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4 key measures of patient engagement

When faced with a health system that is both remarkable and flawed, patients need more than the ability to follow instructions

Engagement is a big buzzword in healthcare these days. Every program seeks to achieve it; every provider wants to enhance it. We know that being engaged in our own health can lead to better outcomes.

But what is engagement exactly? Does it mean following a doctor's advice? Does it mean eating five servings of vegetables each day? Or is it more complex?

At Altarum's Center for Consumer Choice in Health Care, we've spent the past 2 years studying dimensions of engagement to better understand how people do and don't take part in health decisions.

We are pleased to announce the release of the Altarum Consumer Engagement (ACE) Measure(TM). ACE is a 21-item survey that measures four separate domains of engagement, each reflecting a different aspect of how a person behaves in health and health care.

Before we describe the elements of engagement, let's start with a hypothetical scenario.

Imagine that every car comes with a standard navigation system. NavExpert has a reputation of being the best navigation system in the world. On any trip you take, you tell it where to go and it finds the address, plots a course, and directs you there with assertive audio instructions.

For the most part, NavEx gets you from point A to point B safely and directly. But sometimes you find yourself at an unintended destination, going the wrong way, or completely lost. All the while, NavEx prompts you to stay on course.

Now suppose you uncover some disturbing facts about NavEx. Ten to 20% of addresses are incorrect. Thirty percent of the stops that it makes are unnecessary. The most efficient route is identified only 55% percent of the time, while 20% of the routes are actually dangerous. Sometimes the system sends you somewhere randomly. Plus, you pay a fee for every instruction given, even if it is wrong. The data guiding the system are almost two decades old. Shockingly, 400,000 people die on the roads due to NavEx mistakes.

Most of us would take the wheel, get a map, and at least double-check the automated voice as we proceeded on our journey.

Or would we?

Those statistics describe the evidence we have about health care in the United States today:

  • Ten to 20% of health conditions are misdiagnosed.[1]
  • Up to 30% of tests and procedures are unnecessary.[2]
  • Physicians follow recommended care processes in about 55% of cases.[3]
  • About 20% of treatments given are contraindicated (i.e., should not have been provided).[4]
  • Half of doctors admit to prescribing placebos to make patients feel as though something is being done for them.[5]
  • It takes an average of 17 years for new, effective treatments to make it into clinical practice.[6]
  • An estimated 400,000 people die due to preventable mistakes in hospitals annually.[7]

So why don't we hear more outrage? Partly because we place so much trust in medicine. From our surveys, a strong majority of consumers believe that their doctors know what they are doing (78%), act in their patients' best interest (76%), and would never recommend a test or procedure that wasn't necessary (76%). Consumers also lack confidence in their own ability to find high-quality care or affect the cost of care (only 10% and 6% are very confident, respectively). They believe in medical science and doubt their own contributions.

We do find that people who have experienced errors are more likely to want an active role in their care. Perhaps one wild goose chase too many gets our attention.

When faced with a health system that is both remarkable and flawed, we need more than the ability to follow instructions. We need the ability to process information about our health, understand our options, and make choices that reflect our priorities.

Using our driving analogy, we describe the four elements of engagement:

  1. Ownership. Do you perceive yourself as having the lead role in setting the course and steering the vehicle? Or do you rely on the navigation system? In health, do you believe you have primary influence over your health and health care decisions?
  2. Commitment. Do you do your best to maintain the vehicle and avoid unnecessary trips in the first place? In health, do you choose healthy lifestyles and consistently take steps to prevent and manage health conditions?
  3. Informed choice. Do you seek and use information about your destination and possible routes before heading out? In health, do you try to understand your symptoms and conditions and find information to help you make choices?
  4. Navigation. Once on the road, are you comfortable questioning the directions that you receive and choosing the route that seems best for you? In health, are you confident in your ability to ask questions, find answers, and figure out how to address your health concerns?

Our experience thus far with the ACE Measure tells us that people vary in their level of engagement in each domain. Each person is unique in their perceptions and abilities.

We aren't merely engaged or not engaged; we are more capable and aware in some areas than others. Some of us take good care of ourselves at home but aren't interested in investigating choices. Some of us are comfortable asking questions of our providers but are not committed to healthy lifestyles.

Whatever the combination, we're convinced that by knowing more about the different aspects of engagement, we will be better able to support consumers in making decisions about the care that they need and prefer.

NOTES

[1] Graber, M. (2013). The incidence of diagnostic error in medicine. BMJ Quality & Safety, 22(Suppl 2), ii21 - ii27.

[2] American Academy of Family Physicians. (2012). Choosing Wisely campaign aims to cut use of unnecessary medical interventions. Retrieved from http://www.aafp.org/news/inside-aafp/20120404choosingwisely.html.

[3] McGlynn, E. A., Asch, S. M., Adams, J., Keesey, J., Hicks, J., DeCristofaro, A., & Kerr, E. A. (2003). The quality of health care delivered to adults in the United States. New England Journal of Medicine, 348(26), 2635 - 2645.

[4] Schuster, M. A., McGlynn, E. A., & Brook, R. H. (2005). How good Is the quality of health care in the United States?. Milbank Quarterly, 83(4), 843 - 895.

[5] Tilburt, J., Emanuel, E., Kaptchuk, T., Curlin, F., & Miller, F. (2008, October 23). Prescribing "placebo treatments": Results of national survey of U.S. internists and rheumatologists. British Medical Journal (Clinical Research Ed.), 337, a1938. doi:10.1136/bmj.a1938

[6] Balas, E. A., & Boren, S. A. (2000). Managing clinical knowledge for health care improvement. In J. Bemmel & A. T. McCray (Eds.), Yearbook of medical informatics 2000: Patient-centered systems (pp. 65 - 70). Stuttgart, Germany: Schattauer Verlagsgesellschaft mbH.

[7] James, J. (2013). A new, evidence-based estimate of patient harms associated with hospital care. Journal of Patient Safety, 9(3), 122 - 128.

Republished with permission of the Altarum Institute.