Developing a Community Response Plan for Community-Driven Wastewater Surveillance and Monitoring of Infectious Cancers in a Tribal Nation

Background

A lack of infectious disease reporting, monitoring, and surveillance in remote rural communities has led to ineffective responses and delayed detection, placing communities and surrounding communities at heightened risk for disease outbreaks (Worsley-Tonks et al., 2022). Federal Indian reservations in the United States are often located in rural, remote areas with limited access to health care and other critical services. Public health surveillance data, while necessary for early detection of public health threats, are not always representative of or available to Tribal public health systems (Rhodes et al., 2024). Challenges in accurately including Native American populations in surveillance efforts include small population sizes, mismatched geographies (e.g., reservations span multiple counties), and unique community characteristics that may be overlooked by researchers not familiar with the community (Gregg et al., 2022). Timely surveillance data and response are critical as early detection of disease outbreaks saves countless lives. Community-based surveillance holds significant promise in rural remote settings (Worsley-Tonks et al., 2022) by fostering data sovereignty, local knowledge systems, and community values that transform public health systems across Tribal governments (Rhodes et al., 2024). Specifically, wastewater surveillance (WWS) of infectious diseases addresses critical needs in Tribal public health (Driver et al., 2022).

WWS provides an aggregate measure of pathogen presence in a community’s sewer system. For example, during the COVID-19 pandemic, WWS was utilized to estimate the community-level burden of SARS-COV-2 (the virus that causes COVID-19) (National Academies of Sciences, Engineering, and Medicine [NASEM] et al., 2023). It is a low-resource approach to detect and track SARS-CoV-2 at the community level without relying on individual patient health information (e.g., test results). Many Tribal communities have the requisite infrastructure for WWS, including six out of seven reservations in the state where this study was located (Menchú-Maldonado et al., 2024). WWS data inform public health decisions, actions, and policy, while raising awareness and guiding personal decision-making when communicated to the public (NASEM et al., 2023). A Community Response Plan is an essential part of this process and serves to integrate community-specific needs and actions based on WWS data.

The Rocky Boy’s Indian Reservation was established by an Act of Congress on September 7, 1916, to provide a home for two Tribes. The reservation is located in the drainage area of the Bear’s Paw Mountains and is about 130,000 acres. The reservation is centralized, rural, and isolated from neighboring towns, with the nearest town of Havre, MT (pop. 9,314) located 50 miles round-trip from the reservation. The study community partners, the Rocky Boy Health Center and Stone Child College, operate as the only Indian Health Service facility and Tribal college on the reservation, respectively. The Rocky Boy Reservation is a centralized community lending feasibility for infectious disease detection and outbreak response.

Faculty at the Tribal college established a collaboration with faculty at Montana State University in the fall of 2020 to develop the necessary expertise and infrastructure for WWS on the reservation. This collaboration led to further optimizing the reservation surveillance program to bring it in line with recommendations set by the U.S. National Wastewater Surveillance System and develop accurate models for local public health officials to more effectively use WWS results to implement disease prevention strategies.

Methods

The WM4M Project applied a Community-Based Participatory Research approach by emphasizing equitable community collaboration and leveraging existing community strengths. From February 2024 to August 2024, we established and began convening quarterly meetings with our Community Advisory Board (CAB), received Tribal community approvals for our study, identified external collaborators to partner on the study, and began drafting a Community Response Plan. From August 2024 to April 2025, three products to inform and educate the community, specific to infectious disease detection at the community level, were developed and approved by our CAB and community partners in April 2025.

Collaborators for this project represented diverse fields in microbiology, immunology, public health, Tribal community public health, and knowledge dissemination. The wastewater infrastructure belongs to the Tribe and is operated by the Tribal Water Resources Department. Technicians from the health center’s Environmental Health Department and the Tribal college are permitted access to this infrastructure to collect weekly wastewater samples. The State of Montana funds and provides technical assistance for sampling efforts of the health center. Samples are processed at labs at the college and confirmed by the university.

A CAB was convened to guide decision-making throughout the project. The board consisted of staff and faculty from the health center and the Tribal college. They identified the need for a Community Response Plan to disseminate WWS findings to the health center and Tribal leadership for decision-making purposes and to inform the community. The plan was co-developed through quarterly meetings with the study team, CAB members and invited collaborators. The Community Response Plan is intended for community-level detection of Initial sampling sought to collect baseline data on the presence of pathogens associated with HPV and H. pylori. Upon review and approval from the CAB, this study underwent review approval by the Tribal college Institutional Review Board and the Tribal Business Council via a Tribal resolution.

A working draft of a Community Response Plan was adapted from elements of public and rural health emergency preparedness plan guidance (Centers for Disease Control and Prevention, 2018; Rural Health Information Hub, 2024), with recognition that the pathogens being tracked would not require the urgency of an emergency, but still needed a thoughtful, planned response. The CAB identified the following key entities whose input would be needed to successfully implement the Community Response Plan: the Tribal health center’s public health nurse and Prevention Department, and the state’s Department of Public Health and Human Services (DPHHS) Communicable Disease Epidemiology Section. Collectively, these entities provided their respective reviews. The public health nurse discussed preparation and planning in terms of clinic supplies and increased volume of vaccination, screening, and treatment requests. The Tribal prevention director and the DPHHS epidemiology testing coordinator shared local and national dissemination efforts specific to utilizing the health center’s prevention team’s reach to promote awareness and provide educational materials to the community, and the sharing of resources, including the option to develop a WWS data dashboard. The draft Community Response Plan was reviewed and revised during four in-person meetings and workshops with the CAB, study team, and local partners.

Results

Three products were created to enable the WWS data to inform the community, aid in decision-making, and initiate appropriate action: a Community Response Plan, public education materials, and a WWS data dashboard.

The Community Response Plan contains: identified tasks, timeline, responsible parties, resources needed, communications, and information needs (see supplemental material). The plan was organized into three areas of response – the lab, the health center, and the community – and included key audiences of clinic staff, Tribal leaders, and community members. The process of creating the Community Response Plan identified capacity needs, such as having a communications officer in the clinic, and for professional and effective public educational materials. A Native American communications consultant with experience working for Montana Tribes was hired to design culturally sensitive, public-facing factsheets, a poster/infographic, and branding for the project. A WWS Data Dashboard is currently being piloted with existing infectious disease data external to this study that will eventually provide public access to regularly updated data on the presence of pathogens in reservation wastewater at the community level. Baseline data are currently being collected to inform what constitutes a “spike” or increase necessitating a response. Additional public health data sources will be investigated to add information to this dashboard as appropriate.

The CAB held conversations around WWS ethics throughout this process, including data sovereignty, delivering risk communication to avoid community panic, concerns about stigmatizing the community – both the single site where samples were taken (i.e., if anonymity was compromised) and the Tribal community at large, and whether WWS could be perceived as an infringement on privacy. These issues were addressed in part by the Community Response Plan and design of effective messaging that clearly explained the project and raised awareness of infectious pathogens without stigmatizing any population or causing fear. Data sovereignty was preserved through the delineation of stakeholders to be involved at each step, including health center administration and Tribal leaders, and provision of sensitively crafted information and screening procedures, ensuring the WWS data informed and benefited the community. The plan, educational materials, and data dashboard provide a structured way for WWS data to be communicated with the health center and Tribal leadership, establish a response protocol, and inform the community by raising awareness for preventive efforts.

Discussion

Relationships are critical for the effective utilization of WWS data. The success of the WM4M required close coordination between the Tribal college, the university, and the health center. In addition, strong relationships built on trust with the community can aid public health and prevention professionals in raising community awareness and providing health education.

Ethical issues of WWS must be considered and addressed (West et al., 2025). Data collection that follows the Ownership, Control, Access, and Possession (OCAP) Principles, which requires ownership, control, action and possession of data, affords continued trust and benefit across study collaborators (Schnarch, 2004). Data access, privacy and the risk of stigma were concerns raised by our CAB. In more populated areas, thousands of households are on the same wastewater system and risk of identification from aggregated data is unlikely (NASEM et al., 2023); however, in a rural Tribal community with a small sample, this is a realistic concern. Measures must be taken to protect privacy and share data appropriately (Jacobs et al., 2021; NASEM et al., 2023; Scassa et al., 2022; West et al., 2025). In Rocky Boy’s case, the CAB advised sharing data only at the community level to avoid stigmatizing any one village or individual. With proper safeguards, WWS can be an effective effort to protect the public’s health.

Conclusion

The WM4M Project demonstrated strong potential for community-driven WWS in a Tribal Nation. The health center plans to grow its WWS infrastructure to support sustained capacity for early detection and monitoring of infectious diseases linked to cancers and other diseases. With careful planning and community involvement, WWS is an additional tool that Tribal communities can use to save lives and promote health.

Supplemental Material