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BACKGROUND: Data dashboards are published tools that present visualizations; they are increasingly used to display data about behavioral health, social determinants of health, and chronic and infectious disease risks to inform or support public health endeavors. Dashboards can be an evidence-based approach used by communities to influence decision-making in health care for specific populations. Despite widespread use, evidence on how to best design and use dashboards in the public health realm is limited. There is also a notable dearth of studies that examine and document the complexity and heterogeneity of dashboards in community settings. OBJECTIVE: Community stakeholders engaged in the community response to the opioid overdose crisis could benefit from the use of data dashboards for decision-making. As part of the Communities That HEAL (CTH) intervention, community data dashboards were created for stakeholders to support decision-making. We assessed stakeholders' perceptions of the usability and use of the CTH dashboards for decision-making. METHODS: We conducted a mixed methods assessment between June and July 2021 on the use of CTH dashboards. We administered the System Usability Scale (SUS) and conducted semistructured group interviews with users in 33 communities across 4 states of the United States. The SUS comprises 10 five-point Likert-scale questions measuring usability, each scored from 0 to 4. The interview guides were informed by the technology adoption model (TAM) and focused on perceived usefulness, perceived ease of use, intention to use, and contextual factors. RESULTS: Overall, 62 users of the CTH dashboards completed the SUS and interviews. SUS scores (grand mean 73, SD 4.6) indicated that CTH dashboards were within the acceptable range for usability. From the qualitative interview data, we inductively created subthemes within the 4 dimensions of the TAM to contextualize stakeholders' perceptions of the dashboard's usefulness and ease of use, their intention to use, and contextual factors. These data also highlighted gaps in knowledge, design, and use, which could help focus efforts to improve the use and comprehension of dashboards by stakeholders. CONCLUSIONS: We present a set of prioritized gaps identified by our national group and list a set of lessons learned for improved data dashboard design and use for community stakeholders. Findings from our novel application of both the SUS and TAM provide insights and highlight important gaps and lessons learned to inform the design of data dashboards for use by decision-making community stakeholders. TRIAL REGISTRATION: ClinicalTrials.gov NCT04111939; https://clinicaltrials.gov/study/NCT04111939.

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Since its inception 30 years ago, Photovoice has gained increasing popularity as a research method and more recently has been incorporated within randomized controlled trial (RCT) designs. Photovoice is a participatory action research method that pairs photography with focus group discussions to record community strengths and concerns, build critical consciousness, and reach policymakers. Adherence of Photovoice implementation to these original tenets of Photovoice varies. This article provides the Photovoice protocol developed by the authors to improve the methodological rigor of Photovoice integration into RCTs and help contextualize the landscape for the HEALing Communities Study (HCS: NCT04111939), a greater than $350 million investment by the National Institute on Drug Abuse along with the Substance Abuse and Mental Health Services Administration to reduce opioid overdose deaths in 67 of the hardest-hit communities in four states (Kentucky, Massachusetts, New York, and Ohio). The product of a cross-state collaboration, this HCS Photovoice protocol provides ethical and methodological tools for incorporating Photovoice into RCT designs to enhance community engagement, communication campaigns, and data-driven decision-making about evidence-based practice selection and implementation.

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Data-informed decision making is a critical goal for many community-based public health research initiatives. However, community partners often encounter challenges when interacting with data. The Community-Engaged Data Science (CEDS) model offers a goal-oriented, iterative guide for communities to collaborate with research data scientists through data ambassadors. This study presents a case study of CEDS applied to research on the opioid epidemic in 18 counties in Ohio as part of the HEALing Communities Study (HCS). Data ambassadors provided a pivotal role in empowering community coalitions to translate data into action using key steps of CEDS which included: data landscapes identifying available data in the community; data action plans from logic models based on community data needs and gaps of data; data collection/sharing agreements; and data systems including portals and dashboards. Throughout the CEDS process, data ambassadors emphasized sustainable data workflows, supporting continued data engagement beyond the HCS. The implementation of CEDS in Ohio underscored the importance of relationship building, timing of implementation, understanding communities' data preferences, and flexibility when working with communities. Researchers should consider implementing CEDS and integrating a data ambassador in community-based research to enhance community data engagement and drive data-informed interventions to improve public health outcomes.

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BACKGROUND: There is increasing interest in using patient-generated health data (PGHD) to improve patient-centered care during pregnancy. However, little research has examined the perspectives of patients and providers as they report, collect, and use PGHD to inform obstetric care. OBJECTIVE: This study aims to explore the perspectives of patients and providers about the use of PGHD during pregnancy, including the benefits and challenges of reporting, collecting, and using these data, as well as considerations for expanding the use of PGHD to improve obstetric care. METHODS: We conducted one-on-one interviews with 30 pregnant or postpartum patients and 14 health care providers from 2 obstetrics clinics associated with an academic medical center. Semistructured interview guides included questions for patients about their experience and preferences for sharing PGHD and questions for providers about current processes for collecting PGHD, opportunities to improve or expand the collection of PGHD, and challenges faced when collecting and using this information. Interviews were conducted by phone or videoconference and were audio recorded, transcribed verbatim, and deidentified. Interview transcripts were analyzed deductively and inductively to characterize and explore themes in the data. RESULTS: Patients and providers described how PGHD, including physiologic measurements and experience of symptoms, were currently collected during and between in-person clinic visits for obstetric care. Both patients and providers reported positive perceptions about the collection and use of PGHD during pregnancy. Reported benefits of collecting PGHD included the potential to use data to directly inform patient care (eg, identify issues and adjust medication) and to encourage ongoing patient involvement in their care (eg, increase patient attention to their health). Patients and providers had suggestions for expanding the collection and use of PGHD during pregnancy, and providers also shared considerations about strategies that could be used to expand PGHD collection and use. These strategies included considering the roles of both patients and providers in reporting and interpreting PGHD. Providers also noted the need to consider the unintended consequences of using PGHD that should be anticipated and addressed. CONCLUSIONS: Acknowledging the challenges, suggestions, and considerations voiced by patients and providers can inform the development and implementation of strategies to effectively collect and use PGHD to support patient-centered care during pregnancy.

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PURPOSE: The rising cost of breast cancer treatment has increased patients' financial burden, intensifying an already stressful treatment process. Although researchers increasingly recognize the harmful impact of medical and nonmedical costs associated with cancer treatment, understanding patients' perspectives of financial toxicity is limited. We aimed to explore the topic of financial toxicity through the lived experiences of patients with breast cancer from groups at risk of social and economic marginalization. METHODS: We conducted semi-structured interviews with 50 women with breast cancer from four specific groups: Black women, Medicaid enrollees, rural residents, and women age ≤ 40. We transcribed, coded, and analyzed the data using deductive and inductive approaches. RESULTS: Two overarching themes captured patients' experiences of financial toxicity: short-term and long-term impacts. Short-term stressors included direct medical (e.g., co-pays, premiums), nonmedical (e.g., transportation, lodging), and indirect (e.g., job loss, reduced work hours) costs. Early in their treatments, patients' focus on survival took precedence over financial concerns. However, as the treatment course progressed, fear of consequences from compounding costs of care and financial distress negatively impacted patients' lifestyles and outlooks for the future. CONCLUSION: Programs addressing financial toxicity that look beyond early-phase interventions are needed. Specifically, patients struggling with the accumulation of treatment costs and the resultant stress require ongoing support. Long-term support is especially needed for groups vulnerable to financial instability and social marginalization.

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The COVID-19 pandemic poses a significant risk for immunosuppressed groups such as transplant patients. The purpose of this study was to improve our understanding of the impact of the COVID-19 pandemic on kidney transplant recipients, including their views on COVID-19 vaccination. Semi-structured interviews were conducted from December 2021 to August 2022 with 38 kidney transplant recipients who had an appointment with their transplant care team within the previous 6 months. We used qualitative thematic analysis to characterize the perspectives of interviewees. Regardless of COVID-19 vaccination status, most interviewees reported utilizing public health measures such as masking, hand washing, and avoiding crowds to protect themselves against COVID-19. Vaccinated interviewees (n = 31) noted that they chose to receive a COVID-19 vaccine because of their increased risk due to their immunocompromised state. For unvaccinated interviewees (n = 7), reasons for not receiving a COVID-19 vaccine included concerns about the safety and efficacy of the vaccine. Both vaccinated and unvaccinated interviewees expressed concerns about the lack of adequate testing of the vaccine in transplant patients and questioned if the vaccine might have unknown side effects for transplant recipients. Regardless of the vaccination status, most interviewees noted having trust in their healthcare team. Interviewees also described interpersonal tensions that arose during the pandemic, many of which surrounded vaccination and other preventive measures that were important to participants to protect their health. Together, these data demonstrate differing concerns and experiences related to the COVID-19 pandemic for vaccinated and unvaccinated transplant recipients. These findings highlight the unique needs of transplant recipients and reveal opportunities to support this vulnerable patient population in efforts to protect their health as the COVID-19 pandemic evolves.