Patient Activation—Achilles’ Heel of Healthcare Reform?
The chronic care model of disease is based on the notion that applying effective medical therapy over long periods of time will reduce morbidity and delay mortality. But practicing physicians know that any therapy is valuable if, and only if, the patient actually does it. I often tell patients I have no medicines that will work from the pill bottle—they have to actually swallow them to get any benefit. In the politically incorrect days of my youth this was known as the problem of patient non-compliance. My first real world encounter with non-compliance was as an intern working in the Emergency Room. Venereal diseases was a common diagnosis for which one could either give a prescription or an intramusucular injection of penicillin. Experience showed most prescriptions ended up in the trash can outside the front door to the ER; if you wanted to be effective the patient had to walk with the antibiotic in their gluteus maximus.
My first efforts at continuous quality improvement in the dialysis unit focused on issues that we could control directly, (CQI 1992), but then expanded to things that were controlled by the patient, (CQI 1996, EBM in the Dialysis Unit.) As part of the process, I undertook an extensive literature review of compliance, which by then on had come to be termed patient adherence. I even got into some of the psychological concepts that predicted what patients were prepared to do—concepts such as “self efficacy” and “health literacy.” It became clear that a lot of the terms were overlapping, and were not defined in an easily measured way, so I decided to see if I could develop a measure specific to our dialysis population.
First, we examined phosphorus control. Phosphates are widely used in food preservation, accumulate in patients with renal failure, and can lead to severe morbidity and death. Dialysis therapies remove some of the phosphate load, but the mainstay for controlling this problem is to have the patient take phosphate binders with every meal. We monitor success by tracking the percentage of patients who are in the target range in any given month. This is the unit’s “clinical performance measure.” In a good month we can get to about 50%, and most of those out of range are high. The question of interest, though, is how well the patient did over time. Here, we found that fewer than 10% of our patients were at goal for more than 9 of the 12 measures, and about 15% were never at goal. The rest fell some place in between.
We also examined longitudinal performance of other clinical performance indicators such as interdialytic weight gain, blood pressure control, and hyperkalemia. Each of these mostly reflect patient, as opposed to provider, behavior. Each indicator demonstrated a range of behavior, but there was also very little correlation between indicators. A patient might do poorly on weight gain, for instance, but do well on phosphate control and potassium. Even combining scores did not reliably work, and the math involved was tedious. I gave up trying to develop an indicator of adherence.
Our primary effort to improve unit performance, which we can measure, is based on what I would call the educational hypothesis. If we could provide adequate education, in a patient-specific, patient-sensitive way, then the rationale for our recommendations would be understood and patients would “adhere” to their treatment plans more completely. In the literature this comes under the rubric of improving health literacy.
Over the years we have developed a veritable library of teaching materials we rotate on a three year cycle, have developed contests, and promoted patient champions. We also routinely ask patients as part of the care plan process if they are willing to work on improving their performance. The unit level of performance has not shown any significant change in more than 10 years, despite the vast effort undertaken. So why do we still do it? I remember once one young nurse asked: “Why do we spend all this time teaching? It does not seem to make any difference to what they do.” My answer was that it depended on what she thought she was communicating. If the issue was the subject of the session, then it probably did not help much. If she understood that it was a way to communicate to the patient that we cared about how they did and wanted them to do the best they could, then it was effective. Ignorance is not bliss, but education is not a sufficient answer.
In an article in the Wall Street Journal for May 29, 2014, Laura Landro wrote an article titled “How Doctors Rate Patients.”
More hospitals, health plans and employers are scoring patients on how engaged they will be in their care using an assessment called the Patient Activation Measure, or PAM. Scores make it easier to customize information, coaching and other interventions. The aim is for patients, rather than feel overwhelmed by instructions, to become confident that they can change their own behavior.
The Patient Activation Measure is a carefully developed survey instrument published in 2004, and now licensed for commercial use. In the original research paper, the authors pointed out that patient activation appeared to be developmental. They described a hierarchy of four stages: belief in the importance of the patient’s role, confidence and knowledge necessary to take action, actually taking the action, and lastly, staying the course even under duress. They found linkages between the score and the likelihood of the patient engaging in “healthy” behaviors.
In a 2012 study data were reported on 25,047 insured primary care patients who had taken the PAM questionnaire and for whom clinical and utilization data were available. They were a subset of the 183,051 adults covered by the insurance plan. They found that higher activation scores were associated with some, but not all of the 13 clinical indicators studied. The authors point out this was a cross-sectional study, and does not address the question of whether or not activation levels can be increased in a sustained way nor whether this leads to better outcomes and lower costs. In a 2013 review by the same authors, they note:
There is a growing body of evidence showing that patients who are more activated have better health outcomes and care experiences, but there is limited evidence to date about the impact on costs. Emerging evidence indicates that interventions that tailor support to the individual’s level of activation, and that build skills and confidence, are effective in increasing patient activation. Furthermore, patients who start at the lowest activation levels tend to increase the most.
Patient activation has ramifications at the more global level of healthcare reform. In a 2008 survey, Hibbard and Cunningham used the PAM to survey to study self-reported behavior in about 15,500 adults, where the survey response rate was 43%. They found the highest level of activation at 41.4%, but 25% of the survey respondents were either unengaged or minimally engaged. As they note:
From a policy perspective, this represents a serious challenge, with limited evidence and few strategies available to achieve this end. A first step is to understand what it means to be activated and engaged and the current extent of activation in the U.S. population…
There is a substantial amount of variation in activation levels across the U.S. population. Those who are younger, more educated and have higher incomes tend to be more activated (see Table 1). Similarly, those with private health insurance tend to have higher activation than those with Medicaid or those with only Medicare. Racial and ethnic differences in activation are also apparent, with Hispanics having much lower activation levels compared with other groups…
Most of the differences in activation by education, race/ethnicity, age and insurance coverage remain after controlling for other characteristics. The one exception is that income differences narrow considerably after controlling for education, meaning that most of the income difference in activation reflects differences in educational attainment that are correlated with income…
However, the adjusted activation scores indicate that after accounting for differences in health status, obesity and other characteristics, people with multiple chronic conditions tend to have higher activation scores compared with those with only a single chronic condition. All other things being equal, having multiple conditions may necessitate greater self-management and more careful monitoring of one’s own health. Moreover, health care providers may be more proactive about teaching self-management skills to patients with multiple conditions.
To some extent, activation reflects the degree to which one feels “in charge” of one’s own health. People with more resources in the form of education and income score higher on the activation measure, while people who have experienced repeated failures in their ability to manage their health, such as those who are obese or who smoke, score lower.
Certainly, I find it easier to provide medical care for patients who are highly activated, but the question remains: can levels of activation be increased and sustained in ways likely to impact health outcomes? They published data suggest it is possible to take patients from level 1 or 2, to level 3—they know enough to be able to participate, but my experience makes me skeptical that our current approaches move patients to level 4, and even if there, that it will help them sustain the effort in the face of difficulties and failures.
So what else can we do? During the managed care experiment in the mid 1990’s, Proctor & Gamble sent a research team to meet with our group to study what made for a successful doctor-patient relationship. They started the meeting by telling us their story about developing the Swiffer® mop based on market research. When the conversation turned to patient activation, which I called motivation, I suggested the most useful thing they could do would be to use their talents in persuasion and advertising to help persuade people not to “biggie size” their fast food. I don’t think they could find a profit angle to the suggestion. I do know that physicians work retail. We may be able to help the occasional patient do better than they would left to their own devices, but we have no real insight into motivating populations of people to change behavior in a health direction. Patient activation will remain the Achilles’ heel of both the chronic care model and the prospect for improving the value proposition in health care.
25 June 2014
 Our local health department physician has a cadre of visiting nurses he uses to track down and monitor those patients needing chronic medications for conditions such as TB and HIV, and I don’t know if this is still the standard approach or not—I don’t deal with the issue these days.
 Hibbard, J. H., Stockard, J., Mahoney, E. R., Tusler, M. Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Activation in Patients and Consumers. Health Serv Res Aug 2004:39 (4, pt1):1005-1026; doi: 10.1111/j.1475-6773.2004.00269.x. Accessed 22 June 2014 at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1361049/pdf/hesr_269.pdf
 http://www.insigniahealth.com/ 22 June 2014.
 Greene, J., Hibbard J. H. Why Does Patient Activation Matter? An Examination of the Relationships Between Patient Activation and Health-Related Outcomes. J Gen Intern Med 2012;27(5):520-526; doi: 10.1007/s11606-011-1931-2. Accessed 22 June 2014 at
 Hibbard, Judith H., Greene, Jessica. What the Evidence Shows About Patient Activation: Better Health Outcomes and Care Experiences; Fewer Data on Costs. Health Affairs 2013;32(2):207-214.
 Hibbard, J. H., Cunningham, P. J. How Engaged Are Consumers in Their Health and Health Care, and Why Does it Matter? Center for Studying Health System Change, Research Brief 8, October 2008. Accessed 22 June 2014 at http://www.hschange.org/CONTENT/1019/1019.pdf.
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