Patient Engagement at the Margins: Healthcare Providers’ Assessments of Engagement and the Structural Determinants of Health in the Safety-Net

Fleming MD, Shim JK, Yen IH, Thompson-Lastad A, Rubin S, Van Natta M, Burke NJ
Source: Soc Sci Med
Publication Year: 2017
Patient Need Addressed: Chronic Conditions, Patient satisfaction/engagement
Population Focus: Complex care
Demographic Group: Urban
Intervention Type: Best practices, Staff design and care management
Study Design: Other Study Design
Type of Literature: White

Increasing “patient engagement” has become a priority for healthcare organizations and policy-makers seeking to reduce cost and improve the quality of care. While concepts of patient engagement have proliferated rapidly across healthcare settings, little is known about how healthcare providers make use of these concepts in clinical practice. This paper uses 20 months of ethnographic and interview research carried out from 2015 to 2016 to explore how healthcare providers working at two public, urban, safety-net hospitals in the United States define, discuss, and assess patient engagement. We investigate how healthcare providers describe engagement for high cost patients-the “super-utilizers” of the healthcare system-who often face complex challenges related to socioeconomic marginalization including poverty, housing insecurity, exposure to violence and trauma, cognitive and mental health issues, and substance use. The healthcare providers in our study faced institutional pressure to assess patient engagement and to direct care towards engaged patients. However, providers considered such assessments to be highly challenging and oftentimes inaccurate, particularly because they understood low patient engagement to be the result of difficult socioeconomic conditions. Providers tried to navigate the demand to assess patient engagement in care by looking for explicit positive and negative indicators of engagement, while also being sensitive to more subtle and intuitive signs of engagement for marginalized patients.

Insights Results

Overview of article

  • This article explores how providers define, discuss and assess patient engagement in practice for high cost patients

Methods of article

  • The chronic care management (CCM) teams 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, coordinate care, and meet the complex needs of patients who experienced fragmented healthcare, multimorbidity, and significant socioeconomic and behavioral challenges
  • The research team conducted a total of 50 in-depth, semi-structured interviews with CCM team members and affiliated medical staff. Interview topics included: 1) CCM program goals and objectives; 2) Patient engagement and interaction; 3) Work practices and organization; 4) Institutional arrangements; and 5) Barriers and challenges to providing care


  • Care teams used direct (e.g., medication adherence, verbal agreement) and indirect approaches (e.g., assessment of body language, notice of patient missing too many appointments) to signal patient engagement, or lack thereof. Inexplicit signs were generally used if direct ones were not available
  • CCM providers reported that 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 difficult to predict for patients living in poverty. Poverty, housing and food insecurity, histories of violence and trauma, racism, and exclusion from the medical system are key determinants of patients’ health crises as well as predominant factors shaping care relationships
  • Substance abuse was a common issue faced by patients, prompting “harm reduction” and other types of strategies to engage patients
  • CCM resources were directed towards engaged patients due to limited resources. However, providers did note the difficulty in this direct shift due to difficulty in explicitly identifying patient engagement. In that light, providers did routinely re-evaluate patient engagement and conversely, if a patient continued to show disengagement, providers would lessen attempts to engage
  • Patient engagement differs from compliance or adherence. While CCM providers saw adherence to treatment as a sure sign of engagement, they also considered patients to be engaged even when they were not able to adhere to treatment
  • Many providers reported that intuitive assessments enabled a more holistic approach to assessing patients’ complex circumstances

Key takeaways/implications

  • This study suggests that patient engagement has the potential to exacerbate health disparities in some instances due to direction of care to patients most engaged. This study also indicates that attention to socioeconomic determinants of health will be crucial to efforts by clinicians, researchers, and policy-makers to define and operationalize patient engagement in care. Finally, this study compels further inquiry into how normative judgments of patient worthiness and potential to improve continue to shape distributions of vital healthcare resources for the most vulnerable