Now Is the Time to Strengthen Government-Academic Data Infrastructures to Jump-Start Future Public Health Crisis Response.

During public health crises, the significance of rapid data sharing cannot be overstated. In attempts to accelerate COVID-19 pandemic responses, discussions within society and scholarly research have focused on data sharing among health care providers, across government departments at different levels, and on an international scale. A lesser-addressed yet equally important approach to sharing data during the COVID-19 pandemic and other crises involves cross-sector collaboration between government entities and academic researchers. Specifically, this refers to dedicated projects in which a government entity shares public health data with an academic research team for data analysis to receive data insights to inform policy. In this viewpoint, we identify and outline documented data sharing challenges in the context of COVID-19 and other public health crises, as well as broader crisis scenarios encompassing natural disasters and humanitarian emergencies. We then argue that government-academic data collaborations have the potential to alleviate these challenges, which should place them at the forefront of future research attention. In particular, for researchers, data collaborations with government entities should be considered part of the social infrastructure that bolsters their research efforts toward public health crisis response. Looking ahead, we propose a shift from ad hoc, intermittent collaborations to cultivating robust and enduring partnerships. Thus, we need to move beyond viewing government-academic data interactions as 1-time sharing events. Additionally, given the scarcity of scholarly exploration in this domain, we advocate for further investigation into the real-world practices and experiences related to sharing data from government sources with researchers during public health crises.

Enhancing the Cardiovascular Safety of Hemodialysis Care Using Multimodal Provider Education and Patient Activation Interventions: Protocol for a Cluster Randomized Controlled Trial.

BACKGROUND: End-stage kidney disease (ESKD) is treated with dialysis or kidney transplantation, with most patients with ESKD receiving in-center hemodialysis treatment. This life-saving treatment can result in cardiovascular and hemodynamic instability, with the most common form being low blood pressure during the dialysis treatment (intradialytic hypotension [IDH]). IDH is a complication of hemodialysis that can involve symptoms such as fatigue, nausea, cramping, and loss of consciousness. IDH increases risks of cardiovascular disease and ultimately hospitalizations and mortality. Provider-level and patient-level decisions influence the occurrence of IDH; thus, IDH may be preventable in routine hemodialysis care. OBJECTIVE: This study aims to evaluate the independent and comparative effectiveness of 2 interventions-one directed at hemodialysis providers and another for patients-in reducing the rate of IDH at hemodialysis facilities. In addition, the study will assess the effects of interventions on secondary patient-centered clinical outcomes and examine factors associated with a successful implementation of the interventions. METHODS: This study is a pragmatic, cluster randomized trial to be conducted in 20 hemodialysis facilities in the United States. Hemodialysis facilities will be randomized using a 2 × 2 factorial design, such that 5 sites will receive a multimodal provider education intervention, 5 sites will receive a patient activation intervention, 5 sites will receive both interventions, and 5 sites will receive none of the 2 interventions. The multimodal provider education intervention involved theory-informed team training and the use of a digital, tablet-based checklist to heighten attention to patient clinical factors associated with increased IDH risk. The patient activation intervention involves tablet-based, theory-informed patient education and peer mentoring. Patient outcomes will be monitored during a 12-week baseline period, followed by a 24-week intervention period and a 12-week postintervention follow-up period. The primary outcome of the study is the proportion of treatments with IDH, which will be aggregated at the facility level. Secondary outcomes include patient symptoms, fluid adherence, hemodialysis adherence, quality of life, hospitalizations, and mortality. RESULTS: This study is funded by the Patient-Centered Outcomes Research Institute and approved by the University of Michigan Medical School's institutional review board. The study began enrolling patients in January 2023. Initial feasibility data will be available in May 2023. Data collection will conclude in November 2024. CONCLUSIONS: The effects of provider and patient education on reducing the proportion of sessions with IDH and improving other patient-centered clinical outcomes will be evaluated, and the findings will be used to inform further improvements in patient care. Improving the stability of hemodialysis sessions is a critical concern for clinicians and patients with ESKD; the interventions targeted to providers and patients are predicted to lead to improvements in patient health and quality of life. TRIAL REGISTRATION: ClinicalTrials.gov NCT03171545; https://clinicaltrials.gov/ct2/show/NCT03171545. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/46187.

Uptake of and Engagement With an Online Sexual Health Intervention (HOPE eIntervention) Among African American Young Adults: Mixed Methods Study.

BACKGROUND: Regarding health technologies, African American young adults have low rates of uptake, ongoing usage, and engagement, which may widen sexual health inequalities. OBJECTIVE: We aimed to examine rates of uptake and ongoing usage, and factors influencing uptake, ongoing usage, and engagement for a consumer health informatics (CHI) intervention for HIV/sexually transmitted infection (STI) prevention among African American young adults, using the diffusion of innovation theory, trust-centered design framework, and O'Brien and Toms' model of engagement. METHODS: This community-based participatory mixed methods study included surveys at four time points (n=315; 280 African American participants) among young adults aged 18 to 24 years involved in a blended offline/online HIV/STI prevention intervention (HIV Outreach, Prevention, and Education [HOPE] eIntervention), which was described as a "HOPE party." Qualitative interviews were conducted with a subset of participants (n=19) after initial surveys and website server logs indicated low uptake and ongoing usage. A generalized linear mixed-effects model identified predictors of eIntervention uptake, server logs were summarized to describe use over time, and interview transcripts were coded and thematically analyzed to identify factors affecting uptake and engagement. RESULTS: Participants' initial self-reported eIntervention uptake was low, but increased significantly over time, although uptake never reached expectations. The most frequent activity was visiting the website. Demographic factors and HOPE party social network characteristics were not significantly correlated with uptake, although participant education and party network gender homophily approached significance. According to interviews, one factor driving uptake was the desire to share HIV/STI prevention information with others. Survey and interview results showed that technology access, perceived time, and institutional and technological trust were necessary conditions for uptake. Interviews revealed that factors undermining uptake were insufficient promotion and awareness building, and the platform of the intervention, with social media being less appealing due to previous negative experiences concerning discussion of sexuality on social media. During the interaction with the eIntervention, interview data showed that factors driving initial engagement were audience-targeted website esthetics and appealing visuals. Ongoing usage was impeded by insufficiently frequent updates. Similarly, lack of novelty drove disengagement, although a social media contest for sharing intervention content resulted in some re-engagement. CONCLUSIONS: To encourage uptake, CHI interventions for African American young adults can better leverage users' desires to share information about HIV/STI prevention with others. Ensuring implementation through trusted organizations is also important, though vigorous promotion is needed. Visual appeal and targeted content foster engagement at first, but ongoing usage may require continual content changes. A thorough analysis of CHI intervention use can inform the development of future interventions to promote uptake and engagement. To guide future analyses, we present an expanded uptake and engagement model for CHI interventions targeting African American young adults based on our empirical results.

How "community" matters for how people interact with information: mixed methods study of young men who have sex with other men.

BACKGROUND: We lack a systematic portrait of the relationship between community involvement and how people interact with information. Young men who have sex with men (YMSM) are a population for which these relationships are especially salient: their gay community involvement varies and their information technology use is high. YMSM under age 24 are also one of the US populations with the highest risk of HIV/AIDS. OBJECTIVE: To develop, test, and refine a model of gay community involvement (GCI) factors in human-information interaction (HII) as applied to HIV/AIDS information among YMSM, specifically examining the role of Internet use in GCI and HII. METHODS: Mixed methods included: 1) online questionnaire with 194 YMSM; and 2) qualitative interviews with 19 YMSM with high GCI levels. Recruitment utilized social media, dating websites, health clinics, bars/clubs, and public postings. The survey included questions regarding HIV/AIDS-related information acquisition and use patterns, gay community involvement, risk behaviors, and technology use. For survey data, we tested multiple linear regression models using a series of community- and information-related variables as dependent variables. Independent variables included community- and information-related variables and demographic covariates. We then conducted a recursive path analysis in order to estimate a final model, which we refined through a grounded theory analysis of qualitative interview data. RESULTS: Four community-related variables significantly predicted how people interact with information (HII variables): 1) gay community involvement (GCI), 2) social costs of information seeking, 3) network expertise accessibility, and 4) community relevance. GCI was associated with significantly lower perceived social costs of HIV/AIDS information seeking (R(2)=0.07). GCI and social costs significantly predicted network expertise accessibility (R(2)=0.14). GCI predicted 14% of the variance in community relevance and 9% of the variance in information seeking frequency. Incidental HIV/AIDS information acquisition (IIA) was also significantly predicted by GCI (R(2)=0.16). 28% of the variance in HIV/AIDS information use was explained by community relevance, network expertise access, and both IIA and information seeking. The final path model showed good fit: the RSMEA was 0.054 (90% CI: .000-.101); the Chi-square was non-significant (χ(2)(11)=17.105; P=.105); and the CFI was 0.967. Qualitative findings suggest that the model may be enhanced by including information sharing: organizing events, disseminating messages, encouraging safety, and referring and recommending. Information sharing emerged under conditions of pro-social community value enactment and may have consequences for further HII. YMSM with greater GCI generally used the Internet more, although they chatted online less. CONCLUSIONS: HIV/AIDS-related HII and associated technology uses are community-embedded processes. The model provides theoretical mediators that may serve as a focus for intervention: 1) valuing HIV/AIDS information, through believing it is relevant to one's group, and 2) supportive and knowledgeable network members with whom to talk about HIV/AIDS. Pro-social community value endorsement and information sharing may also be important theoretical mediators. Our model could open possibilities for considering how informatics interventions can also be designed as community-level interventions and vice versa.