The effort it takes to become an engaged patient

Heard these?

Media-fueled flip-flops and research breakthroughs on lifestyle and health behaviors are wearing down my usual patience with the provisional nature of science. Even simple dietary recommendations like lower fat/salt recommendations have become complicated as old truisms are overturned by new evidence. All too often the latest findings seem to reveal my efforts to shave preventable risks and extend health as futile, giving serious support to the joke question about whether vegetarians live forever. (“No, it just feels like it.”)

There is a growing demand from the public health and prevention community to decrease the prevalence of chronic disease and disabilities attributable to bad habits and unhealthy choices. Simply telling us not to do something hasn’t worked. Especially when the “don’ts” are so frequently later changed to “shoulds.” Clinicians are swamped by the demands of short visits oriented toward solving acute problems, not toward prevention and certainly not toward helping us design and stick to reasonable goals for healthy behaviors.

So I’m asking: To whom should I turn for meaningful guidance about modifying my risk for illness and boosting my health?

I ask this as someone who just read that physicians and nurses don’t study nutrition as part of their training and who now understands why many of them are reluctant to discuss any but the most general dietary recommendations: Their knowledge may not exceed my own.

I ask this as someone without any special diet or lifestyle concerns who generally prefers to follow mainstream, evidence-based advice with regard to both disease prevention and extending my years of cognition, mobility and strength.

I ask this as someone who — like most Americans — can’t access a practical epidemiologist familiar with the topic and the literature relevant to any new findings whenever big new studies are released to ask whether I should relax more, change my exercise routine or increase my brain training.

I ask this as someone who spends more time than the average person reviewing how poorly science is communicated to the public by the media and who does often seek out and read the original research but who still struggles to put even huge, well-conducted, population-based studies into a useful, personal context.

Those of us concerned with patient engagement are pretty good at identifying the specific institutional and informational barriers we face in actually making the most of health care services that can help us prevent and cure our diseases: We can’t get comparative quality and price information about clinicians and institutions; our medication labels are written with impenetrable abbreviations and acronyms; our doctor snaps at us for asking the same question twice, etc.

Focusing on these demanding, discrete tasks sometimes makes us forget that similar barriers exist to the seemingly simpler chore of making use of scientific knowledge about diet, exercise, sleep, stress and substance use.

So, what are the best recommendations for health behaviors that will prevent undue harm for ourselves and our family members?

  • Are there priorities among these recommendations?
  • How do I know when they change in a meaningful way? Do I have to pay attention to every new exercise study about minimum duration and intensity required for fitness that is reported in the media?
  • Do these recommendations need to be personalized for me? How do I know? If they do, who will do this with or for me?
  • What sources of expertise can I trust, both among my clinicians and within the vast forest of websites and apps from which I can now choose? How much do they cost? Which are most effective?

Merely finding the answers to these questions is sure a lot of work for all of us, whether we are currently actively involved with our health care or not. Acting on what we learn requires even more.

There is an expectation floating around out there that we are all going to become more engaged in our health and health care as more is known about what we can do for ourselves. Being an engaged patient, however, generally focuses on the challenge of untangling the complexities of modern health care delivery. It is easy to forget the far more significant and omnipresent tasks related to engaging in our everyday health to build health-related habits, maintain them and modify them as the science, the sources of science and the effective science-based interventions change.

Let’s not underestimate the earnest effort that it takes for each of us to make use of the best available knowledge about behaviors that can increase our chances of living for as long and as well as we can.

Jessie Gruman is the founder and president, Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs at the Prepared Patient blog.

View 14 Comments >