‘Patient Activation’: Real Paradigm Shift or Updated Jargon?

By Jacob Molyneux, AJN senior editor

I attended a Health Affairs briefing yesterday in Washington, DC. Based on the February issue of the journal, it was called “A New Era of Patient Engagement.” A lot of research money appears to have been flowing to this area in recent years.

Our January article on "Navigating the PSA Screening Dilemma" includes a discussion of 'shared decision making'

Our January article on “Navigating the PSA Screening Dilemma” includes a discussion of ‘shared decision making’

The basic idea isn’t entirely new to anyone who’s been hearing the term “patient-centered care” for a long time: as Susan Dentzer writes in “Rx for the ‘Blockbuster Drug’ of Patient Engagement,” a useful article summarizing the main ideas raised in the Health Affairs issue: “Wherever engagement takes place, the emerging evidence is that patients who are actively involved in their health and health care achieve better health outcomes, and have lower health costs, than those who aren’t.”

One might add to these projected benefits: better experiences as patients.

Something’s got to change, so why not this? If many nurses feel they’ve heard all this before, the sense of a health care system in necessary flux is particularly acute right now, with mounting pressures from an aging Baby Boom generation with its full complement of chronic conditions, not to mention federal budget constraints and the influx of patients expected from the Affordable Care Act. It’s unlikely we’d be talking so much about patient engagement if we weren’t facing, perhaps as never before, the need to do something about the glaring gap between costs and quality in the U.S. health care system.

Patient activation. A term that got a huge amount of use at the briefing was “patient activation.” Hibbard and colleagues define it thus, in an article on the the evidence for cost reductions associated with patient activation: “understanding one’s own role in the care process and having the knowledge, skills, and confidence to take on that role.” Some examples of patient activation they cite are patients with type 2 diabetes performing regular foot checks and keeping a glucose diary, or patients who regularly exercise and get relevant screenings.

Don’t write off certain type of patients. Many of the presenters emphasized that it’s important to see patient activation as a possibility for every patient, whatever their socioeconomic level, disease severity, or cognitive limitations. As Hibbard put it, “there are more or less activated patients in every demographic.” Providers need to meet patients where they are and, as Marion Danis put it in an article on the ethical justification for getting patient activation right, set goals and have realistic expectations.

The physician problem. Many presenters noted that, without support from the health care system, individual efforts may not make much of a difference. In addition, physician resistance was mentioned repeatedly, whether attributed to their lack of time, their skepticism, or the overly common belief that more expensive care is always better. Bernabeo and colleagues observed that even those physicians who advocate shared decision making may not always engage in it. Their article on necessary competencies posits four crucial elements for true patient engagement: system support, providing patients with decision aids, collaborations and teamwork (can anyone say nurses?), and new reimbursement models.

Lin and colleagues, in looking at efforts to distribute decision aids in primary care practices, also noted physician-based problems with furthering patient activation, discovering that physicians

  • didn’t see a role for patients in their own care.
  • believed they lacked the time to give them decision aids.
  • didn’t see a potential benefit in doing so.

They also found, again unsurprisingly, that clinical support staff embraced the concept far more than the physicians did.

The only actual patient voice I heard firsthand was that of Jessie Gruman, whose Twitter feed AJN already follows and whose article “An Accidental Tourist Finds Her Way in the Dangerous Land of Serious Illness” describes her own experiences navigating treatment decisions and recovery after her fourth cancer diagnosis. She admits that she “found it challenging to be an engaged patient” when she was feeling ill and even sometimes skipped chemotherapy, despite all her own expertise in evidence-based medicine. As she eloquently put it, “we constantly weigh demands of caring for ourselves” against other priorities in our lives. One detail that stood out was the perfunctory nature of discharge information she was given after having surgery for stomach cancer at a leading hospital, as well as the very different types of surgery that had been recommended by different surgeons.

And there were many other presentations, including some on the hot topic of decision making as it relates to end-of-life care, an area that brings into sharp focus many of the issues associated with patient engagement or the lack thereof.

Tell us what you think. What’s being done to ‘activate’ patients at your hospital? Is patient activation more than just the buzzword? What’s your take as nurses and patients?

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Senior editor/social media strategy, American Journal of Nursing, and editor of AJN Off the Charts.


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  2. Shawn Kennedy February 13, 2013 at 8:04 am

    So I guess “clinical support staff” includes nurses. A shame there was no nurse among the presenters. Amazing that organizers don’t see nurses as having anything to do with patient engagement!

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