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
Background/Objectives: Financial distress from the direct and indirect costs of cancer treatment is a critical issue for many patients with breast cancer, particularly those from underserved populations who may be more vulnerable to financial hardship and its negative impacts on quality of life and clinical outcomes (i.e., financial toxicity). Few investigations, however, focus on protective factors that safeguard against financial toxicity. This study explores how social support might reduce financial toxicity among patients with breast cancer who are at high risk for financial hardship. Methods: We analyzed interviews with 41 adult women treated for stage I-IV breast cancer that had been conducted between December 2021 and March 2022. Our study specifically sampled women considered to be at elevated risk for financial toxicity: young adults aged 18–40 years old, Black women, women with lower incomes, and those residing in rural communities. We used deductive and inductive coding to identify themes related to social support. Results: Interviewees reported receiving support from family, friends, and their communities during their treatments. They noted how this social support helped with direct and indirect costs, encouraged emotional wellbeing, and safeguarded against economizing behaviors that offset spending (e.g., financial tradeoffs that jeopardize their treatment plan). Conclusions: Patients with breast cancer from groups vulnerable to financial toxicity often rely on the support of family, friends, and their communities to help buffer financial distress from the costs of treatment. These data highlight social support as an area for future studies exploring strategies to mitigate financial toxicity.
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.
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.
26 July 2024 in Journal of Substance Use and Addiction Treatment
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.