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 of the team, quality of care improves.
Engagement Improves Care
When patients and family are more engaged in their care, they manage their chronic conditions better, with less anxiety and stress and shorter lengths of stay in the hospital. When patients and families are included in engagement activities through open visiting hours, shared decision-making tools, or clinical staff asking “what matters to you,” symptom assessment and decision-making will improve as well as medication errors and emergency department return visits. Data from our interviews demonstrate how involving patients throughout organizational levels can increase patient satisfaction scores and decrease lengths of stay and medication errors.
Trust is a concept that repeatedly presented itself in our literature review and interviews with health care executives. Interactions that enhance trust and compassion are shown to have greater patient adherence to treatment recommendations and preventative care. In primary care specifically, adherence rates are found to be three times higher when relationships are characterized by high levels of trust and patients feeling known as a whole person. One study found that the single greatest predictor of whether patients with HIV adhered to treatment was whether they felt “known as a person” by their provider. The potential impact of engagement in care was validated by many health care executives we interviewed both anecdotally and through independent research studies. These analyses are supported by key informants we interviewed that reference increased patient outcomes and satisfaction scores with engagement activities. These legitimize consumer engagement initiatives and demonstrate the quality and safety implications possible with a focus on compassion and engagement.
Engagement Lowers Costs
Patients choose hospitals based on their anticipated experience rather than on evidence that supports medical excellence. Data shows that patients value non-clinical characteristics of care as seen by increasing Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) scores with open rounding, and their value translates to their quality of care and overall health. Shared decision-making can increase retention rates when health care consumers are engaged actively in decision-making and are able to choose the most appropriate and economical choice as an informed consumer.
At one hospital, including family and nursing staff at the bedside during clinician rounds led to improved HCAHPS scores and improved nursing efficiency. Embedding consumer engagement throughout an organization will require investments to be made that place individual patient and family needs at the forefront. Interview responses pointed specifically to technology as an area where hospitals can better incorporate families through bedside charting and safety and education videos. However, technology has been shown to both facilitate and impede these interactions, as it has less to do with the purpose of the tool itself than with how providers choose to use it.
Engagement Reduces Staff Burnout
Many of the interviewees also recognized that clinicians need access to resources that support their efforts to engage patients and their families. Tools and technology intended to improve patient and family engagement should be integrated into ordering practices, nursing assessments, rounding, and clinical decision-making. These strategies are intended to make teamwork more convenient, efficient, and patient-centered. Incorporating these strategies can translate into improvements in work-related stress and burnout, as well as in quality of care, patient satisfaction, and readmission rates. Healthier workforce environments also significantly impact the patient’s experience.
Promising Practices Supporting Patient Engagement Activities
Shared Decision-Making Tools: Used to share information and facilitate discussions about treatment options between patient and provider, shared decision-making tools are linked to higher retention rates and profitability, shorter lengths of stay in the hospital, greater adherence to treatment recommendations, and increases in patient experience scores.
Patient Activation Measure (PAM): A valid and highly reliable tool used to measure a patient’s capacity for engagement and health literacy level of activation, PAM supports the design of individual care plans as well as evaluations of intervention efficacy across patient demographics and acuity. Substantial evidence supports the validity of the tool; patients with higher activation report significantly better health and significantly lower rates of primary care and emergency room visits, and they are more likely to exercise regularly and not smoke. Higher activation is also associated with increased engagement in consumeristic health behaviors and improved self-management.
Transforming Care at the Bedside (TCAB): A Robert Wood Johnson Foundation and Institute for Healthcare Improvement–founded initiative to improve quality of patient care and service through empowerment of frontline staff, more effective care teams, improved staff satisfaction, and nursing leadership support, TCAB has been foundto improve nurse satisfaction while significantly decreasing nurse turnover rates, falls with harm, and 30-day readmission rates.
Code Lavender: A crisis intervention team consisting of chaplains, social workers, and holistic-certified nurses who provide emotional and spiritual support to patients, caregivers, and frontline staff. Intentional emotional support is a low-cost, positively received strategy to improve workplace culture, help staff feel cared for, and promote a hospital’s healing environment specifically for patients and families experiencing trauma.
Attaining Nursing Magnet Recognition: Standards for nursing environments including transformational leadership, structural empowerment, exemplary professional practice, new knowledge, innovations, and empirical outcomes. The Magnet designation helps to ensure appropriate staffing levels and resources, leading to reduced nursing turnover, higher nurse job satisfaction, and better care experiences for patients.
From the patient’s side of the bed, I witnessed not only the loss of my failing husband, but also the loss of my own agency in real-time, crucial conversations that determined his care. For me and other loved ones on that unit, I saw that families were not included in rounds, a cultural norm that I felt needed to be shifted. And as a clinician, I learned that we must work as a team to invite patients and their family members to participate in rounds and take the time to build trust with patients and their families and ask what matters to them. The quality and cost benefits of patient engagement are clear when administrators and clinicians support frontline staff, promote a culture of compassion and teamwork, and insist that patients and families who have the capacity and willingness to be involved can and will be heard. High-quality care can truly transform health systems and the patient experience — but it must be done with patient engagement in mind.