CARE: Community Action Research for Equity – Understanding care and decision making for Incarcerated Patients

About This Grant

ABSTRACT: On any given day, nearly 2 million people are incarcerated in the US. People of color, disabled people, LGBTQ people, and people from lower socioeconomic statuses are incarcerated at much higher rates than white, able bodied, cis, straight, economically privileged people. This population experiences high rates of chronic illness and infectious disease prior to incarceration and continue to experience worse health during and after incarceration. The level of healthcare provided in correctional facilities varies, but in all cases when the medical need of a patient exceeds the capabilities of the institution, they are transferred to the community setting for care. While incarcerated patients are entitled to many of the same decision-making and privacy rights as non-incarcerated patients, little is known about how patients form relationships with their care team and make healthcare decisions while incarcerated, particularly in the community hospital setting. While most hospitals have policies on shackling, police presence, and other security measures, our preliminary research indicates that many clinicians are unaware of these policies and even more clinicians are unclear how to navigate care decisions within a complex policy landscape, perpetuating systemic inequities in care delivery. We will use the San Francisco General Hospital as a case study to examine how institutional, local, state, and federal policies converge and the conflicts that may arise as providers and correctional staff implement said policies with a diverse and vulnerable patient population. We will interview local and institutional policy makers from the hospital, the jail, and the sheriff’s department (N=45) and survey clinicians (N=500) about their knowledge, understanding, and utilization of existing policies (Aim 1). Through institutional ethnography, including participation observation and interviews with clinicians (N=50), patients (n=50), and correctional staff (N=25) we will develop a multifaceted understanding of care delivery, models of consent and decision making, and ethical challenges for incarcerated patients in the hospital setting (Aim 2). We will then use methods of Human Centered Design, within a Participatory Action Research framework, to translate empirical research findings into community driven policy and practice solutions (Aim 3). We are intentionally involving people with lived experiences of incarceration in all phases of the research (as co-investigator, research staff, advisory council members, and partners in policy development). We will engage in community-led co-learning of research best practices for collaboration with people impacted by the criminal legal system. Through this research, we will generate the needed evidence to develop community-based policy and practice recommendations to improve care, consent, and decision making for incarcerated patients in the hospital setting, advancing health equity and extending the research capacity of people with lived experience of incarceration. We will advance new understandings of the ethical principles of autonomy and justice for incarcerated patients while removing structural barriers to research through community-led efforts.