Patient experiences of methadone treatment changes during the first wave of COVID-19: a national community-driven survey.

BACKGROUND: During COVID-19, the Substance Abuse and Mental Health Services Administration (SAMHSA) allowed Methadone Maintenance Treatment (MMT) programs to relax in-person MMT requirements to reduce COVID-19 exposure. This study examines patient-reported changes to in-person methadone clinic attendance requirements during COVID-19. METHODS: From June 7, 2020, to July 15, 2020, a convenience sample of methadone patients (N = 392) were recruited in collaboration with National Survivors Union (NSU) in 43 states and Washington D.C. through social media (Facebook, Reddit, Twitter, and Web site pop-ups). The community-driven research (CDR) online survey collected information on how patient take-home methadone dosing and in-person drug testing, counseling, and clinic visit frequency changed prior to COVID-19 (before March 2020) to during COVID-19 (June and July 2020). RESULTS: During the study time period, the percentage of respondents receiving at least 14 days of take-home doses increased from 22 to 53%, while the percentage receiving one or no take-home doses decreased from 22.4% before COVID-19 to 10.2% during COVID-19. In-person counseling attendance decreased from 82.9% to 19.4%. While only 3.3% of respondents accessed counseling through telehealth before COVID-19, this percentage increased to 61.7% during COVID-19. Many respondents (41.3%) reported visiting their clinics in person once a week or more during COVID-19. CONCLUSIONS: During the first wave of COVID-19, methadone patients report decreased in-person clinic attendance and increased take-home doses and use of telehealth for counseling services. However, respondents reported considerable variations, and many were still required to make frequent in-person clinic visits, which put patients at risk of COVID-19 exposure. Relaxations of MMT in-person requirements during COVID-19 should be consistently implemented and made permanent, and patient experiences of these changes should be explored further.

Using Photovoice to Explore Quality of Life Factors of Adults With Crouzon Syndrome.

In the United States, one in 60,000 adults live with Crouzon Syndrome (CS) and facial malformations. Phenomenological studies about their lived experiences and quality of life are lacking. The purpose of this participatory action research study was to gain a richer understanding of the perceived biopsychosocial and socioecological factors that impact quality of life for adults living with CS using Photovoice. Another aim was to develop a conceptual framework of quality of life for those experiencing CS to enhance tailored health education and services. A purposeful sample of nine adults with CS were recruited from U.S. national surgery centers and support groups. Participants used photography to represent their experiences and participated in individual interviews and focus groups. Data were analyzed with the participants using thematic analysis, and 44 themes emerged which informed the development of a quality of life conceptual framework and action plan described in this article.

Evaluation of a water arsenic filter in a participatory intervention to reduce arsenic exposure in American Indian communities: The Strong Heart Water Study.

Many rural populations, including American Indian communities, that use private wells from groundwater for their source of drinking and cooking water are disproportionately exposed to elevated levels of arsenic. However, programs aimed at reducing arsenic in American Indian communities are limited. The Strong Heart Water Study (SHWS) is a randomized controlled trial aimed at reducing arsenic exposure among private well users in American Indian Northern Great Plains communities. The community-led SHWS program installed point-of-use (POU) arsenic filters in the kitchen sink of households, and health promoters delivered arsenic health communication programs. In this study we evaluated the efficacy of these POU arsenic filters in removing arsenic during the two-year installation period. Participants were randomized into two arms. In the first arm households received a POU arsenic filter, and 3 calls promoting filter use (SHWS mobile health (mHealth) & filter arm). The second arm received the same filter and phone calls, and 3 in-person home visits and 3 Facebook messages (SHWS intensive arm) for program delivery. Temporal variability in water arsenic concentrations from the main kitchen faucet was also evaluated. A total of 283 water samples were collected from 50 households with private wells from groundwater (139 filter and 144 kitchen faucet samples). Ninety-three percent of households followed after baseline had filter faucet water arsenic concentrations below the arsenic maximum contaminant level of 10 µg/L at the final visit during our 2 year study period with no difference between study arms (98 % in the intensive arm vs. 94 % in the mHealth & filter arm). No significant temporal variation in kitchen arsenic concentration was observed over the study period (intraclass correlation coefficient = 0.99). This study demonstrates that POU arsenic filters installed for the community participatory SHWS program were effective in reducing water arsenic concentration in study households in both arms, even with delivery of the POU arsenic filter and mHealth program only. Furthermore, we observed limited temporal variability of water arsenic concentrations from kitchen faucet samples collected over time from private wells in our study setting.

Community-driven research and capacity building to address environmental justice concerns with industrial air pollution in Curtis Bay, South Baltimore.

Introduction: Curtis Bay (CB) is an environmental justice (EJ) community in South Baltimore. With a high concentration of industrial polluters and compounding non-chemical stressors, CB has experienced socioeconomic, quality of life, and health burdens for over 100 years. Today, these polluters include the open-air CSX Coal Terminal, waste-to-energy incinerators, and heavy diesel traffic through residential areas. The Community of Curtis Bay Association, Free Your Voice, and South Baltimore Community Land Trust are local organizations enacting a vision for equitable, healthy, and community-led development without industrial encroachment. In response to community-identified EJ concerns and an explosion at the CSX Coal Terminal, CB community groups partnered with academic researchers to develop a community-driven hyperlocal air monitoring and capacity building approach. This paper describes this approach to characterizing hyperlocal air quality in CB, building bridges between community residents and regulatory agencies, and nurturing a cohesive and effective community-academic partnership toward EJ. Methods: Using hyperlocal air monitoring, we are collecting real-time air pollution (particulate matter, black carbon, and ground-level gas species) and meteorological data from 15 low-cost sensors in residential and industrial areas of CB. We also use trail cameras to record activities at the CSX Coal Terminal. We merge air pollution and industrial activity data to evaluate the following: overall air quality in CB, multi-air pollutant profiles of elevated events, spatiotemporal changes in air quality in the community, patterns of industrial activity, and potential correlations between air quality and observed industrial activity. Members of our partnership also lead a high school course educating students about the history and ongoing efforts of the EJ movement in their community. Students in this course learn how to employ qualitative and quantitative data collection and analysis methods to bring scientific support to community EJ concerns. Results and Discussion: Our hyperlocal air monitoring network and community-academic partnership are continuing to evolve and have already demonstrated the ability to respond to community-identified EJ issues with real-time data while developing future EJ leaders. Our reflections can assist other community and academic groups in developing strong and fruitful partnerships to address similar EJ issues.

Community Science as Resistance to Neoliberal Scientific Praxis.

Background: Flint is a site of resistance to neoliberalism specifically because of the actions of Flint residents. The impacts of this organizing are due, in part, to sustained efforts to reimagine how communities can contribute to scientific knowledge production. We argue that Flint residents' efforts to advance a community-driven research (CDR) agenda represent an important and successful resistance to neoliberal scientific regulatory practices. Methods: We present Flint as a case study in CDR as a form of resistance. This article uses participatory observation within community-based research and draws from the personal experiences of the research team as long-term and lifelong residents of Flint who were actively involved in different aspects of community mobilizing during the water crisis. Case Study: We highlight Flint's rich and sustained community-based participatory research history, resident-led data collection efforts to assess the environmental and health conditions, a resident-led effort to tell the story of the water crisis from the residents' perspective, and recent efforts to develop and advance a CDR model. Discussion: Community-led research efforts in Flint follow Leitner et al.'s typology of contesting neoliberalism through opting in to neoliberal science to advance community needs, collecting data to support direct opposition through protest and mobilization, creating alternative knowledge frames, and using CDR to disengage from the traditional scientific model. Conclusions: Through CDR, Flint residents work in direct resistance to the tacit integration of neoliberal values into science and alternatively advance community organizing as a key aspect of science toward environmental justice.

We are the researched, the researchers, and the discounted: The experiences of drug user activists as researchers.

In this commentary, activists from Urban Survivors Union, the United States national drug users union, discuss our experiences conducting research on methadone clinic adoption of relaxed SAMHSA guidelines during the COVID-19 epidemic. In particular, we focus on our interactions with academic researchers as a grassroots organization of criminalized people designing our own research. We describe the challenges we navigated to retain decision making powers over the research question, data analysis and interpretation, and dissemination. We find that our collaborations with academic researchers are often complicated by power imbalances and structural issues. In our experience as directly impacted people, even community based participatory research (CBPR) often sidelines us. Our eventual research approach demonstrates how our process transcends CBPR by becoming community driven research (CDR). We suggest several changes to the research process in order to propagate this model.

Research led by people who use drugs: centering the expertise of lived experience.

BACKGROUND: Research collaborations between people who use drugs (PWUD) and researchers are largely underutilized, despite the long history of successful, community-led harm reduction interventions and growing health disparities experienced by PWUD. PWUD play a critical role in identifying emerging issues in the drug market, as well as associated health behaviors and outcomes. As such, PWUD are well positioned to meaningfully participate in all aspects of the research process, including population of research questions, conceptualization of study design, and contextualization of findings. MAIN BODY: We argue PWUD embody unparalleled and current insight to drug use behaviors, including understanding of novel synthetic drug bodies and the dynamics at play in the drug market; they also hold intimate and trusting relationships with other PWUD. This perfectly situates PWUD to collaborate with researchers in investigation of drug use behaviors and development of harm reduction interventions. While PWUD have a history of mistrust with the medical community, community-led harm reduction organizations have earned their trust and are uniquely poised to facilitate research projects. We offer the North Carolina Survivors Union as one such example, having successfully conducted a number of projects with reputable research institutions. We also detail the fallacy of meaningful engagement posed by traditional mechanisms of capturing community voice. As a counter, we detail the framework developed and implemented by the union in hopes it may serve as guidance for other community-led organizations. We also situate research as a mechanism to diversify the job opportunities available to PWUD and offer a real-time example of the integration of these principles into public policy and direct service provision. CONCLUSION: In order to effectively mitigate the risks posed by the fluid and volatile drug market, research collaborations must empower PWUD to play meaningful roles in the entirety of the research process. Historically, the most effective harm reduction interventions have been born of the innovation and heart possessed by PWUD; during the current overdose crisis, there is no reason to believe they will not continue to be.

The Washington State Environmental Health Disparities Map: Development of a Community-Responsive Cumulative Impacts Assessment Tool.

Communities across Washington State have expressed the need for neighborhood-level information on the cumulative impact of environmental hazards and social conditions to illuminate disparities and address environmental justice issues. Many existing mapping tools have not explicitly integrated community voice and lived experience as an integral part of their development. The goals of this project were to create a new community-academic-government partnership to collect and summarize community concerns and to develop a publicly available mapping tool that ranks relative environmental health disparities for populations across Washington State. Using a community-driven framework, we developed the Washington Environmental Health Disparities Map, a cumulative environmental health impacts assessment tool. Nineteen regularly updated environmental and population indicators were integrated into the geospatial tool that allows for comparisons of the cumulative impacts between census tracts. This interactive map provides critical information for the public, agencies, policymakers, and community-based organizations to make informed decisions. The unique community-academic-government partnership and the community-driven framework can be used as a template for other environmental and social justice mapping endeavors.

MicroResearch--Finding sustainable solutions to local health challenges in East Africa.

The urgent need in Africa for research capacity building has been recognized by African leaders and governments for many years. However, lack of large research funding opportunities has been seen as a major obstacle to improving research capacity in precisely those countries that need it the most. Microfinance has shown that a small infusion of capital can "prime the pump" to creative local economic productivity. In a similar way, MicroResearch has proven effective in promoting a similar bottom-up strategy to find sustainable solutions to local health challenges through local community focused research. Specifically, MicroResearch through hands-on didactic courses, mentoring and small-scale research funding promotes small research projects that improve research skills across the entire health-care provider spectrum to unleash a culture of inquiry. This in turn stimulates health care providers to identify the locally most relevant obstacles that need to be overcome and implement locally feasible and sustainable solutions. MicroResearch is a bottom-up strategy proven effective at finding sustainable solutions to local health challenges.