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.

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  • Carolyn Thomas

    Thank you Jessie for this important message, beautifully captured in such common sense language. If health care professionals cannot agree on the validity (or not) of current studies, what hope does the average patient have in keeping up?

    That’s why I like Gary Schwitzer’s “Health News Review” site, particularly this useful resource, “Tips For Understanding Studies”:

    But even armed with Gary’s useful help, however, it still leaves the onus on frequently overwhelmed and exhausted patients to assess emerging research – and (far trickier!) the way media covers what is often proved to be non-news.


  • azmd

    The bottom line is that insurance companies, and the government, are tired of paying for medical care that they see as being related to “unhealthy choices” made by U.S. citizens, and they are going to figure out a way to force all of us (physicians and patients alike) to comply with their demands that we all document efforts (preferably successful) to get U.S. citizens healthier.
    Larger, and arguably more important infrastructural and cultural forces that drive our ill health are less of a focus, as they tend to be supported by powerful special interests (the food lobby, the oil lobby, the pesticide lobby, the tobacco lobby, the alcohol lobby,) and those who are unwilling to raise tax dollars to pay for the social safety net that has been proven to have a very close association with markers of health in other developed countries.

    • LeoHolmMD

      Agree. “The government” would be wise to look inward at it’s relentless contributions to poor health in this country instead of blaming the victim.

    • Dr. Drake Ramoray

      “These are the seven challenges I set forth Tuesday night — to strengthen our families, to renew our schools and expand educational opportunity, to help every American who’s willing to work for it achieve economic security, to take our streets back from crime, to protect our environment, to reinvent our government so that it serves better and costs less, and to keep America the leading force for peace and freedom throughout the world.

      We will meet these challenges, not through big government. The era of big government is over……”

      In 1996 after the Republicans regained the House in large part to the response of the Clinton healthcare plan, Bill Clinton said the era of big government is over.

      I contend with the passage of the ACA that the any sense of the possibility of a small government is over (Technically the Roberts ruling which technically states the government can really mandate anything if they call it a penalty…. er… tax.. There is a reason that Joe Biden famously told President Obama that the passage of the ACA was a big F#$ng deal. One of the intended consequences of the ACA is that it turns a constituency generally in favor of a small government, physicians (at least those who don’t belong to the AMA (which is 80%) and those that don’t work in the ivory towers) into a statist big government constituency. While what has passed in this country is not the same as the NHS in Britain, after the passage of the NHS in the UK there has never really been a strong force for smaller government in the UK. It is now largely focused on who can run the government better.

      Once the government controls healthcare, or in the case in the US through crony capitalism controlling the insurance market and hospitals, that group of individuals who favor small government now see their livelihood directly dependent on the outcome of patients which is largely dependent on lifestyles.
      Once this occurs over time doctors (may take a generation or so, just read the posts on this blog by any medical student or resident) become in favor of big government initiatives. Ban cigarettes, ban soda, tax soda, tax sweets, ban certain soda sizes. Now these social ills (an expression of freedom, albeit with unhealthy consequences when not consumed in moderation) suddenly become a focal point to the pay of doctors. This effect is magnified in an actual single payer or nationalized system as it directly effects expeditures and taxes (as directly would the salaries of physicians in the latter example).

      Once the government controls healthcare, even if through proxy of the private insurance company, basically everything becomes a health issue and is thus subject to regulation. Throw in what is going on at the border and the potential for amnesty, and any semblance of small government is over. This doesn’t even take into account that I remain a believer that the ACA was never supposed to work and is really a stepping stone to single payer.

      That being said, I think a relatively large government and a very broad safety net can be a relatively effective form of government. Germany, Norway, Sweden, the Netherlands, Australia, and New Zealand are all proof to certain degress that this is the case. However, the one thing all of those countries have in common are closed borders and a relatively homogeneous population. There is no current crisis of 11 million illegal immigrants and thousands of unaccompanied minors flooding those borders. There are over 2x the people living in the state of New York than the entire country of Sweden. All of these countries have some sort of immigration score (speak the language, have a skill, healthy (recall my several postings of a man deported from New Zealand for being obese)) in order to gain citizenship or residency status.

      I have posted on this blog several times that I am beginning the pre-liminary steps to emigrate to New Zealand (more as a safety valve at this time). This isn’t because I don’t have faith in government. I don’t have faith in the US government. It does absolutely nothing efficiently. It can’t even care for our Veterans and we increasingly cede control of our healthcare to this government. Now I know many will cite the corrupt administrators, and a few bad apples at the top in the VA system (if you want an idea of US government run healthcare with the highest motivation really, to serve our veterans). Seriously, you think that hospital CEO’s are any less scummy?

      I give you exhibit A: (R) Rick Scott. The current governor of Florida.

      Healthcare in the US is falling under the control of politicians and a handful of wealthy CEOs. We will have the worst of both worlds for healthcare in this country. It’s going to be miserable (maybe not as much in a direct pay practice) as a physician and some day I will be a patient in this wretched system too. A system where I will be a treatment goal and be but small portion of my healthcare providers “management” of his population. If I’m gonna have my healthcare controlled by a handful of people that aren’t my doctor, I’d rather have it done somewhere where they have some semblance of a functioning system.

      The era of any semblance of small non-intrusive government in the US is over.

      • EmilyAnon

        If all the good American doctors make good on their threats to emigrate, don’t be surprised if your loyal patients hop on the medical tourism bandwagon to find you. I know I would with a couple of my treasured doctors.

      • Margalit Gur-Arie

        Bill Clinton said all sorts of stupid things, and this was one of them.
        When I read through your post again, I got this feeling that something doesn’t quite add up for you, and the reason it doesn’t add up is that it’s not the size that matters… of government that is :-) It’s about quality. We need good government, large or small or Goldilocks’s size.
        It’s not the politicians that are taking over health care. It’s big corporations that took over the politicians, and through them they now control everything, health care included.
        Politicians are basically servants. Once upon a time, they were largely public servants. Now they are corporate servants. And we will all be turned back into the serfs we used to be before the glorious flash in the pan we call the American experiment, unless we do something…..

        • Karen Ronk

          Yes, history will repeat itself. If you look at the conditions leading up to World War I, nothing much has really changed. The problem is as much about apathy and self-obsession as it about the “evil empire”(governments, corporations, etc.). Most of our fellow citizens won’t put down the electronic devices long enough to actually see how horribly wrong everything is going.

          • Margalit Gur-Arie

            It’s the “opium for the masses” thing again. Where we were once controlled by the fear and promise of the afterlife, now God is in the Internet, and it comes complete with high priests, fiery preachers, canons and much subtler, but equally effective, inquisitors….

        • Dr. Drake Ramoray

          The comparison of big vs. small government while imprecise is still useful (particularly with the provided quotes surrounding previous attempts at healthcare reform) to illustrate that the passage of ACA. I don’t dispute the government working for the big corporations and that is indeed a huge part of the issue. ACA doesn’t lower costs, it mandates I buy a private product from a big corporation.
          “The mandate fundamentally changes the relationship between citizens and the federal government” – Anthony Kennedy

          “The two enemies of the people are criminals and government, so let us tie the second down with the chains of the Constitution so the second will not become the legalized version of the first.” Thomas Jefferson.

          Yes, I’m looking for a goldilocks government, and this certainly isn’t developing into one. Heck, I wouldn’t have been able to marry my current spouse until after 1967 in many states.

          My definition of freedom. The gay married couple can defend their marijuana plants from criminals with their fire arms. Not a terribly popular philosophy in this country.

          • Margalit Gur-Arie

            I do agree that the “mandate” was ill conceived and that the law does little to serve the people. It may contain costs eventually, but only through reductions in both quality and (proper) utilization. We are going to eventually pay less, for much less.
            The problem is that the “chains of the Constitution” are slowly being shifted from protecting the people to protecting Corporate Lords (criminals), and frankly, this is our collective fault. The very least we could do is go out and vote, but barely half of us bother, and even less than that are making truly informed choices at the polls. Makes one wonder if democracy is a sustainable form of government….

          • Dr. Drake Ramoray

            You correctly interpreted my rationale for posting the two quotes spoken some 200 years apart in the same reply.

      • DeceasedMD

        Pretty sad state of affairs. I would say we will have the Walmart of Medicine in the not too distant future. Especially with the new law passed making it easier to practice across state lines. Telemedicine is here to further dumb down the profession and there seems to be no limits in Corpmedland of what they will do.

    • DeceasedMD

      good point and laughable if it weren’t so sad. They are too afraid to go after the real problem so they manage it in this crazy ineffectual regulated way that sucks the life out of medicine. The fact that wall street is backing up urgent care centers which are thriving is also killing off the doctor pt relationship as if the PCP cannot take on that role as previous. (NY Times today)

  • Acountrydoctorwrites

    Well said. Time to stop listening to public health “experts” who tell us to drink 6-8 glasses of water and so on. Avoid excess in anything. Don’t eat artificial highly processed “foods”. Be physically active without worrying about how many minutes. And don’t worry yourself silly about details we won’t know until afterwards.

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