Objective We compare 5 health informatics research projects that applied community-based participatory research (CBPR) approaches with the goal of extending existing CBPR principles to address issues specific to health informatics research.Materials and methods We conducted a cross-case analysis of 5 diverse case studies with 1 common element: integration of CBPR approaches into health informatics research. After reviewing publications and other case-related materials, all coauthors engaged in collaborative discussions focused on CBPR. Researchers mapped each case to an existing CBPR framework, examined each case individually for success factors and barriers, and identified common patterns across cases.Results Benefits of applying CBPR approaches to health informatics research across the cases included the following: developing more relevant research with wider impact, greater engagement with diverse populations, improved internal validity, more rapid translation of research into action, and the development of people. Challenges of applying CBPR to health informatics research included requirements to develop strong, sustainable academic-community partnerships and mismatches related to cultural and temporal factors. Several technology-related challenges, including needs to define ownership of technology outputs and to build technical capacity with community partners, also emerged from our analysis. Finally, we created several principles that extended an existing CBPR framework to specifically address health informatics research requirements.Conclusions Our cross-case analysis yielded valuable insights regarding CBPR implementation in health informatics research and identified valuable lessons useful for future CBPR-based research. The benefits of applying CBPR approaches can be significant, particularly in engaging populations that are typically underserved by health care and in designing patient-facing technology.

Objective There are increasing efforts to capture psychosocial information in outpatient care in order to enhance health equity. To advance clinical decision support systems (CDSS), this study investigated which psychosocial information clinicians value, who values it, and when and how clinicians use this information for clinical decision-making in outpatient type 2 diabetes care. Materials and Methods This mixed methods study involved physician interviews (n = 17) and a survey of physicians, nurse practitioners (NPs), and diabetes educators (n = 198). We used the grounded theory approach to analyze interview data and descriptive statistics and tests of difference by clinician type for survey data. Results Participants viewed financial strain, mental health status, and life stressors as most important. NPs and diabetes educators perceived psychosocial information to be more important, and used it significantly more often for 1 decision, than did physicians. While some clinicians always used psychosocial information, others did so when patients were not doing well. Physicians used psychosocial information to judge patient capabilities, understanding, and needs; this informed assessment of the risks and the feasibility of options and patient needs. These assessments influenced 4 key clinical decisions. Discussion Triggers for psychosocially informed CDSS should include psychosocial screening results, new or newly diagnosed patients, and changes in patient status. CDSS should support cost-sensitive medication prescribing, and psychosocially based assessment of hypoglycemia risk. Electronic health records should capture rationales for care that do not conform to guidelines for panel management. NPs and diabetes educators are key stakeholders in psychosocially informed CDSS. Conclusion Findings highlight opportunities for psychosocially informed CDSS—a vital next step for improving health equity.

Adherence to treatment recommendations for chronic diseases is notoriously low across all patient populations. But African American patients, who are more likely to live in low-income neighborhoods and to have multiple chronic conditions, are even less likely to follow medical recommendations. Yet we know little about their contextually embedded, adherence-related experiences. We interviewed individuals (n = 37) with at least two of the following conditions: hypertension, diabetes, and chronic kidney disease. Using an "invisible work" theoretical framework, we outline the adherence work that arose in patients' common life circumstances. We found five types: constantly searching for better care, stretching medications, eating what I know, keeping myself alive, and trying to make it right. Adherence work was effortful, challenging, and addressed external contingencies present in high-poverty African American neighborhoods. This work was invisible within the health care system because participants lacked ongoing, trusting relationships with providers and rarely discussed challenges with them.

No abstract

Elders experience chronic disease disparities and barriers to access technology designed to support recommended self-management behaviors. Elders from racial minority groups are among those who experience particular disparities in chronic disease incidence, outcomes, and barriers to technology use. In order to investigate strategies to address barriers, the study team recruited elder African Americans with diabetes and young adults connected to the elders through naturally occurring familial or social networks. Participants attended a community-based health education session focused on enhancing self-efficacy for recommended self-management and using consumer-oriented technology accessible on their smartphones for self-management support. To assess enduring impact, the study team conducted a pilot study to investigate perceptions and use one month following the health education session. Both elders and young adults offered perspectives on what was effective in teaching elders how to use technology. Both age groups stressed that having patience was crucial, as is providing encouragement for the elders to try tasks on their own. Both elders and young adults also showed a statistically significant increase in aspirations to work together for additional intergenerational health and technology knowledge exchange. Several elder participants continued using technology that they first used during the session. This novel, pilot study describes how to promote self-management and technology use for individuals plagued by persistent chronic disease and technology use disparities.

The escalation of discourse on racial injustice prompts novel ideas to address the persistent lack of racial equity in LIS research. The underrepresentation of BIPOC perspectives contributes to the inequity. Applying the Community Based Participatory Research (CBPR) approach meaningfully engages BIPOC to help guide LIS investigations that identify evolving needs and concerns, such as how systematic racism may contribute to social justice issues like environmental and health inequity. Engaging with BIPOC, using the CBPR approach, can help address racial equity in LIS because it will result in increased racial representation which enables incorporation of the perspectives and priorities of BIPOC. This shift to greater engagement is imperative to respond to escalating attention to social injustice and ensure that these central issues are adequately reflected in LIS research. The discipline is positioned to help detail the drivers and implications of inequity and develop ways to address them. We underscore the importance of working across research disciplines by describing our CBPR experience engaging with BIPOC in LIS research. We highlight the perspectives of community partners who have over two decades of experience with community-based LIS research. We offer lessons learned to LIS researchers by describing the factors that make these initiatives successful and those which contribute to setbacks.

Objectives We examined racial/ethnic differences in prenatal antiretroviral (ARV) treatment among 3259 HIV-infected pregnant Medicaid enrollees. Methods We analyzed 2005–2007 Medicaid claims data from 14 southern states, comparing rates of not receiving ARVs and suboptimal versus optimal ARV therapy. Results More than one third (37.3%) had zero claims for ARV drugs. Three quarters (73.4%) of 346 Hispanic women received no prenatal ARVs. After we adjusted for covariates, Hispanic women had 3.89 (95% confidence interval = 2.58, 5.87) times the risk of not receiving ARVs compared with Whites. Hispanic women often had only 1 or 2 months of Medicaid eligibility, perhaps associated with barriers for immigrants. Less than 3 months of eligibility was strongly associated with nontreatment (adjusted odds ratio = 29.0; 95% confidence interval = 13.4, 62.7). Conclusions Optimal HIV treatment rates in pregnancy are a public health priority, especially for preventing transmission to infants. Medicaid has the surveillance and drug coverage to ensure that all HIV-infected pregnant women are offered treatment. States that offer emergency Medicaid coverage for only delivery services to pregnant immigrants are missing an opportunity to screen, diagnose, and treat pregnant women with HIV, and to prevent HIV in children.

No abstract