Flint community science leadership: co-production of knowledge around environmental and public health action

ABSTRACT

At the ten-year anniversary of the Flint water crisis, Flint residents continue to work to improve the well-being of their community and advance community leadership in science. While the water crisis is remembered by most as just an egregious example of government mismanagement, a lesser told story is that of the ongoing leadership and mobilization of Flint residents. Our paper reflects on a collaborative project as part of a larger, sustained partnership in co-producing knowledge about Flint residents’ experiences with the water crisis, their expertise in responding to public health crises, and concerns and curiosities that may be explored as scientific research questions. We detail our investigative effort over five years focusing on understanding Flint residents’ expertise in responding to the water crisis and our processes of working with residents to connect personal experiences to explorable questions. We align the activities of our engagement (focus groups, workshops, a technology co-development pilot study, and interviews) with an iterative process of listening, dialogue, and action consistent with Paulo Freire’s processes for advancing collective consciousness. We position our work as an implementation of liberation sociology by working to explore scientific questions that are meaningful and impactful to disenfranchised populations.

KEYWORDS:

• Flint water crisis
• environmental justice
• water quality
• technology development
• CBPR
• liberation sociology

Introduction

The Flint water crisis is largely remembered as a gross display of government malpractice in the management of the city of Flint’s economic and water system. This denial of accountable governance was decried as a clear example of environmental injustice and environmental racism, having exposed the entire city to unfair health hazards ranging from elevated lead, copper, disinfection byproducts, and microorganisms including legionella and shigella (Davis et al., 2016; Demashkieh et al., 2017). But while the water crisis received international attention, the significance of the mobilization by Flint residents cannot be overstated. They raised the alarm regarding changes in water quality and health impacts, sought to understand and interpret risks and vulnerability on their own terms, fought to hold individuals and systems accountable for their negligence, and worked toward meaningful change. The events of the Flint water crisis shifted the national narrative on decaying infrastructure and asserted the ongoing relevance of lead in water as a public health priority. Despite all these, academic literature and the scientific community have frequently simplified the narrative, sometimes to highlight the importance of the contributions of specific scientists and other times to emphasize the degree of harm inflicted on the community (Johnson and Key, 2018; Carrera et al., 2019, 2023a; Carrera and Key, 2021). Recognizing the mobilization efforts of Flint residents takes up the opportunity to learn from their expertise in scientific leadership and public health crisis response.

Our research team evolved from Flint residents’ expressed concerns and questions about the management of the water system and ethical scientific involvement in the Flint community. Building from sustained, invited partnerships and grounded in community based participatory research (CBPR) values, we adopted an explicitly Freirian inquiry structure modeled after Wallerstein and Bernstein’s empowerment education approach to public health investigations. In this paper, we detail our approach to knowledge co-production in understanding and responding to an environmental public health crisis. We ground our approach in the literature on community engaged science, with its roots in participatory and action focused methods to establish the theoretical connections between science, knowledge (co-) production, and power. We observe the application of these foundational sociological theories in the structuring of equity focused public health interventions. From this scholarship, we outline how we structured the phases of our research to align with Paulo Freire’s principles of Listening, Dialogue, and Action in collaborative explorations. We conclude by discussing strategies that we adopted for addressing emergent challenges over the course of the project, which offer key insights in advancing equitable strategies for knowledge co-production.

Concepts literature

While public participation in science has a long tradition, many of these efforts have functioned to manage public behavior and encourage adoption of imposed governance and technologies. Sherry Arnstein (Arnstein, 1969) differentiated between participatory approaches that served to extract compliance from disciplined populations and approaches that sought to involve participants as collaborators toward empowerment and impact. While Arnstein has been critiqued for oversimplifying structures of engagement and the connection of specific research methods to empowerment, she provided a basic gradient for contrasting compliance exploitation with impactful community empowerment.

This juxtaposition highlights differing underlying ontological assumptions about the true measurable laws of social life according to instrumental positivism versus a social constructionism perspective that understands social structures as artifacts of power relations, as understood according to liberation sociology (Feagin et al., 2014). Physical and natural science disciplines (i.e. STEM fields) tend to prefer an instrumental positivist perspective that does not interrogate the relationships that produce accepted ‘facts’ in STEM fields despite their dependence on public funding structures for research awards, regulatory systems which determine inputs and constraints, and even occasional incorporation of social science disciplines into their core curriculum. Specifically, environmental engineering heavily yet uncritically relies on economic models in the assumptions used for systems design and analysis.

When science is pursued through public funding, it is always an implicit political activity reflecting the priorities and values of the social system underlying it. Failing to account for the fundamentally political context of all science naturalizes dominant power structures that influence and benefit from particular lines of thought, while simultaneously delegitimizing questions that could provide evidence for challenging those very power structures (Hess, 2015). For pathways that reinforce existing structures of domination, research is treated as legitimate ‘science’ whereas potentially disruptive pathways are often discounted as ‘activist science’ (Frickel et al., 2010). In his Nobel Peace Prize acceptance speech Elie Wiesel (Wiesel, 1986) said, ‘We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented’.

Critical approaches draw on copious scientific studies demonstrating the existence, persistence, and intensification of ongoing social and health disparities, and recall that all scientific investigations are political processes. In this way, investigating mechanisms for undoing oppressive systems differs from traditional scientific methodologies in the deliberate awareness of a scientific endeavor’s influence on different political opportunities and outcomes. Public health as a field, with goals to promote collective well-being of a society, relies upon an intrinsic set of values that inform ethical assumptions and strategic priorities including explicit efforts to promote justice by reducing health disparities and achieving health equity (Kass, 2004; Powers and Faden, 2006; Yeh, 2022). Recent conflicts around mandatory vaccination campaigns demonstrate the contrasting values and ethical assumptions that have plagued public health efforts since vaccines were first developed (Colgrove and Samuel, 2022).

A liberation sociology approach to science considers science for whom and for what purpose to achieve what ends (Feagin et al., 2014). Specifically, it is defined in its potential to be useful by oppressed groups for achieving lives of dignity as they define them. This emancipatory approach to science is connected to a long tradition of using scientific methods to achieve equity (Carrera, 2023). Participatory action research (PAR) is an established emancipatory methodological approach that builds from the insights of Paulo Freire’s critical pedagogical perspective (Freire and Bergman Ramos, 2000). Freire argued that traditional educational models rely upon a hierarchical assumption of expertise – a banking model of education where educators deposit knowledge into recipient students. This system of education is not capable of transforming social systems but instead functions to replicate them. In contrast, Freire said that people need to become aware of their collective shared circumstances as reflective of embedded social systems, a process he called conscientization. Through developing a collective consciousness of shared oppression, people could participate actively in transforming their own circumstances and work to challenge the relationships of power that disadvantage them. Freire offered a specific dialogical method of inquiry to develop co-investigations of systems between facilitators and communities. This method functioned, he argued, through cooperation, unity, organization, and cultural synthesis.

Importantly, Freire did not believe that people needed to have a set level of education in order to participate in their own investigations and promotion of conscientization. Rather, Freire offered a specific set of investigative steps for exploring the lived conditions of the oppressed, their own interpretations about the difficulties of these systems, and their own insights about what actions can and should be taken to disrupt those systems to what outcomes. His thematic investigation approach was adapted for use in public health through what would ultimately become community-based participatory research methods (Israel et al., 1998; Wallerstein and Duran, 2008). Wallerstein and Bernstein (Wallerstein and Bernstein, 1988) use Freire’s approach to develop an empowerment education model that begins with listening to the priorities of the community, engaging in a participatory dialogue process organized around posing problem scenarios, and ultimately taking actions that emerge from the dialogue process (Figure 1). Wallerstein and Bernstein concur with Freire that action may not always be possible and the act of bringing the community together to develop collective consciousness is action on its own. Grounded in Freire’s emancipatory framework, we aligned the listening, dialogue, action model outlined by Wallerstein and Bernstein for our process in co-developing a community research project in Flint with the purpose of elevating Flint residents’ expertise in responding to an environmental public health crisis.

Figure 1. Paulo Freire’s empowerment education approach as adapted by Wallerstein and Bernstein (1988).

Freirian knowledge co-production inquiry

In lieu of a Methods section, here we describe the activities of our collaboration, which we came to refer to as the Community Driven Flint (CDF) project. Across our efforts, we aligned our interventions with a Listening, Dialogue, and Action iterative framework.

Listening

The seeds of our seven-person research team (likewise co-authors here), the CDF Project began in 2015 when Dr. Carrera was invited to an investigation where Rev. Dr. Bailey served as a community representative. This initial project proposal was not funded due to reviewers’ lack of awareness of emergent water concerns in Flint. Nevertheless, this effort introduced Dr. Carrera to Rev. Dr. Bailey where during their interactions Dr. Carrera deferred to and asserted the leadership of Flint residents. Dr. Key served as Executive Deputy Director for Flint’s Community Based Organization Partners (CBOP), of which Rev. Dr. Bailey was a member, co-leader, and collaborator. Dr. Key invited Dr. Carrera to contribute to a large team of Flint residents (including Rev. Dr. Bailey) and supportive academics who were collectively working to tell the story of the Flint water crisis from the residents’ perspective – the Flint Narrative Group (n = 18). Flint Narrative Group members attended dozens of public meetings that were held in Flint in response to the water crisis to listen to residents’ concerns and government responses. The Flint Narrative Group coded transcripts from a selection of 17 public meetings and held 13 focus groups with different demographic groups in Flint to develop and share community identified themes, interpretations, and priorities (Johnson and Key, 2018; Carrera et al., 2019; Hamm et al., 2023).

As the Flint Narrative Group progressed, Dr. Key, Rev. Dr. Bailey, E. Yvonne Lewis, and Dr. Carrera discussed developing a research proposal geared toward developing low-cost technologies to support community-identified priorities. To prepare for the proposal, they conducted three focus groups with youth (n = 3), adults (n = 7), and seniors (n = 12) to discuss research ideas and what types of innovations might be meaningful to the community. While supportive of the effort, focus group participants were not interested in novel low-cost water testing tools but instead were concerned about information sharing and risk communication. They wanted to know how the effort would lead to greater transparency for the community around public health concerns related to water. From this feedback, the group pivoted to a project focused on information sharing within the community. In partnership with Rev. Dr. Bailey and Dr. Key, Dr. Carrera submitted a proposal in 2017, which was funded by an National Institutes of Health (NIH), National Institute of Environmental Health Sciences (NIEHS) Transition to Independent Environmental Health Research (TIEHR) K01 career award from 2018 to 2021 (with no-cost extensions through December 2022 due to Covid shutdowns in research activities). In addition to traditional IRB review through Michigan State University’s (MSU) Human Research Protection Program, the project was reviewed and approved by CBOP’s Community Ethics Review Board (CERB), which considers potential collective harm to the community beyond individual risks and prioritizes broad community benefits for research conducted in Flint.

Once funded, Dr. Laura Sullivan (mechanical engineer at Kettering University, Figure 2), Melissa Mays (community health worker, activist, and community organizer with Water You Fighting For and Flint Rising), Pastor Cynthia Watkins, and Pastor Ronnie Wiggins, all Flint residents, were invited to join the CDF Project’s Action Council along with Rev. Dr. Bailey and Dr. Key. Additionally, Dr. Key served as Dr. Carrera’s community mentor under the K01 career mechanism. Action council members received an honorarium of $1000 annually 2018–2022, participated in all research meetings and activities, were full intellectual partners and collaborators participating in collective decision-making through all stages of the work. Dr. Carrera maintained full transparency throughout not just with respect to the projects’ funds and financial decision-making but also discussed with the Action Council how to best use her MSU Startup funds. Dr. Carrera held the perspective that her role was to work in service to the research needs of the community as represented by the CDF Action Council. To equitably balance labor and acknowledge that Dr. Carrera received a full-time salary supporting her involvement in the research activities, Dr. Carrera assumed primary responsibility for many logistics (e.g. picking up food and beverages for in-person meetings) and initial drafts in writing tasks including grant proposals, conference submissions, and manuscripts. While Action Council members reviewed and provided feedback on all manuscripts, to ensure collective contribution to written products, during team meetings Dr. Carrera ‘interviewed’ Action Council members to solicit content for and structure sections of drafts. Drafts were circulated with the team for revision and feedback.

Figure 2. CDF member Laura Sullivan. Credit: Kettering University.

Shared power was a core value held by the group. During initial group meetings in fall 2018, the team began by discussing their shared vision and values for the group. They prioritized being respectful and inclusive, wanting to make sure everyone was heard, and everyone’s voice mattered. They set out to use an ‘if you can live with it’ model of agreement, where they would strive for consensus but would work to ensure everyone was comfortable with all decisions team made. If not, they continued to discuss until all concerns were addressed. They intentionally did not use titles in the group or in research activities but instead addressed each other by first name to make everyone feel equally valued. Honorifics were used in mixed settings for formal presentations to convey respect particularly for the expertise of the Action Council members.

Across all engagement activities research participants were paid a $50 cash incentive for their time for any single engagement – an amount determined to be fair through the outreach efforts of CBOP. Additionally, food and beverages were provided for all participants at each engagement. The first phase of data collection, during 2018–2019, the team framed Flint residents as experts in responding to a public environmental health crisis. Living through the water crisis, Flint residents had to learn about water quality and lead quickly and in a way most Americans never have to think about. Four focus groups were held in Flint with a total of 41 participants: three at the Flint Public Library in English only and one at the Hispanic Technology & Community Center of Greater Flint in Spanish and English. Action Council members recruited participants and co-facilitated the focus group sessions where participants were asked to share their knowledge about and strategies for coping with impaired water quality. Participants were treated like peers who were learning with the team. Focus group sessions gave participants a place to share their fears, experiences, and needs without judgment.

Between and after the focus group sessions, the CDF team met to debrief and discuss emergent findings. Participants in focus groups expressed how they dealt with the uncertainty of the water quality as well as what it meant for them to trust information about water quality. Specifically, participants expressed that public health workers and scientists need to understand that centering trust and equity are part of the process of co-creating environmental health information. Participants in all focus groups shared fears of not feeling able to trust government statements about the safety of the water. Participants were more comfortable relying on themselves and their neighbors rather than the government to secure access to safe water (typically bottled water). They expressed questions and uncertainty about filters and water quality parameters.

Dialogue

Building from the community narrative process that supported the development of the CDF project along with directed listening through focus groups, the CDF team set out to hold water quality testing workshops to co-learn and dialogue with Flint residents about understanding safe water. During the second funding year, four 2-hour workshops were held at Kettering University with a total of 78 participants each attending one session. During recruitment and prior to attending each workshop, participants were provided with two 1-liter water sample bottles to bring to the workshop. Participants were not required to sample from any specific water source as the purpose of the sampling was not to make any general statements about the quality of water in Flint. Rather, the purpose of sampling was to engage Flint residents in a process of asking their own questions about water quality and support them through learning about resources that could help them to gather answers to those questions.

During the workshops and the later pilot phase, the CDF team worked to help participants think about their concerns and curiosities as potentially researchable questions. While regulatory compliance requires a specific testing protocol to compare water quality across municipal systems, these testing procedures are limited to a specific set of conditions, such as the cold-water quality from the kitchen sink during the first use in the morning after a short flush to elicit water solely from the water main. This specific context produces a different exposure condition than say, hot water retrieved from the bathroom sink with no pre-flush in the middle of the night to fill a bottle to make baby formula with. In these two scenarios different assumptions are made about both the infrastructural environment as well as the vulnerability of the population exposed yet they present equally valid questions. The first scenario is one of regulatory compliance regarding the water in the main distribution system that the municipality is responsible for. The second scenario addresses water within the premise exposed to household infrastructure and is a question of public health and risk management. The CDF team discussed how each context under which a participant collected their water sample represented different collection conditions and a unique frame that could be systematically replicated to answer a specific research question.

During each workshop, participants were provided with one of two home water test kits to use to test the water that they brought in. Further, the first two workshops were held so that participants only used the instructions provided with the test kits, after which the CDF team facilitated a discussion about water quality parameters. The second two workshops integrated the water quality parameters discussion throughout a process where the CDF team guided participants in using the kits. Dr. Carrera provided an interactive PowerPoint presentation discussing the different water quality tests in the kits (pH, Pb, Cu, total chlorine, nitrates/nitrites, hardness, iron, and alkalinity). Information was shared in easy-to-understand language that was friendly, accessible, and collaborative (Figure 3).

Figure 3. Water workshop presentation. Members of the CDF team from left to right: Jennifer Carrera, Melissa Mays (behind), and Kent Key. Credit: CDF Team.

Participants completed a pre  – and post  – questionnaire at the beginning and end of the workshop. All participants recorded their results from their testing process. Water samples were also sent to Michigan’s drinking water laboratory and an independent laboratory for comparative analysis. Laboratory analyses indicated no consistent differences between the methods of testing and no major water quality concerns were found in the laboratory results of the samples (Figure 4).

Figure 4. Water sampling bottles collected by the CDF Team. From left to right: Sarah Bailey and Kent Key. Credit: CDF Team.

The goal for the CDF team was not to determine water quality for the participants but rather to help them learn about using water test kits and see how learning about water test kits felt for them. While the water test kits were difficult for many to use on their own, and even people with high levels of education were confused by some of the instructions, just learning that the kits existed and being guided to use them made many feel more in control. In particular, participants expressed that they enjoyed learning about what PPM (parts per million) and PPB (parts per billion) mean. Learning about PPM and PPB are measures of concentration frequently discussed in relation to water testing but not often explained; the explanation made many people feel like they had a better understanding of water quality in general and less afraid of the technical information.

After the workshops, the CDF team intended to share the laboratory results with participants. The team developed 6-page individualized infographic report backs with limited reliance on functional literacy for all 78 workshop participants to convey water quality information. Report backs included general environmental health information about lead, copper, and chlorine as well as comparative results for each participant’s reported results from their test kit and the laboratory findings. Unfortunately, the Covid-19 pandemic halted all in-person engagement activities. The team reached out to participants to meet over Zoom but only 3 of 78 were able to log in. The team concluded that the circumstances and technology were too overwhelming to try to do report-back meetings over Zoom. Participants had limited access to high-speed internet, limited familiarity with Zoom, many only had cellular devices with small screens (as opposed to computer screens) to access Zoom meetings, and many shared cellular devices with family members.

Action

When direct engagement was paused, activities with the Action Council continued. Regular engagement during imposed isolation helped to support members of the group that experienced significant losses during the award period, including divorce, a house fire, family and community deaths, job loss, Covid illness, and cancers. The connection and continuity gave the group a sense of purpose during a politically and socially tumultuous and uncertain time. A key action of the CDF team during the pandemic was to develop and submit multiple grant proposals (none ultimately funded) that helped to articulate a larger vision for the work and efforts of the team. Large funding proposals created the opportunity to consider large scope visioning for multiprong, systems-based strategies for interventions while smaller funding proposals cleaved off sections of the larger vision to implement specific dimensions of the work.

The efforts of the CDF team were deeply grounded in and emergent from the long history of community engaged research organizing and leadership of the Flint community. As such, a goal identified by the group was to work toward elevating Flint’s leadership model for community-driven science as a national model for under-resourced communities facing environmental and health injustices. Three components of this vision, framed as three proposal interventions, were to:

• increase technical capacity for developing resources through injecting scientific funding and training into the Flint community;

• increase community capacity to lead research through documenting and sharing the story of Flint’s expertise in CBPR and supporting the training of Flint residents to become new scientific leaders; and

• increase scholarly capacity to follow the leadership of community members through developing reflective listening and humanizing techniques to promote humility, empathy, and co-learning between sympathetic scholars particularly in STEM fields and community members.

When in-person research activities resumed in Fall 2021, in October 2021 the CDF team launched a six-month pilot with 26 Flint residents. The pilot was designed to expand the research team with the participants as co-investigators with the goal of developing a tool that could rapidly share data within the community responsive to emergent community identified priorities. The initial goal was to develop a mobile application that could collect home water test kit results and observed water quality (i.e. taste, color, and odor) and share that information with a centralized source that could aggregate it and share it with the larger community. The team imagined what if Water You Fighting For had a tool that they could have used to collect community data at the time of the water switch in April 2014? In order to allow coding to be entirely directed by the community and not hampered by costs or time, Dr. Carrera learned Java to be able to build an Android mobile application.

Meetings took place monthly with participants attending one session either Tuesday evening or Thursday afternoon at a local church (Figure 5). During the first month, the CDF team introduced the project, provided workbooks with the printed workshop PowerPoint slides, and distributed Android tablets so everyone had the same baseline technology. Each month participants received a home water test kit to sample their household water. In discussing the co-learning expanded research leadership approach, the CDF team directed the group to collectively decide what questions they wanted to explore and decide how they wanted to sample water. Were their priorities a specific location in the home, seasonal changes, temperature changes, or random? The group decided to repeat sampling for two months at a time, starting with the kitchen, then the bathroom faucet, and then the tub/shower. Ultimately, not all participants followed this protocol but the conversation allowed the group to discuss different implications to sampling strategies.

Figure 5. Members of the CDF Team at final April pilot session from left to right: Ronnie Wiggins, Melissa Mays, Jennifer Carrera, and Cynthia Watkins. Credit: CDF Team.

Each month Dr. Carrera presented a new version of the app that she had coded in the interim in response to the groups’ discussions and participants’ reactions to previous versions of the app (Figure A1). The initial version of the app was shared with participants at the November meeting. This version met all of the initial parameters initially identified by the team, which was an app that could collect data and share with the group. The interface collected water quality data with prompts for each of the test kit parameters along with observed characteristics. When the user completed entering the data, a submit button allowed them to launch an email application that preformatted an email with all of the data that they entered to a central team email address. From there the information could be aggregated, cleaned, and posted to a website if desired, achieving the goal of allowing the community to identify the information they wanted, collect it efficiently, and share it quickly across the community.

At subsequent meetings, the group worked to improve the interface and information sharing functions. Participants identified a YouTube video (not created by this project) that instructed viewers how to use the specific home test kit used by the group. The second version of the app had a multi-screen interface with a welcome splash screen, a slide for instructions that links to the YouTube video guiding participants through using the test kit, a parent activity hosting the instructions for entering data and the submit button, and fragment tabs for themed areas of data collection so all data entry showed on one screen in each type of data collection. The same data entry fields as version 1 were present (edit text, radial, check box) but version 2 did not submit data to any location with the user interface prioritized in version 2. With versions 2 and 3 participants continued to use version 1 to submit their monthly water testing results through email.

The third version of the app removed the features present in the previous two versions (submit function and data formatting) and still did not send the data outside of the device. Instead, the third version successfully saved data to the user’s device. The user was able to delete records by swiping left, add records to the underlying SQL database, and edit existing records. A save button allowed the user to save the record. A plus button prompted the user to add a new record. All records were included as edit text fields except the tablet number which was in a number picker field. The only required user fields were tablet number, date, and time in order to save the record. All other fields were optional. Tablet number, date, and time were shown in the cards displayed in the main activity.

The fourth version of the app extended the third version by retaining the local data saving feature and adding to it the ability to send the data to a Google Sheets database. By using a Google Sheets database everyone in the group could access the submitted data rather than a centralized individual or organization. By allowing data to be shared across a database, the group discussed implications of data sharing, who should have access, and different kinds of individual and collective vulnerabilities. Additional formatting of the add/edit record activity was added for easier viewing and data entry.

The final version of the app delivered in April 2022 extended the fourth version by retaining the save, send, and delete features. A confirm deletion popup was added to prevent unintentional deletion by swiping. Location was added to the Add/Edit Record Activity. The default location was left as an MSU campus address if the user preferred not to enter location. Upon saving, the app launched a map to show a dropped pin for the saved location. Date and time pickers, rather than text entry, and additional formatting changes for question entry were added. Had the pilot continued, the team’s goal was to create a version of the app that displayed a heat map using participant entered data for different variables and integrate the environmental health literacy tools with the data collection process. This would have included the instructional video, more sophisticated interfaces for engagement, and incorporation of the workbook information to help users better understand water quality parameters.

Over the course of the pilot, the team created an app that could collect observed water quality (taste, color, and odor), testing results, the date, time, and location, save that information to an Android device, send that information to a Google spreadsheet that everyone in the pilot could see, and map the location using the device’s mapping software. Through the engagement process, participants were initially reluctant and overwhelmed by the information shared and collective task. Initially, some asked why they should have to test their water when it should be the city’s responsibility. Such questions created space for conversations about trust in science, data, government, and regulatory monitoring. Discussions in later stages of the pilot shifted to a collective value for participation in science, explicitly discussing the association between democracy and science. Participants expressed that it was important for people to be involved with science so that they could weigh in on how their community is protected. Some participants described their participation in the pilot as therapeutic as it gave them answers and let them speak about their concerns and questions without judgment. They felt part of something bigger and important.

After project completion, we interviewed 23 previous participants and 20 Flint residents not otherwise part of the project about their experiences with science, the impact of their participation in the project (if relevant) on their interest in science, and their ongoing community concerns that may translate to future directions for community-scientific inquiry. With the time past the water crisis compounded by the impacts of the Covid-19 pandemic, respondents were significantly concerned about issues related to mental health, PTSD, stress, isolation, declining community cohesion, loss of neighborly connections, as well as increased fears about violence and crime in the community. Several participants expressed desire for increased opportunities to learn collaboratively through emergent social and environmental health topics in regular learning communities, perhaps to be held at the public library.

Discussion

The CDF project was staged through three major interventions aligned with funding years that co-incidentally coincided with the approach to empowerment education promoted by Wallerstein and Bernstein for engaging in a transformative co-learning process (as shown in Figure 6). The efforts of the CDF team built from a deep commitment to begin by listening to the expressed needs and priorities of Flint residents as they grappled with the injustices of the Flint water crisis. The foundation of the partnership that eventually comprised the CDF team arose through individual commitments that prioritized community voice and respect for community leadership in science.

Figure 6. Listening, dialogue, action alignment with CDF project activities

In the context of Flint, academics and state officials belittled the concerns of residents as they observed water quality and health effects worsen after the water switch, so community healing and trust building required listening first. Flint residents had substantial experience and knowledge about water quality and health experiences that were not widely acknowledged prior to the water crisis. Indeed, up until the water crisis, the public health community largely considered lead in water to be a minimal concern and not a major funding priority (as exemplified by reviewer feedback in 2015). As well, Flint residents raised complex questions about multiple factor systems based on simultaneous concerns about chlorine, disinfection byproducts, microorganisms, and heavy metals; all these were complicated by aging public and private infrastructure and declining populations. Collectively, those concerns exceeded standard engineering modeling assumptions. Flint residents have expressed enduring distrust in government. Untrustworthiness was demonstrated repeatedly through racialized state violence over time through direct attacks and abandonment (Hamm et al., 2023). To begin to build functioning relationships between disenfranchised publics and the public agencies that are supposed to serve them, listening is the beginning, the way, and the return.

Freire understands dialogical investigation to be a process of co-learning between marginalized populations and sympathetic resourced partners who position themselves to work toward systems transformation and emancipation of oppressed groups. The goal in a collaborative co-learning process is not (and should not be) extractive but rather the pursuit of justice. This means working toward meaningful answers that aid oppressed groups in working toward a goal of a life lived with dignity as they define it. While Freire offered a specific strategy for dialogical investigation, the CDF project positioned the team to dialogue with Flint residents iteratively as they wished to continue to engage over the project. At each stage participants were eligible to continue to engage and contribute to the project from focus groups, workshops, pilot study, and final follow-up interviews. Including participants who engaged in interviews about next stage research questions and the relevance of science for addressing community concerns in Flint (which were conducted after the end of official funding), a total of 147 Flint residents (not including the six Action Council members) participated across the stages of the CDF project. Each inquiry stage responded to previous priorities expressed by participants; participants were welcome to contribute and collaborate as best suited their needs and interests. While many community concerns were expressed, the insight that most surprised the CDF team was the impact of just explaining measures of concentration (PPB and PPM) in accessible and familiar language.

While the CDF team set out to develop a low-cost tool for addressing community needs, the goal of this project was never to build an app. Building an app was a medium through which action was organized. For this reason, the team was able to stay flexible and responsive to the community’s concerns without worrying about the precision of the final product. Wallerstein and Bernstein emphasize that engaging in critical questions about community problems is action within a Freirian frame. In this way, the CDF team was able to use app co-development as a process to support facilitating community conversations about the relevance of science. It highlighted the relevance of democracy to science, and the possibilities and limitations of science for addressing community concerns.

For the team, these efforts demonstrated the essential relevance of community mobilization to scientific efforts. Significant threads of the scientific establishment consider activism and working toward social justice to be contrary to scientific pursuits, but science is held as a public value for its potential to improve the human condition through innovation and discovery. Social transformation is a core value of science. When addressing social inequities is viewed as contrary to scientific goals, it must be understood that science is not operating in pure abstraction but within a specific power structure that benefits from the maintenance of social inequities. Scientific methods are as applicable to questions that may produce outcomes that advance social equity just as much as those that do not threaten the status quo. However, insistence on the separation of science from mobilization ensures that social issues such as health disparities may never be addressed. While it is not appropriate for a scientist to curate data to ensure answers are favorable to a political frame, it is also not a scientist’s role to be proscriptive in ensuring that science cannot be used to answer potentially impactful questions. Given the limitations of applied science practice, it is necessary for scientists to understand how their positionality and priorities shape the kinds of questions they pursue. This process of engaging in critical knowledge co-creation is precisely the action that may support collective consciousness and emancipation from oppression as Freire envisions.

Conclusion

Flint is an exceptional community in terms of its long history of mobilization and involvement in the development of CBPR methods, but it also has faced numerous economic, health, and environmental challenges. It offers a unique but transferable model for community leadership in scientific engagement that has drawn the interest of federal funders, academics, and other impacted communities across the nation. Deeply listening to participants and partners was an important part of the CDF team’s priorities, educational efforts, and vision for the future. Listening through reflection showed participants that the team cared about their experiences and expertise. Rather than inserting any specific data collection agenda, the team responded to participant questions and priorities throughout the project, gathered and shared information requested by participants, and dialogued with participants to arrive at a shared understanding of their scientific curiosities. The study and partnership have had many positive impacts on each of the members of the team. Rev. Dr. Bailey at one point described the work of the team as ‘healing for the healers’. This healing has come through learning and practicing deep listening with each other and orienting the work toward the strength and capacity of the Flint community.

The collaborations of this group have led to six publications, four university and national awards, at least 20 invited talks and presentations, and at least 10 funding proposals totaling well over 50 million dollars. Publications from this work advance appreciation for the fact that public awareness of the water crisis was due to the strong organizing efforts and history of mobilization of Flint residents (Carrera and Key, 2021; Carrera et al., 2023b). While many people have framed Flint as merely a victim of the water crisis, the CDF team has helped to highlight the strength, leadership, and resiliency of Flint residents.

Through listening to residents’ concerns and helping them to frame their concerns as researchable answerable questions, facilitating co-learning and enhanced self-efficacy in supporting residents to use low-cost, accessible home water test kits, and developing a data collection tool responsive to the information residents wanted to gather, our project has worked to bring resources to Flint residents so that they can answer their own scientific questions. In doing so, Flint residents have expressed that they feel heard, more in control, and excited to continue working to improve their community. Finally, the CDF project advances an alternative model of scientific engagement that works to redirect scientific resources (financial, labor, knowledge, and networks) in service to answering the research questions of marginalized populations toward identifying transformative solutions that can truly work toward social and health equity.

Disclosure Statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by National Institute of Environmental Health Sciences [grant number 1K01ES029115-01].

Notes on contributors

Jennifer S. Carrera

Jennifer S. Carrera, PhD, MS, MS is an associate professor of sociology and environmental science and policy at Michigan State University. Her research focuses on environmental justice issues around water access and water quality, with an emphasis on low-income communities in the United States. Dr. Carrera's research interests focus on community capacity to lead environmental health and health equity research and the pathways through which academic partners can support community-led research agendas. Since 2015, Dr. Carrera has engaged in community-based participatory research with partners in Flint, Michigan.

Pastor Cynthia Watkins

Pastor Cynthia Watkins is a Flint resident, pastor of Well Church International Ministries and a retired Flint City bus driver. Pastor Watkins is a leader in her community and was recruited by Rev. Dr. Bailey to connect community leadership to scientific research through engaging in and collaborating on public health research studies affiliated with CBOP.

Rev. Sarah Bailey

Rev. Sarah Bailey, PhD is a Flint resident, co-founder of Bridges Into The Future, Inc. and the current CEO. Through Bridges Into the Future, Inc. a community based non-profit organization in Flint, MI, she has partnered with the University of Michigan Hospital, Neurology Department and Stroke Program in a community research effort to determine the effectiveness of stroke prevention methods in the African American Community. She is the vice chair of the Community-Based Organizations Partners (CBOP). She has pastored the Portraits in Christ Ministry for more than 20 years. Dr. Bailey is a past co-chair for the Genesee County Speak to Your Health Survey. She has served on the Flint Housing Commission Advisory Board, as well as the Community Values Advisory Board for the State of Michigan Department of Public Health.

Pastor Ronnie Wiggins

Pastor Ronnie Wiggins is a Flint resident and pastor of the HQLM Vision Center. Pastor Wiggins is a leader in his community and was recruited by Rev. Dr. Bailey to connect community leadership to scientific research through engaging in and collaborating on public health research studies affiliated with CBOP.

Laura Sullivan

Laura Sullivan is a professor in mechanical engineering at Kettering University in Flint. As a Flint resident, Dr. Sullivan was personally affected by the water crisis and as a professor of engineering, she has worked to investigate water contamination in the city, develop solutions, and serve as an expert on a variety of committees and inquiries.

Melissa Mays

Melissa Mays is a Flint resident, a SOAR Case Manager with Genesee Health System, and an activist. She co-founded Water You Fighting For?, is an Operations Manager for Flint Rising, and was the lead plaintiff in a class action lawsuit related to the Flint water crisis.

Kent Key

Kent Key, PhD, MPH is a Flint resident and an assistant professor in the Charles Stewart Mott Department of Public Health at Michigan State University. He is a health disparities researcher and the executive deputy director of the Community-Based Organization Partners (CBOP). He is the Founder of CBOP's Community Ethics Review Board (CERB), where community members conduct ethical reviews of proposed research projects to ensure that no harm is done on a community level and to assess mutual benefit. As a scholar-practitioner bridging both academia and community together to create equitable collaborative relationships in research, Dr. Key has worked on national, regional and local levels. Throughout his career, Dr. Key has served in an intermediary role helping to translate the resources of government, research partnerships and foundations into practical support for communities engaged in research. Dr. Key is the founder and director of the Flint Public Health Youth Academy, an extension of his doctoral dissertation.

Appendix

Figure A1. Stages of CDF pilot app development