The Health Equity Research Beyond COVID-19 Series highlights lessons learned when conducting research with marginalized and vulnerable communities during the pandemic, as well as implications for how to ensure the way in which we go about doing research is patient- and community-affirming. This post describes one of the embedded research/evaluation projects the Weitzman Institute, an organizational member of AcademyHealth, conducted during the pandemic. The PCORI funded-project, “Identifying precision medicine PCOR questions relevant to underserved populations” exemplifies the challenges and opportunities that came with pivoting a patient-engaged research project, which, by design, was to be conducted entirely in-person, though due to the COVID-19 pandemic, had to proceed in a solely virtual format.
Knowledge co-production: “nothing about us without us”
The project is grounded in health equity in terms of the research gaps being addressed, as well as the approach undertaken to address those identified gaps. First, the project was developed in response to the current lack of inclusion of diverse populations in precision medicine research as the majority of the literature in this field to date is based on white populations. Second, the project draws from patients served at Federally Qualified Health Centers (FQHCs) who are representative of patient populations that have historically been underrepresented in biomedical research, with the goal of establishing longer term engagement of this population in precision medicine research. Third, patients’ voices and lived experiences are valued as a valid form of knowledge to ensure that the research questions we ask will actually help patients and communities they are intended to serve. As such, patients are defined as true partners in the project, and accommodations to support their participation were made throughout the project. The patient is included in the development and execution of this project, including conceptualizing, drafting, and revising research questions; participating in focus groups and multi-stakeholder taskforce convenings, and; providing feedback and recommendations to the development of future patient-centered outcomes research and/or comparative effectiveness research questions and projects aimed at precision medicine specifically for FQHC populations.
Centering the voices of patients in this project is one of the core tenets of the Weitzman Institute: research should be inclusive and relevant for patients. Moreover, language matters: Patients are not merely seen nor described as a human subject or data source, rather as a research partner at all stages of the process from research conceptualization (ensuring the questions we ask matter to patients) through dissemination (ensuring the findings from our study are widely available and accessible). Similarly, health education and supporting patients’ understanding of precision medicine was built into the project timeline so the project was not solely a matter of gathering data from the patients. After data collection and syntheses were completed, drafted findings were presented back to patients reflecting an intentional effort to ensure that they were seen as stakeholders with whom findings were to be shared and disseminated.
One of the barriers to success was a 100 percent turnover in the staff originally involved in the project, compared to the current members of the project team, and there were several barriers related to recruitment. The target population from which our team was recruiting were not familiar with precision medicine, which made it somewhat challenging to convey the value of the project (what’s in it for them). In an effort to course-correct, the team modified the recruitment script as well as other project materials, and included more tangible examples to make the topic of precision medicine easier to understand.
Additionally, there were challenges with assumptions related to the use of Zoom. During recruitment efforts, the project team found that the mention of Zoom discouraged potential participants from getting involved in the project as some participants either did not have the proper equipment and/or other functions that can be taken for granted e.g., personal email address. Also, obtaining consent via Zoom, which the team addressed by making IRB modifications to allow for verbal consent only. Additionally, the project approach was originally designed pre-pandemic to be completely in-person, and that some patients may have decided to participate had the activities been held in person. Lastly, there was initially high no-show rates at interviews; the project team began making phone calls to remind participants of their interviews rather than relying on email reminders, which helped to some degree.
Implications for future research
There are several lessons learned that can be applied to future patient/community engaged research. First, in the pre-planning stages, future projects could beta-test all materials with patients from the target population prior to launch. Similarly, having someone who has experience with patient engagement in virtual platforms, such as a community health worker, would have been helpful to have as part of the recruitment process to avoid some of the challenges encountered by the team. The project team also recognizes the importance of using different modalities for recruitment e.g., flyers, phone calls, and blocking out more staff and staff time to conduct personal outreaches by phone to potential participants. While Zoom both served as a necessity and convenience, the project team recognizes that not all patient participants feel comfortable engaging virtually due to privacy concerns. For example, some potential elderly participants questioned whether team members were legit and from the health center, or if they were being scammed. Thus, workarounds, including audio only participation, as well as in-person as we begin to emerge from the pandemic, should be considered in future projects.