Participatory Action Research to Explore the Role of Structural Violence on Marginalized and Racialized Young Parents.

Structural inequities influence young parents' access to health care, housing, transportation, social support, education, and income. The current study adds to the extant literature by providing data directly obtained in collaboration with young parents to understand how structural violence affects the health and well-being of their families, ultimately resulting in community-driven policy recommendations developed in collaboration with the state health department. We engaged a diverse sample of young people-considered as community researchers in the project-including Black, Latinx, and/or LGBTQ+ pregnant and parenting young parents in a participatory action research (PAR) project in the spring of 2022 to explore their health and material needs while living in Springfield, Massachusetts. Together with young parents, we used participatory arts-based methods to conduct community and identity building, define research questions and photo prompts, conduct data collection (photos), engage in group thematic analysis, and take action at the state policy level. We also conducted individual semi-structured life-history interviews with the young parents. Participatory community-led findings indicate an urgent need for systemic change to increase access to safe and affordable housing; living-wage jobs; safe, high-quality, and affordable child care; and to bolster social support and disabilities services for young parents and their families. This participatory study funded by a state health department demonstrates that participatory community-driven data can have the power to mobilize community members and policy makers for social change if prioritized at the state and local levels. Additional practice-based implications include prioritizing participatory mentorship programs intended to aid young parents in navigating the complex systems that are vital to their survival.

"And Then COVID Hits": A Qualitative Study of How Jails Adapted Services to Treat Opioid Use Disorder During COVID-19.

Background: Jails in Massachusetts are among the first nationwide to provide correctional populations with medications to treat opioid use disorder (MOUD). The COVID-19 pandemic caused jails to pivot and adapt MOUD programming. We aimed to identify adaptations and barriers to MOUD access that COVID-19 exacerbated or created, and document new elements that staff wish to sustain as COVID-19 recedes. Methods: We conducted semi-structured in-depth interviews and focus groups in 2020-2021 with 29 jail staff who implement MOUD programming in two Massachusetts jails. We conducted qualitative data analysis in Atlas.ti 8 using an inductive approach. Results: Participants shared that access to MOUD among correctional populations is understood by jail staff to be an essential health service. Thus, to facilitate continued access to MOUD, both during incarceration and also at community reentry, jail staff quickly implemented changes in MOUD regulations and dosing protocols and established telehealth capacity. Despite these program adaptations, participants identified how COVID-19 increased health and social needs among correctional populations, reduced availability of community-based healthcare and recovery-supportive services, and introduced new factors that could undermine recovery. Innovations that participants wished to sustain as COVID-19 receded included telehealth capacity, smaller-sized therapeutic groups, and application of a public health approach to treat opioid use disorder among correctional populations. Conclusions: During disruptive events, jails can adapt MOUD programming to ensure access for people living in jail and upon release. Findings identify factors for understanding the outcomes of jail-based MOUD programming during COVID-19 and highlight opportunities to improve service delivery after COVID-19.

The Massachusetts public health data warehouse and the opioid epidemic: A qualitative study of perceived strengths and limitations for advancing research.

Due to the opioid overdose epidemic, Massachusetts created a Public Health Data Warehouse, encompassing individually-linked administrative data on most of the population as provided by more than 20 systems. As others seek to assemble and mine big data on opioid use, there is a need to consider its research utility. To identify perceived strengths and limitations of administrative big data, we collected qualitative data in 2019 from 39 stakeholders with knowledge of the Massachusetts Public Health Data Warehouse. Perceived strengths included the ability to: (1) detect new and clinically significant relationships; (2) observe treatments and services across institutional boundaries, broadening understanding of risk and protective factors, treatment outcomes, and intervention effectiveness; (3) use geographic-specific lenses for community-level health; (4) conduct rigorous "real-world" research; and (5) generate impactful findings that legitimize the scope and impacts of the opioid epidemic and answer urgent questions. Limitations included: (1) oversimplified information and imprecise measures; (2) data access and analysis challenges; (3) static records and substantial lag times; and (4) blind spots that bias or confound results, mask upstream or root causes, and contribute to incomplete understanding. Using administrative big data to conduct research on the opioid epidemic offers advantages but also has limitations which, if unrecognized, may undermine its utility. Findings can help researchers to capitalize on the advantages of big data, and avoid inappropriate uses, and aid states that are assembling big data to guide public health practice and policy.

A qualitative study of big data and the opioid epidemic: recommendations for data governance.

BACKGROUND: The opioid epidemic has enabled rapid and unsurpassed use of big data on people with opioid use disorder to design initiatives to battle the public health crisis, generally without adequate input from impacted communities. Efforts informed by big data are saving lives, yielding significant benefits. Uses of big data may also undermine public trust in government and cause other unintended harms. OBJECTIVES: We aimed to identify concerns and recommendations regarding how to use big data on opioid use in ethical ways. METHODS: We conducted focus groups and interviews in 2019 with 39 big data stakeholders (gatekeepers, researchers, patient advocates) who had interest in or knowledge of the Public Health Data Warehouse maintained by the Massachusetts Department of Public Health. RESULTS: Concerns regarding big data on opioid use are rooted in potential privacy infringements due to linkage of previously distinct data systems, increased profiling and surveillance capabilities, limitless lifespan, and lack of explicit informed consent. Also problematic is the inability of affected groups to control how big data are used, the potential of big data to increase stigmatization and discrimination of those affected despite data anonymization, and uses that ignore or perpetuate biases. Participants support big data processes that protect and respect patients and society, ensure justice, and foster patient and public trust in public institutions. Recommendations for ethical big data governance offer ways to narrow the big data divide (e.g., prioritize health equity, set off-limits topics/methods, recognize blind spots), enact shared data governance (e.g., establish community advisory boards), cultivate public trust and earn social license for big data uses (e.g., institute safeguards and other stewardship responsibilities, engage the public, communicate the greater good), and refocus ethical approaches. CONCLUSIONS: Using big data to address the opioid epidemic poses ethical concerns which, if unaddressed, may undermine its benefits. Findings can inform guidelines on how to conduct ethical big data governance and in ways that protect and respect patients and society, ensure justice, and foster patient and public trust in public institutions.