People facing inequities like homelessness, poverty and stigma and who also have chronic health conditions (such as cancer, liver failure, or heart disease) are increasingly disadvantaged as their health is declining.
Research shows this group of people have many barriers to care resulting in unmet health needs, lack of trust in the health care system, and feeling judged due to mental health or substance use issues, poverty, and/or homelessness. Our research suggests that the perspectives of people who face such inequities are seldom considered especially when interacting with health care providers.
Our project looked at the use of patient-reported outcome measures (PROMs) and patient reported experience measures (PREMs) to better understand if they capture the perspectives of marginalized populations. We worked directly with people experiencing poverty, substance use, mental health issues to figure out how to best to engage them in research, determine if and how current outcome and experience measures could be used, and which measures were most relevant.
Some top priorities identified were:
Our findings suggest that the engagement process requires attention and thought in the planning stages. It is important to budget the necessary time required to build relationships during the research process.
One key example of this relationship is that how we engage communities is as important as what we do together. Since patient-oriented research is committed to amplifying community voices, flexibility and accessibility are critical to facilitating co-development processes.
The pandemic disrupted our ability to engage community members face-to-face and the research team had to quickly pivot to create opportunities for meaningful conversations. However, it is important to recognize that not everyone has the technology, resources, or ability to move to a virtual platform.
Ultimately, these findings suggest that measurement tools used with marginalized populations need to reflect the perspectives being measured and that experiences of care may have significant impact on health outcomes.
If someone has a poor experience when seeking care, they may be reluctant to return.
Stajduhar, K.I. (2021 November 25). 10 Things you Need to Know in Doing Ethnographic and Community-based Research with Vulnerable and Marginalized Populations in Palliative Cares. Dutch-Flemish Scientific Palliative Care Conference, Tiel, The Netherlands (virtual).
Stajduhar, K., & Whitlock, K. (2021, October). Advancing the science of patient-centered measurement methods: Making visible the needs of vulnerable and marginalized populations. 28th International Society for Quality of Life Research, Calgary, AB. (virtual). See recording below.
Donald, E., Whitlock, K., Sands, D.J., & Stajduhar, K.I. (2020, October 8). Towards equity-informed care: A co-development process for meaningful patient-reported evaluation of care for persons experiencing structural vulnerability and chronic illness. [Presentation]. Putting Patients First 2020 Conference, BC (virtual).
Kelli Stajduhar, PI
If you’re in a rush, check out these snack-size highlights:
“Lived experience” in patient-oriented research
Experiences are outcomes
Capacity building is for patients & researchers
Watch the full webinar: