What is meaningful patient engagement?

"Engagement" can take many forms, not all of them authentic. (Jim Bowen/Flickr)
‘Engagement’ can take many forms, not all of them authentic. (Jim Bowen/Flickr)

Richard Antonelli, MD, is a primary care pediatrician and medical director of Integrated Care and Physician Relations and Outreach at Boston Children’s Hospital. He also co-chairs the Task Force on Care Coordination for Children with Behavioral Health Needs, a group within the Massachusetts Child Health Quality Coalition.

Tools and apps designed to engage children and families in their care are proliferating. But are they meaningful? At its best, patient engagement isn’t just technology that brings lab results and medication reminders to a patient’s or parent’s iPhone. It’s about creating a relationship in which families are able to specify their care needs; clinicians and families learn from each other; and patients and families are able to manage their own care.

Patients and families are not just consumers of health care—they define goals and priorities. Their insights are essential.

A powerful tool for supporting a meaningful family/provider relationship is the Care Map. It was developed by Cristin Lind, parent of a child with special needs, who found herself in the role of care coordinator, managing her son’s many medical and non-medical needs, and navigating the complex web of caregivers and services he requires:

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Care Mapping is a process that guides families and care professionals in collaborative problem solving. The map, with the child at its center, communicates both the big picture and the small details of all of the resources needed to support the child and family. It gives providers an instant understanding of the complexities families contend with, and empowers families to think comprehensively about their “circle of support” and to draw clinicians into it.

That’s meaningful patient engagement. Taken to the next level, Care Mapping has the potential to serve as an ideal platform for care coordination for any patient. It can help to create more effective care plans that avoid duplications or gaps in services, prioritize needs and navigate barriers.

Meaningful engagement seats patients at the table and lets them shape what their health care will look like.

Exciting as this prospect is, meaningful patient engagement is not going to happen spontaneously. Delivery systems need to solicit and embrace this kind of input from families. Care coordination is still emerging as a key set of activities and functions that support high-performing care delivery systems. It generally isn’t taught as a structured set of discrete skills, and reimbursement mechanisms generally don’t support for time spent engaging with patients beyond what’s required for an exam, test or procedure.

Right now, patients and families themselves are de facto care coordinators, and as such, they have much to teach the health care providers. This is especially true for families of children with behavioral health needs—in a recent Massachusetts study (PDF) led by the Parent/Professional Advocacy League, 86 percent of parents said they had sole responsibility for coordinating their child’s mental health care.

What’s called patient engagement can take many forms, but meaningful engagement seats patients at the table and lets them shape what their health care will look like. We’re still far from that vision: A recent survey of 112 patient-centered medical homes, published in Health Affairs, found that while nearly all sought patient feedback, only about one third gave patients a continuing role in quality improvement.

In the same issue of Health Affairs, cancer survivor Jessie Gruman, president of the Center for Advancing Health, calls for explicitly integrating patients and families into the governance structures of health care facilities.

Lind agrees.

“Patients and families already deliver the lion’s share of self-care and direct care,” she says. “Forward-thinking health care organizations are recognizing this and partnering with patients and families to improve care, processes and outcomes. Including patients throughout an organization—in governance and research, among faculty and leadership, on committees and quality improvement teams—is key to accelerating the change we need. The earlier patients and families are included in the design and planning of a program, the more value they can bring.”

Increasing evidence indicates that engaged patients have better health outcomes, while patients lacking the skills of engagement incur higher costs. Some call patient engagement the next blockbuster drug. Are providers ready to meaningfully engage?