Identifying Barriers to Patient Engagement

    • March 22, 2013

Imagine the following: A woman is diagnosed with early-stage breast cancer and faces a choice between the surgical removal of the malignant lump followed by radiation, or the removal of her entire breast. Both options are valid, but each carries its own mix of risks and benefits.

What should she do? In practice, providers often determine the patient’s treatment. But many in the health care community argue that the patient should have at least an equal say in the matter. The patient is the one, after all, who has to live with the consequences.

Shared decision-making is an approach for engaging patients in making choices about their care when there is more than one medically valid option for treatment. Such care is a tenet of a growing movement for patient-centered health care and has been shown to increase patient satisfaction and reduce costs associated with unnecessary and unwanted care, according to Dominick Frosch, PhD, a Robert Wood Johnson Foundation (RWJF) scholar who is a fellow at the Gordon and Betty Moore Foundation’s Patient Care program.

But there is a problem: Patients don’t always have the information they need to make fully informed decisions about their care. Research has shown that decision aids, often in the form of DVDs and booklets, can help, but how do patients access these aids?

Getting the right medical information to the right patient is harder than it sounds, says Frosch, an alumnus of the RWJF Health & Society Scholars program (2003-2005) and recipient of an RWJF Investigator Award in Health Policy Research (2006). He conducted a recent study that found that certain interventions designed to encourage the distribution of decision aids to patients in primary care had only limited success.

“The rates of distribution that we observed overall were more modest than what we were hoping for,” Frosch says. The study was published in February in Health Affairs, a leading health policy journal.

For the study, Frosch and his colleagues worked with five primary care practices in Northern California from January 2010 to June 2012. The interventions included training sessions and lunch presentations for physicians and staff about the importance of providing decision aids to eligible patients; small rewards to incentivize distribution of the aids; and the placement of promotional brochures and posters in clinic entrances, waiting areas, and exam rooms to draw patient attention to the availability of decision support.

But despite extensive promotional efforts, only about one in 10 eligible patients actually received a decision aid over the course of the study, findings showed. Even though most of the decision aids that were distributed were for patients with back pain and colorectal problems, just 10.7 percent of patients with back problems and 9.3 percent of patients with colorectal problems received decision aids.

The “results indicate that these tactics have only limited power” to improve distribution rates of decision aids, the authors write.

The vast majority of physicians supported the use of the aids and shared decision-making in general, but physicians were responsible for distributing relatively few—only 27 percent—of the aids to their patients.

One key reason for the low distribution rates, physicians said, was a lack of time; more than four out of five physicians studied said they simply did not have enough time to hand out decision aids. Ironically, those physicians who did distribute the aids said it actually saved them time because they didn’t have to spend as much time explaining clinical options to patients.

But lack of time wasn’t the only reason for the low physician distribution rates. Some doctors appeared to feel that patient input was not truly warranted or wanted; some had difficulty shifting away from physician-led decision-making; some appeared to misunderstand the objective of the decision aid in facilitating shared decision-making; and others reported a lack of familiarity with the contents of the aids, despite considerable efforts to familiarize doctors with them.

Clinic staff were more open to distributing aids and took more responsibility for distributing them (accounting for 73 percent of the aids that were distributed). But they often appeared to be hindered by a lack of organizational support for distribution of the aids, the study found.

The study reveals large cultural and structural barriers to the distribution of decision aids and to shared decision-making in general, but Frosch and his colleagues caution against abandoning the goal and offer several suggestions to reach it. Physicians, they write, need better training in shared decision-making and need to engage in team-based practice models, and clinic administrators should implement quality measures that assess and reward patient engagement in determining their own treatment plans.

The largest barrier, however, is the misalignment of incentives, Frosch says. The prevailing fee-for-service payment structures mean that a physician doesn’t get paid if a patient opts against a particular procedure. “We need better incentives that signal that engaging patients in making informed choices is something we value.”

Read the study.
Learn more about the RWJF Health & Society Scholars program.
Learn more about the RWJF Investigator Awards in Health Policy Research.
For an overview of RWJF scholar and fellow opportunities, visit