Tuesday, April 7, 2015

The Realities of Patient Engagement

It's pretty simple: If you want people to be engaged in a process, make that process engaging. However, too often doctors believe that just because they have the right answers, that alone should be enough to make patients follow their instructions. This attitude was highlighted in a recent interview with Joseph Kvedar, MD head of the Center for Connected Care, regarding the creation of MHealth, a new patient app that won a $468,000 grant from the Robert Wood John Foundation.
"RWJF is giving Boston-based Partners $468,000 to develop an "engagement engine" that convinces consumers to not only use health and activity trackers, but to keep on using them long after the novelty has worn off1."

When asked about his "biggest fear" with respect to the development of MHealth, Dr. Kvedar said:
"I hope that developers don't assume that what works in the consumer industries can just be applied to mobile health. In healthcare, we can't just "give people what they want." The challenge in healthcare is that, though we know what patients/consumers need to do to improve their health, most of them don’t want to hear about it2."

This sentiment, to me, is an extreme oversimplification of the problem of patient adherence. First, saying "most [patients] don't want to hear about what they need to do to stay healthy" is just bunk. All you have to do is look at the popularity of patient-lead websites and physician-lead websites and TV shows is enough to discredit the idea of "patient non-engagement." Also indicative of patient engagement is doctor appointment attendance rates:
Over 80% of US adults see their doctor at least once a year – the national average is 3 visits/year – double that for patients with a chronic condition. Now what is it about these statistics that “screams” unengaged? Why would so many people who are so “unengaged” spend so much time making and waiting for an appointment to do something they care so little about? They wouldn’t!3

And yet, physicians still encounter significant patient non-adherence.
Medication non-adherence is most simply defined as the number of doses not taken or taken incorrectly that jeopardizes the patient's therapeutic outcome4. NCPIE5 has noted that non-adherence can take a variety of forms, including not having a prescription filled, taking an incorrect dose, taking a medication at the wrong time, forgetting to take doses, or stopping therapy too soon. ...Medication non-adherence is a major public health problem that has been called an "invisible epidemic."6, 7 Non-adherence to pharmacotherapy has been reported to range from 13% to 93%, with an average rate of 40%8. The problem encompasses all ages and ethnic groups. It has been estimated that 43% of the general population, 55% of the elderly, and 54% of children and teenagers are non-adherent9. A host of individual characteristics also influence adherence, such as the patient's religion, health beliefs, social support system, and ethnicity.

So how can these things both be true? How can patients both be engaged with their health and be non-adherent towards plans that will improve their health? Why do doctors experience an average rate of 40% non-adherence across all ages and ethnic groups?

The answer is really quite simple: professionals don't consider patients' input. Just look at what the problem is called: "patient non-adherence." It's not called "doctor miscommunication" nor even "doctor-patient disconnect." No, the fault is placed entirely on patients, as there is (in doctors' minds) no legitimate reasons for patients to not follow given health directions. There is only one right answer: what the doctor recommends. And you're not supposed to "take it or leave it." Patients are just supposed to "take it," regardless of the instructions. If the therapy is too demanding, has too many side effects, is too expensive, or is too scary, that's the patients' problem.

In an environment such as this, when a doctor asks, "Did you do what you were supposed to do?" the only answer is "Yes," regardless of whether or not that is actually true. Answering "No," while honest, is only rife with unwanted repercussions. When given no way to option-out of a doctor's decision, of course patients will say they're complying while behaving otherwise in private. What other option do they have?

Doctors and health technicians need to consider that they're already working at a disadvantage, and that it is their responsibility, as the professionals, to meet patients half-way. "The beatings will continue until morale improves...", is not a model for compliance. Rather, professionals need to realize the fundamental truth that when decisions are very important and highly complex, it is easier to remain inactive than it is to take actions. This irrational behavior towards compliance is true for patients as well as doctors! A study by Redlemeier and Shafir showed that "the difficulty in deciding between... two medications led some physicians to recommend [neither]10." This shows that situations involving choice (and specifically whether or not to prescribe/take a medication) can paradoxically influence people to choose the status quo, even among physicians.

When prescribing a new medication, the average primary care physician spends less than 50 seconds teaching (too strong a word) patients about the medication, e.g. why they need it, how to take it, how much to take, when to take it, indications and contraindications, when to stop and what to do when you stop. That’s not much time for the physician to say everything that needs to be said (which doesn’t happen). Nor does it leave time for the patient to say much. Since most patients are reluctant to interrupt or contradict their clinician, many if not most of the concerns patients have about taking the new medications are never voiced. Rather, patients just go home and never fill the prescript11.

If we want to address this problem, and more to the point, if we want patients to remain engaged with a health app and as a result, become more compliant, patients' concerns must be addressed. It is obviously simply not enough to just instruct. There must be the opportunity for dialogue and understanding on the part of physicians that this is not just a patient problem. Disagreement on the part of the patient should not be seen a challenge to the doctor's authority, rather, if compliance is the goal, doctors should invite patients to raise concerns. Even better would be for doctors to ask direct questions addressing the main reasons cited in the literature for non-compliance12, namely:
Do you agree with the diagnosis necessitating the prescription?
Do you agree the diagnosis is serious enough to merit the doctor's suggested treatment?
Do you believe in the treatment (i.e., believe in taking medication, believe in physical therapy, etc.)?
Can you afford the doctor's recommendations?
Do you believe the benefits of the recommendations outweigh the risks associated with it?
Do you believe the recommendations will work?

And if we want to maintain patient compliance with an app "long after the novelty has worn off," we must look at the reasons for non-compliance at that juncture, and successful practices that keep patients engaged. Thankfully, this is a well-explored subject, and one such health app is already in existence: SuperBetter. SuperBetter is a tool created by game designers and backed by science13, designed to help build personal resilience. That is, the ability to stay strong, motivated and optimistic even in the face of difficult challenges. In other words, higher long-term patient compliance.

We can only hope Dr. Kvedar likes video games.

[1] Wicklund E. Partners looks to make patient engagement persistent. mHealthNews; March 24, 2015 Available at: www.mhealthnews.com/news/partners-looks-make-patient-engagement-persistent. Accessed April 7, 2015.

[2] Wicklund E. Joe Kvedar's quest to personalize health. mHealth; October 17, 2014 Available at: www.mhealthnews.com/news/mhealth-masters-joe-kvedars-quest-personalize-health. Accessed April 7, 2015.

[3] Wilkins S. Is trying to convince people to use health apps they don't want the right approach to patient engagement? Mind the Gap; October 24, 2014 Available at: Is trying to convinve people to use health apps they don't want the right approach to patient engagement? Accessed April 7, 2015.

[4] Smith DL. Patient Compliance: An Educational Mandate. McLean, Va: Norwich Eaton Pharmaceuticals, Inc. and Consumer Health Information Corp; 1989.

[5] National Council on Patient Information and Education (NCPIE). The Other Drug Problem: Statistics on Medicine Use and Compliance. Bethesda, Md; 1997 Available at: www.talkaboutrx.org/compliance.html#problem. Accessed May 8, 2000.

[6] Smith MC. Predicting and detecting noncompliance. In: Smith MC, Wertheimer AI, eds. Social and Behavioral Aspects of Pharmaceutical Care. New York, NY: Pharmaceutical Products Press, Inc; 1996.

[7] Fincham JE, Wertheimer AI. Using the health belief model to predict initial drug therapy defaulting. Soc Sci Med. 1985;20(1):101-5.

[8] Bond WS, Hussar DA. Detection methods and strategies for improving medication compliance. Am J Hosp Pharm. 1991;48:1978-88.

[9] Gladman J. Pharmacists paid to improve drug compliance, persistency. Payment Strategies Pharm Care. 1997; October:4-8.

[10] Redelmeier D., MD and Shafir E., PhD. Medical Decision Making in Situations that Offer Multiple Alternatives. JAMA. 1995;273:302-305.

[11] Wilkins S. Patient Non-Adherence (Like Engagement) Is a Physician-Patient Communication Challenge – Not a Health Information Technology Challenge. Mind the Gap; July 23, 2013 Available at: www.cfah.org/blog/2013/patient-non-adherence-like-engagement-is-a-physician-patient-communication-challenge-not-a-health-information-technology-challenge. Accessed April 7, 2015.

[12] Zolnierek, H. et al. Physician Communication and Patient Adherence to Treatment: A Meta-Analysis. Medical Care. 2009;47(8):826-834.

[13] McGonigal J. The science behind SuperBetter. www.superbetter.com. Accessed April 7, 2015.

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