Established by a large Federally Qualified Health Center, Community Health Center, Incorporated in 2007, the mission of the Weitzman Institute is to promote equity and optimize health outcomes for vulnerable populations across the U.S. and globally through innovative research, education, and policy. The Weitzman Institute was named in honor of Gerard Weitzman, a local community pharmacist who in 1972, was among the first members of the Middletown community in Connecticut to offer support for opening a free clinic for the poor and underserved. The Weitzman Institute is an organizational affiliate of AcademyHealth.
When the proverbial torch was passed to me to lead Weitzman in the latter part of 2019, I was excited at the opportunity to build on its history of conducting innovative, timely, and relevant research to safety-net settings and populations. I entered my new post with an unwavering intentionality to improve who was doing the research and how the research was being conducted at Weitzman. More specifically, I envisioned building out Weitzman’s staff so that it would be reflective of the patients and communities we were intending to serve, from my most seasoned senior leaders to those entering the health services research workforce for the first time. Similarly, I wanted our research to center the expertise of people with lived experiences of dealing with, navigating, and overcoming multiple, intersecting systems of oppression and marginalization, by better leveraging mixed methods, community-engaged, and community-based participatory research approaches.
In March 2020, COVID-19 was declared a pandemic. My staff and I had to think through how to quickly pivot in such unprecedented times and circumstances: How could we conduct health equity research without directly engaging with patients and communities, given the implementation of safety precautions and complete shift to remote work?
For us, we had no choice but to continue this much needed research. The murder of George Floyd just two months into the pandemic was a stark reminder that health and social injustices continued , and even worsened, during the COVID-19 pandemic. Such injustices that continued to deeply impact the patients and communities we aim to serve were unrelenting, so we had to find other ways of continuing to use research as a tool for promoting health and social justice.
This four-part series highlights three embedded research/evaluation projects the Weitzman Institute conducted during the pandemic, particularly lessons learned for conducting health justice-related research that apply beyond the current public health crisis. Some of these lessons learned, which we will delve into more over the series include:
- Knowledge co-production: “nothing about us without us While the popularized slogan, “nothing about us without us” has origins in ensuring that no policy should be decided without input from those affected by the policy, the same holds true for research. A recurring theme throughout this blog series is the necessity to include patients and communities throughout different steps of the research process, from conceptualization of research questions, to data analysis, as well as co-authorship and other forms of dissemination.
- How to make sure the questions we ask will actually help patients and communities. As described in the forthcoming blog on a PCORI-funded precision medicine project, this lesson builds on the prior by highlighting the responsibility that researchers have in ensuring that research benefits patients and communities and are of interest and relevance to them. This includes going through a vetting process with patients and communities, and a genuine openness, on the part of researchers, to have patients and communities challenge previously held assumptions and provide feedback that is then incorporated in the revision of questions.
- Language matters. Several patients and community members, as well as staff, have openly critiqued our field for the use of the term “human subjects” as it can be perceived as objectifying study populations and further contribute to the historical power imbalances between the researcher and those being researched. Consequently, through the blog series, we refer to patients and communities as research partners, to both level the playing field between traditionally-trained researchers, and patients and communities, and to reaffirm the importance of the expertise and lived experiences that patients and communities in enriching our field’s understanding of a given issue.
- Normalize community engagement and health equity in research. As described in the forthcoming blog on Weitzman’s efforts on an OMH-funded Advancing Health Literacy initiative with the City of Waterbury, Connecticut, health equity is not solely a topic to be studied, rather, a lens through which we see and approach our research. This may entail, as was the case in this project, conducting pre-work with patients and communities to ensure they have what they need to successfully engage in the research in such a way that works for them. Such efforts can help build patient and community capacity to engage in research, while also setting up the foundation for sustained, long-term partnerships between researchers and patients and communities that is both authentic and mutually beneficial.
- Decrease time from data collection to dissemination, particularly back to patients and communities. In the forthcoming blog featuring Weitzman’s partnership with LEGO on Prescription for Play initiative, we acknowledge that our field has at times, been slow to report findings back to the study populations (if at all) with whom we conducted the research. This dissemination step opens up the opportunity to both receive feedback, including corrections, as well as further builds our trustworthiness as researchers with patients and communities.
- Test and tailor dissemination messages and activities for different stakeholders. While we seek to contribute to the literature through the peer-review process, we also recognize that this dissemination approach may not reach all intended audiences. One of the additional lessons learned through these featured projects is the importance of thinking more broadly about how, where¸ and even when we share study findings.
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