CHIRON scholar Melissa Creary considers the "speed of trust" in biorepository-enabled research: what indicators researchers should use to guide when and how to engage with communities by Melissa Creary and Megan Doerr
Published on Jun 27, 2024. DOI 10.21428/4f83582b.949be8ec
Since October 2022, the CHIRON scholars have been meeting to discuss the complexities of what community is, who gets to define community, and who gets to say when and how researchers engage with communities within the setting of biorepository-enabled secondary data use research. Of course, these conversations tend to lead to more questions instead of definitive answers. This week, CHIRON scholar Melissa Creary contemplates the question “What indicators should researchers use to guide when and how to engage with communities?” While this question is considered with some regularity in primary research, how does it apply to biorepostory-enabled secondary use research?
Indicators for engaging communities
As a qualitative researcher, I often think about how and when to engage communities in my own conceptual and empirical work. The principles of trust and justice drive these considerations for me. Further, the myriad ways that community voices have been only superficially probed, if listened to at all, in the name of conducting research fuels my commitment to ensuring authentic community engagement in my own investigations. With that intentionality poured into the research process, my team and I often find the process of engaging with communities in research bumpier, longer, and harder to act on than we could ever imagine. Even when we think we have assembled a comprehensive viewpoint (or as comprehensive as allotted time allows - which is another blog post), we have often found ourselves not ready to address all the complexities that arise when doing community-engaged research.
When we consider what indicators researchers should use to guide when and how to engage with communities for biorepository-enabled secondary use research, readiness is also at the heart of the answer. Is a community ready to receive whatever research is offering them at the time? Are researchers, policy-makers, or other entities who use big health data ready to responsibly engage with the community? Are researchers ready to truly listen to what community needs are–especially if they feel far removed from the community their databases assemble data points from? Has enough trust been developed to support this readiness–especially, as an example, when individuals in a community may never know they had consented to the data being in a database after they received care?
Of course, this focus on readiness–for both primary and secondary researchers–does not easily mesh with most research funding cycles. I am often on a soapbox about the need for at least a two-year pre-grant implementation time period that researchers are afforded/mandated to embed themselves within the community in efforts to begin the trust building process (yet another blog post). Funding cycles are the very bounds to the readiness question, I have found.
As the academic workgroup considered indicators we should use to guide when and how to engage with communities, I organized our conversations by mapping questions we should be asking along a “Community Engagement Indicator” spectrum. This mapping is imperfect, mostly because it was and still is difficult to conceptualize the ways that data repositories and the secondary data use research they enable can be adapted to address these important questions. For me, as a researcher who works with relatively small sample sizes, it’s one thing to ask communities to think about small-ish scale implications, but another for the big data that drives ML/AI research towards discovery and innovation. Should we be conceptualizing what a new community engaged research spectrum needs to look like? If the original goal of this spectrum is to increase the level of community involvement, impact, trust, and communication, the spectrum and its conditions are likely to change when ML/AI motivations’ are often to move quickly and not “at the speed of trust.” This trust becomes better aligned when values are shared and social drivers of health are recognized as being inscribed in this ML/AI data.
Here are the key questions and guidances that came out of our conversation. Many of these points may appear to be more salient to primary research settings at first read; I challenge the research community, funders, and policy makers to consider the ways in which these concepts can be applied in biorespository-enabled secondary use research.
Key questions |
Before research begins |
During research |
After research ends |
|---|---|---|---|
Is there a community? Are they ready? Are the researchers ready? |
Decide on the community you seek engagement with. Do they have a governing body? Are their representations organized? Depending on time allotment, find ways to begin to embed and provide value to the community of interest. Become knowledgeable about the community’s culture, economic conditions, social networks, political and power structures, norms and values, demographic trends, history, and experience with efforts by outside groups to engage it in various programs. Learn about the community’s perceptions of those initiating the engagement activities. A minimum of two year trust building plan should be developed. Adjust accordingly if you have less time. Consider not engaging unless/until you are able to dedicate intentional time to create and foster community relationships. |
Be flexible in timeline of projects involving community (it may be helpful to allow approximately one year for the project development stage (i.e., all steps preceding the initiation of data collection), 1.5 to two times as long as you think you should need for data collection, and an additional year for analysis, dissemination, and project wrap-up) |
Enable community partners to offer feedback upon completion of their involvement |
What are the historical narratives around the research topic? What has already been promised to the community by past researchers? What has already happened? What fractures already exist? |
Examine existing research or reports summarizing the demographic characteristics within the community or communities. Ask: is the research question a community priority? Is it exploitive? Are there likely to be actionable social or policy implications of the research? How much need does the community have for the data? Assess competing priorities of communities. Discuss and define assumptions/preconceptions about roles, responsibilities, norms, values, successful outcomes, etc for both researchers and community groups. Come up with shared understandings. |
The community should be provided with an opportunity to review the research, including interpretation of data–Community forums may also be organized to offer a formal presentation of the findings to the broader community to check the researcher’s understanding and interpretations |
Enable community partners to co-present at conferences/meetings and coauthor relevant publications - Be explicit that drafts mean that changes can be made and that feedback is both expected and desired |
Who needs to be at the table? |
Engage the community to make sure that you are being as inclusive as possible. How will they be integrated as part of the research team and not just serving in an advisory capacity? Seek approval from tribal or other local review groups. |
Plan for members of research teams to be a community fixture throughout the research project - this should align with early conversations about the community’s culture, economic conditions, social networks, political and power structures, norms and values. |
|
What agreements need to be in place before research commences? |
Formal commitments should be made and all. Some components of a sample research agreement can be found in the image below. Consult with community partners about who the important audiences will be and what their needs are, and ensure adequate budget for community based knowledge translation. Participants and community stakeholders may also be consulted about where to publish the results. Whenever possible, dissemination activities should be agreed upon in advance and indicated in the research agreement |
Acknowledge and discuss power imbalances throughout the research project period |
|
What kinds of material compensation will be offered? |
Compensation should be agreed on (both monetary and non) before research begins. Be thoughtful, creative, and collaboratory with communities. Provide value back to the community. |
Provide community partners with time and opportunity for developing designs for proposals, and provide training for community partners if they lack knowledge in some areas of research design |
|
How will community voices be integrated through each phase of research? |
Consider standing up community advisory board and/or including community members as paid project staff. |
The operating procedures and needs of academic institutions, federal agencies, and small community-based organizations are usually very different. Communicate and invest in capacity building as needed. |
Include community members as co-authors |
How is power sharing agreed upon and what processes will be developed to support? |
This chart is just the beginning–it lays out some crucial questions, but there are still so many more. For example, who decides when the research is exploitative and should not happen? How do we properly and responsibly account for intersectionality? For instance, what happens if and when a participant belongs to more than one defined community that might conflict with each other? I also turn to Meredith Minkler’s work on community organizing. She, like many others, understands that the dimensions of community partnership relationships are dynamic. As such, we need to (re)conceptualize a research and informed consent process that is also dynamic. Indicators for how and when researchers should engage with a community must consider the social, cultural, political, economic, and structural conditions of the community and potential partnership. The skills, resources, power, shared values, participation, and leadership of any given community must be assessed and collaboratively discussed before, during, and after any research endeavor.