I still wonder where that conversation might have gone or whether my treatment program might have changed if I’d been able to provide the information.

There were other times when I found myself in that health literacy gap, like the time when I filled a prescription for a liquid medication that came with a measuring device. The device was marked in different units than my dosing instructions called for and the packaging didn’t include conversion instructions.

Another memorable moment came at about 11:30 a.m. one Monday after I had completed my morning appointment. The nurse cheerily explained that she would probably be gone by the time we returned for my second appointment that afternoon. No one had prepared me and my indispensable home care team for the week of “split-shift” appointments. Fortunately, my caregivers for the week were able to accommodate the twice-a-day schedule. Other examples involve collection and handling of specimens. TMI for our purposes here.

We hear a lot about being better patients and health care consumers; but our health care system wasn’t built to foster and accommodate better-informed and highly engaged consumers. My first inkling of this came about 30 years ago when I requested copies of my medical records from a provider. I was told that the records were the physician’s property and that I could have copies only if the doctor allowed it!

I’d love to purchase health care as thoughtfully as I buy cars. But where is the Blue Book or the Consumer Reports ratings that I can consult when I am faced with choosing a provider? Where am I supposed to get the education I need to become a better steward of my health?

I’ll bet that most providers would like to help us get better at taking care of ourselves and using system resources; but where do they get the time and payment for this underappreciated aspect of health care?

Like most patients, I know I have to shoulder my part of the work to maintain good health. I want to do that work with providers and within a system that tries to meet patients where we are, not one that asks more of us than we know how to deliver or one that wants us to show up, shut up and pay up.

Health Care

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