Patient engagement at the margins: Health care providers' assessments of engagement and the structural determinants of health in the safety-net
Introduction
Improving patient engagement in care has become a priority for health care providers and policy-makers. Current health care reforms aim to develop and expand new forms of care delivery that place primary care as the foundation for the health care system (Rittenhouse et al., 2009). These new care delivery models, including patient-centered medical homes and accountable care organizations, are intended to tailor care to individual patients’ needs, preferences, and circumstances (Dubbin et al., 2013, Ishikawa et al., 2013, Nutting et al., 2011). However, health care organizations and policy-makers recognize that these delivery models require increased patient engagement in primary care in order to be successful (Cosgrove et al., 2013, Shortell et al., 2015). These reforms thus depend upon patients being willing and able to engage in care and take actions to improve their health. Efforts to increase patient engagement and implement patient-centered care have often focused on patients with chronic illness, as high health care costs continue to be driven by the growing number of patients with chronic illness entering the health care system (Anderson and Horvath, 2004, Shortell et al., 2015).
Health care organizations are implementing complex care management (CCM) programs to manage the care provided to the highest cost patients—the “super-utilizers” of health care services (Bodenheimer, 2013, Hong et al., 2014). Super-utilizers typically have a combination of multiple chronic illnesses, socioeconomic challenges, fragmented care, and frequent emergency room visits and hospital admissions (Harris et al., 2016, Johnson et al., 2015, LaCalle and Rabin, 2010). CCM programs work to coordinate care, improve patients' ability to self-manage their conditions, and reduce emergency room visits and hospitalizations. By reducing patients’ utilization of inpatient and emergency care, CCM programs aim to make up the costs of the care management intervention and save money for the health care organization (Hong et al., 2014).
The criteria for enrollment into many CCM programs include diagnoses of “ambulatory care-sensitive conditions” (Harris et al., 2016, Lewis, 2010), usually chronic illnesses that can be affected through a change in self-management. Moreover, the literature on CCM suggests that selecting for patients who are willing and able to engage in care is a crucial factor in determining whether or not a CCM program is successful in reducing hospitalizations and emergency room visits, and therefore reducing costs (Freund et al., 2012, Hong et al., 2015, Jackson and DuBard, 2015, Lewis, 2010). The definition of “care sensitivity” and the criteria determining eligibility for care management often include patient willingness to engage in care. In our ethnographic study of CCM programs in two safety-net hospitals, we examine how CCM providers select and retain patients based on assessments of patient engagement, and describe the challenges and dilemmas this presents for providers.
Concepts of patient engagement vary significantly, with some definitions focusing on the individual—e.g. “actions individuals must take to obtain the greatest benefit from the health care services available to them” (Center for Advancing Health, 2010:2)—and other definitions pointing to contextual factors and the actions of health care providers (see Koh et al., 2013). Carman et al. (2013) propose a framework for understanding patient engagement that includes “patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system—direct care, organizational design and governance, and policy making—to improve health and health care” (224). Concepts of patient engagement generally differ from compliance or adherence, which social scientists have critiqued extensively for their emphasis on individual factors such as patient responsibility, agency, belief, and lifestyle at the expense of attention to the role of the health care system or socioeconomic conditions (Farmer, 2005, Maskovsky, 2005, Whitmarsh, 2013). While conceptual frameworks for patient engagement purport to account for contextual factors, it is unclear how this might work in clinical practice. Despite the importance of patient engagement for health care reform and the proliferation of conceptual frameworks, little research has examined how health care providers define, discuss, and assess patient engagement as part of their practices of providing care.
Rather than starting with a definition of engagement, we look to how health care providers themselves describe patient engagement for “super-utilizers,” who are patients that face complex challenges related to socioeconomic marginalization (Bourgois and Schonberg, 2009, Farmer, 2005, Knight et al., 2014) including poverty, housing insecurity, exposure to violence and trauma, cognitive and mental health issues, and substance use. By investigating what counts as engagement for patients at the margins, we offer insight into how medical providers in safety-net settings try to account for the effects of difficult life conditions on patients’ ability to take part in medical care. Our study considers the perspectives of the CCM teams who provide direct care to these patients.
In this paper we describe how CCM providers navigate the demand to assess patient engagement by looking for positive and negative indicators of engagement, while also being sensitive to more subtle and intuitive signs of engagement. Next we describe how CCM providers understand the socioeconomic marginalization their patients face to interfere with their ability to adhere to treatment or explicitly engage in care. We also describe how providers understand engagement to fluctuate in response to precarious life conditions, making it very difficult to predict which patients would successfully engage in care. Finally, we explore the dilemmas that providers face in trying to assess engagement for patients at the margins. Here we emphasize the conflicts created by the demand, on the one hand, to enroll and retain patients who engage more easily and, on the other hand, the desire to provide care to patients that may be more difficult to engage but have a high need for care.
Section snippets
Methods and setting
We studied CCM programs located at two urban, safety-net hospitals in California. The CCM programs were established to reduce costs and improve the quality of care for the approximately 5% of patients who make up 50% of Medicaid and Medicare spending. The CCM teams we observed included nurses, community outreach workers, social workers, a medical assistant, a pharmacist, managers, and medical directors. The teams worked closely with primary care providers to design a patient-centered care plan,
Looking for signs of engagement
That's been the difficult piece, finding people who are appropriate and they want our help at the same time. That's been the trickiest piece. CCM Nurse
CCM providers in our study actively looked for positive and negative indicators that patients were willing to engage in care. Providers often found these explicit signs to be inadequate for detecting patients’ desire or readiness to engage in care and therefore looked for more subtle signs and tried to make intuitive assessments.
The enrollment
Engagement at the margins: looking towards the socioeconomic determinants of health
CCM providers reported that more marginalized patients often have low trust of the medical system and appear unwilling to engage, necessitating a search for more subtle signs of engagement and an intuitive approach to assessment. Moreover, providers understood patient engagement to fluctuate in response to precarious life conditions and to be therefore difficult to predict for patients living in poverty.
When asked to describe their patients, nearly all of the CCM identified poverty, housing and
Engagement and dilemmas of care at the margins
If we decide, well they're not engaged, so we're not going to be engaged, I don't think that's a very good approach, because we're suppose to be above and beyond that. We're the health care providers.
-Community Outreach Worker
The CCM programs we observed aimed to enroll patients who appeared willing to engage in order to maximize the benefit of the CCM resources. The practice of directing care toward engaged patients was based on the rationale that CCM is a limited resource and therefore ought
Conclusion
This is, to our knowledge, the first study to explore how medical providers in safety-net settings attempt to assess patient engagement in the process of providing care. In addition to a diagnosis of chronic illness and an assessment of being at high risk for future hospitalization, CCM providers attempted to assess patient engagement in care in the process of considering who is a good patient for care management. CCM teams tried to direct care to patients who were likely to engage in order to
Acknowledgements
We are indebted to the participants in our study for their time and attention, and for sharing their complicated work with us. We also want to thank our co-investigators Elizabeth Davis, Kathleen Dracup, David Moskowitz, and Dean Schillinger. Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health under award number R01NR015233.
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