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Patient Engagement from Both Sides of the Bed

In September 2016, my husband, Bob Hassmiller, fell off his bicycle and spent the last 10 days of his life in the ICU. While advances in medical technology have undoubtedly improved care and extended lives, the machines that kept him alive made me feel distanced from the medical professionals who decided his future.

Despite my own health literacy as a nurse, I felt discounted during rounding and decision-making. Bob’s providers stood outside his room and talked at computer screens about data points, rather than meeting with us to discuss our goals and needs. I wanted to engage with Bob’s providers, to feel heard by them, to contribute to medical rounds and be kept informed of his prognosis, because I rarely left his side. Soon enough, I did insist on being included in rounds, but clearly it was not the norm — I never saw any other family members engaging in this way, and a nurse told me that family members are not invited to rounds.

After my husband’s death, I returned to work at the Robert Wood Johnson Foundation determined to improve the care experience for patients and their families. Fortunately, my desire aligned with the foundation’s mission to build a Culture of Health to enable all people to live healthier lives and experience greater well-being.

“Consumer engagement,” also known as patient engagement, has become a popular neologism among hospital administrators who want to attract consumers, aka patients, to their facilities, and among health care policymakers who see it as a way to improve care. Hospital marketing brochures tout their facilities’ emphasis on patient engagement, but engaging patients in their health care decision-making process must go beyond a few tools and checklists that providers use.

My colleague Ani Bilazarian and I conducted a literature search and interviewed 30 health care executives in an effort to demonstrate the financial and quality care implications that are possible by intentionally including and engaging the patient’s and family’s voices on the care team. Our research shows that when patients and families are included in medical rounds as valued members