Community engagement studios with New Mexico Health Councils

Developed by Joosten et al., community engagement studios (“CE studios”) bring community members to researchers for a structured consultative session about their research project [Reference Joosten, Israel and Head13,Reference Joosten, Israel and Williams14]. The community members are well experienced and knowledgeable on the topic. This model brings community members “front and center,” refers to them as “experts,” and highlights their importance and potential impact to the project. We adapted this model to focus on research with communities generally, rather than one specific research project, but adhered to the model otherwise.

CE studios are preparatory to the project and therefore many insitutional review boards (IRBs) (including UNM’s) agree that studios do not need IRB approval as long as the studio is conducted with the following practices: audio recordings are allowed for note taking purposes only, may not be shared outside the studio facilitation team, and must be destroyed upon completion of notes; no transcription or data analysis may occur other than descriptive statistics of demographics and feedback survey results; and no direct quotes may be published.

The experts we asked to participate in our CE studios were health council members. The New Mexico Department of Health divides the state into four public health regions for different contexts: Northeast, Southeast, Southwest, and Northwest. Counties are further segmented within these regions. Leveraging this regional structure, the CELS identified health councils she actively attends in each region. She then invited individuals from those health councils to participate in virtual CE studios that would be hosted via the Zoom platform. The goal was to engage ∼8 participants per region per studio (8 participants × 4 public health regions = 32 experts).

As part of inviting experts to participate in a studio, all interested community health council members were asked to complete a brief demographic survey. Upon survey completion, the CELS confirmed participation interest and provided an individualized orientation to give the experts an overview of what to expect in the CE studio. During this orientation, the CELS also assessed accessibility accommodations, computer and internet access, and answered any questions related to using the virtual Zoom platform.

CE studios were conducted between March and June 2023. The CELS collaborated with qualitative methodologists at the UNM HSC CTSC Community Engagement and Research Core [Reference Rishel Brakey, Martinez and Sussman15] to facilitate each studio conversation. The studios followed a uniform format across all sessions. This format consisted of: 1) a brief presentation by the CELS to outline the studio’s purpose; 2) structured questions asked by a facilitator; 3) an open discussion for experts to share additional perspectives; and 4) completion of an evaluation form by experts.

The CTSC Integrating Special Populations committee [16] helped the CELS write four primary questions to ask at each CE studio: 1) What does “research” mean to you? 2) What experience do you have with research? 3) What would communities want to know before agreeing to participate in research? and 4) When a study is presented as an opportunity for your community, what things need to be addressed to see if it is a good fit? Experts each received $50 merchandise cards in appreciation for their time. In accordance with the CE studio model, meals also were provided in the form of $30 meal cards (due to meeting virtually).

The CELS took brief notes throughout each CE studio, listening for common key points shared by the experts. Once all studios had been conducted, the CELS reviewed these notes in order to identify overarching similar key points that could be synthesized in a single overall studio summary. Following the studio model and IRB requirements, we did not transcribe or formally analyze studio conversations. To ensure the most important points were correctly captured and organized, the CELS conducted member checking with studio facilitators and four experts.

Outcomes

The total number of experts was 31, averaging 8 experts per CE studio and drawn from all 12 New Mexico Health Councils that were invited to participate.

Three key points were identified across all four CE studios specific to community needs for research participation. These were (in no particular order): 1) things that help with community research participation, 2) things that get in the way of community research participation, and 3) things researchers should consider when approaching New Mexican communities. Table 1 summarizes responses to these aggregate key points.

Table 1. Community engagement studio key-points summary and recommendations by experts

Regarding the first key point, things that help with community research participation, experts shared a variety of techniques and strategies that researchers could employ. They suggested that when assessing whether a project is a good fit, evaluate the community’s interest and capacity to assist and/or be involved in the research. Next, they suggested providing training and capacity building for research and explained that not all community members have research education.

Experts also shared that researchers needed to be transparent about research funding and intentions. These factors set the agenda for the research that is conducted and are important in determining individual and community research participation. In addition, experts suggested that researchers also need to build familiarity and trust with communities. In this context, experts from the Northwest region explained the need for “kinship” between researchers and community members. While kinship is a word often used to explain familial relationships, experts encouraged a similar type of relationship building for researchers to facilitate trust and break down historical barriers and challenges to research participation. Experts additionally stressed the need for researchers to collaborate with community champions and influencers, recruit through trusted community members and health councils, and be available and responsive to community needs. One expert explained how unresponsiveness to questions they had about a prior research survey they were being asked to complete led them to ultimately decide to not participate in that study. The important practice of bringing the results of the study back to the community was also strongly encouraged as a way for individuals to see the impact of their participation and also its benefit to the community.

The second key point that experts shared was things that get in the way of research participation. Geographical barriers, internet access limitations, and language barriers are challenges for research participation. Experts also shared that capacity issues in communities stood in the way of research participation as there are often not enough clinics, staff, or even public spaces to conduct research in their communities. In addition, experts shared that their communities are over-surveyed, so researchers should ensure needed data has not already been collected to optimize capacity. Time off from work also stood in the way of research participation. Restrictions by the grant funders were noted as a common challenge, especially when it comes to incentives for research participation such as providing a meal or cash outside of merchandise cards for participants. Misinformation and cynicism about research were lingering issues resulting from the COVID-19 pandemic the experts saw in their communities, followed by negative perception of research. Trust issues related to politics, the government, and certain politically charged topics also got in the way of research participation in their communities.

The final key point experts shared was things researchers should consider to enhance community research participation. Experts suggested that researchers need to consider the uniqueness of rural communities as some explained they chose to live in their rural communities for many reasons. They also offered that cultural aspects of various populations in New Mexico need to be taken into consideration. Experts mentioned Hispanic, Indigenous, Black, veterans, elder/older, and conservative populations. There are also varying caregiver relationships that should be acknowledged and considered such as relatives like aunts, grandparents, siblings, and foster parents rather than making nuclear family assumptions. Experts suggested that Mental health, medical care, food deserts, and housing issues could affect research participation as well and researchers should find ways to mitigate these issues to ease the added load of research participation burden for communities.