Engaging Key Voices in Work on Race, Gender and Health

MCL Backstory

By Jen James and Beth Thew

Whose voice is part of community engagement? How do you ensure patients who are marginalized are heard? And who makes the decisions about what is shared with patients?

Jen James, PhD, centers these questions in her research on the intersection of race, gender and health in the experiences of patients with cancer and chronic illness.

James’ healthcare interest, particularly in chronic illness, was sparked by multiple re-readings of every book she could find by her favorite childhood author, Lurlene McDaniel, who writes about young adults grappling with chronic illnesses and mortality. “In college, three of my classes had the word ‘death’ in the title,” James said. Her first job was working on a bone marrow drive at a blood bank. Yet she didn’t want to pursue direct patient care.

Originally intending to pursue health policy, James found it a bit too “top-down.” Seeking to understand how health systems worked on the ground, she pursued a master’s of social work, during which she had an internship at a hospital, working in the ICU and cancer center. She was surprised to find she did enjoy the direct service side of healthcare. As a social work intern, James’ position involved both emotional support and discharge planning for patients. She began to feel a sense of unease at the growing number of her patients who were dying but who were unaware of their prognosis or had received the news in a way they could not understand.

Another book came into James’ life that showed her a different path she could pursue in healthcare: Sharon Kaufman’s …And A Time to Die. James made the decision to pursue a doctorate in sociology and had the privilege of Kaufman serving on her dissertation committee. “It blew my mind…you could talk with and learn from people and translate it to something bigger. I knew I should be a qualitative researcher,” James said.

End-of-life care is what James thought she would study. Physicians’ assertions that, as providers, they could “tell” what and how much a patient wanted to know about their illness and diagnosis didn’t feel true to James. James was reading Black feminist theory at the time and wondered if the clinicians were as good at understanding the needs of all patients—particularly those who live at the intersection of multiple forms of oppression—as they imagined themselves to be. James sought to find out by doing an ethnography on how Black women faced end-of-life decisions. This work led to James partnering with Black women to understand the power, oppression and structures that influence care.  James began thinking about how care is delivered and patient-provider relationships.

James pursued a post-graduate fellowship, doing work in cancer and genomics while conducting an ethnography of a clinical trial. Yet, she was still grappling with topics related to the culture of medicine. She wanted to understand how and why patients’ and providers’ perceptions of the structures and delivery of care align—or don’t. Since her dissertation work, where she encountered patients who were incarcerated and receiving care in safety net clinics, she had been thinking about what end-of-life care and hospice look like when you are incarcerated. 

In a pilot launched just before the Covid pandemic, James began to do research with Black women with chronic illness who had been incarcerated. She sought to understand how women faced illness and health while in the carceral system. “The carceral system is punishment, so how does that work with medicine? How does it work if you have a police presence in a hospital? How do patients make their own decisions if they are restrained?” James asks. Through a series of projects, James has been examining how patients form relationships with providers (or not), make healthcare decisions, and engage in informed consent and refusal of care while incarcerated. 

James wants to center the voices of those with lived experience of incarceration in this research. She is currently conducting research on reproductive health and justice in California prisons, done in partnership with community-based organizations that have been doing this work for decades. She thinks about if and how research can be conducted in an equitable manner while patients are incarcerated, and how lessons of community-based and -led research can be applied in carceral settings. Through it all James works to keep the voices of patients and participants at the center of her work.