Perspectives on the role of industry in informatics research and authorship.

OBJECTIVES: Advances in informatics research come from academic, nonprofit, and for-profit industry organizations, and from academic-industry partnerships. While scientific studies of commercial products may offer critical lessons for the field, manuscripts authored by industry scientists are sometimes categorically rejected. We review historical context, community perceptions, and guidelines on informatics authorship. PROCESS: We convened an expert panel at the American Medical Informatics Association 2022 Annual Symposium to explore the role of industry in informatics research and authorship with community input. The panel summarized session themes and prepared recommendations. CONCLUSIONS: Authorship for informatics research, regardless of affiliation, should be determined by International Committee of Medical Journal Editors uniform requirements for authorship. All authors meeting criteria should be included, and categorical rejection based on author affiliation is unethical. Informatics research should be evaluated based on its scientific rigor; all sources of bias and conflicts of interest should be addressed through disclosure and, when possible, methodological mitigation.

Return of polygenic risk scores in research: Stakeholders' views on the eMERGE-IV study.

Research on polygenic risk scores (PRSs) for common, genetically complex chronic diseases aims to improve health-related predictions, tailor risk-reducing interventions, and improve health outcomes. Yet, the study and use of PRSs in clinical settings raise equity, clinical, and regulatory challenges that can be greater for individuals from historically marginalized racial, ethnic, and other minoritized communities. As part of the National Human Genome Research Institute-funded Electronic Medical Records and Genomics IV Network, we conducted online focus groups with patients/community members, clinicians, and members of institutional review boards to explore their views on key issues, including PRS research, return of PRS results, clinical translation, and barriers and facilitators to health behavioral changes in response to PRS results. Across stakeholder groups, our findings indicate support for PRS development and a strong interest in having PRS results returned to research participants. However, we also found multi-level barriers and significant differences in stakeholders' views about what is needed and possible for successful implementation. These include researcher-participant interaction formats, health and genomic literacy, and a range of structural barriers, such as financial instability, insurance coverage, and the absence of health-supporting infrastructure and affordable healthy food options in poorer neighborhoods. Our findings highlight the need to revisit and implement measures in PRS studies (e.g., incentives and resources for follow-up care), as well as system-level policies to promote equity in genomic research and health outcomes.

Mining the health disparities and minority health bibliome: A computational scoping review and gap analysis of 200,000+ articles.

Without comprehensive examination of available literature on health disparities and minority health (HDMH), the field is left vulnerable to disproportionately focus on specific populations or conditions, curtailing our ability to fully advance health equity. Using scalable open-source methods, we conducted a computational scoping review of more than 200,000 articles to investigate major populations, conditions, and themes as well as notable gaps. We also compared trends in studied conditions to their relative prevalence using insurance claims (42 million Americans). HDMH publications represent 1% of articles in Medical Literature Analysis and Retrieval System Online (MEDLINE). Most studies are observational in nature, although randomized trial reporting has increased fivefold in the past 20 years. Half of HDMH articles concentrate on only three disease groups (cancer, mental health, and endocrine/metabolic disorders), while hearing, vision, and skin-related conditions are among the least well represented despite substantial prevalence. To support further investigation, we present HDMH Monitor, an interactive dashboard and repository generated from the HDMH bibliome.

Participant-guided development of bilingual genomic educational infographics for Electronic Medical Records and Genomics Phase IV study.

OBJECTIVE: Developing targeted, culturally competent educational materials is critical for participant understanding of engagement in a large genomic study that uses computational pipelines to produce genome-informed risk assessments. MATERIALS AND METHODS: Guided by the Smerecnik framework that theorizes understanding of multifactorial genetic disease through 3 knowledge types, we developed English and Spanish infographics for individuals enrolled in the Electronic Medical Records and Genomics Network. Infographics were developed to explain concepts in lay language and visualizations. We conducted iterative sessions using a modified "think-aloud" process with 10 participants (6 English, 4 Spanish-speaking) to explore comprehension of and attitudes towards the infographics. RESULTS: We found that all but one participant had "awareness knowledge" of genetic disease risk factors upon viewing the infographics. Many participants had difficulty with "how-to" knowledge of applying genetic risk factors to specific monogenic and polygenic risks. Participant attitudes towards the iteratively-refined infographics indicated that design saturation was reached. DISCUSSION: There were several elements that contributed to the participants' comprehension (or misunderstanding) of the infographics. Visualization and iconography techniques best resonated with those who could draw on prior experiences or knowledge and were absent in those without. Limited graphicacy interfered with the understanding of absolute and relative risks when presented in graph format. Notably, narrative and storytelling theory that informed the creation of a vignette infographic was most accessible to all participants. CONCLUSION: Engagement with the intended audience who can identify strengths and points for improvement of the intervention is necessary to the development of effective infographics.

A pilot test of an infographic-based health communication intervention to enhance patient education among Latino persons with HIV.

OBJECTIVE: To pilot test an infographic-based health communication intervention that our team rigorously designed and explore whether its implementation leads to better health outcomes among Latino persons with HIV (PWH). MATERIALS AND METHODS: Latino PWH (N = 30) living in New York City received the intervention during health education sessions at 3 study visits that occurred approximately 3 months apart. At each visit, participants completed baseline or follow-up assessments and laboratory data were extracted from patient charts. We assessed 6 outcomes (HIV-related knowledge, self-efficacy to manage HIV, adherence to antiretroviral therapy, CD4 count, viral load, and current and overall health status) selected according to a conceptual model that describes pathways through which communication influences health outcomes. We assessed changes in outcomes over time using quantile and generalized linear regression models controlling for the coronavirus disease 2019 (COVID-19) research pause and new patient status (new/established) at the time of enrollment. RESULTS: Most participants were male (60%) and Spanish-speaking (60%); 40% of participants identified as Mixed Race/Mestizo, 13.3% as Black, 13.3% as White, and 33.3% as "other" race. Outcome measures generally improved after the second intervention exposure. Following the third intervention exposure (after the COVID-19 research pause), only the improvements in HIV-related knowledge and current health status were statistically significant. DISCUSSION AND CONCLUSION: Our infographic-based health communication intervention may lead to better health outcomes among Latino PWH, but larger trials are needed to establish efficacy. From this work, we contribute suggestions for effective infographic use for patient-provider communication to enhance patient education in clinical settings.

Mining the Health Disparities and Minority Health Bibliome: A Computational Scoping Review and Gap Analysis of 200,000+ Articles.

Without comprehensive examination of available literature on health disparities and minority health (HDMH), the field is left vulnerable to disproportionately focus on specific populations or conditions, curtailing our ability to fully advance health equity. Using scalable open-source methods, we conducted a computational scoping review of more than 200,000 articles to investigate major populations, conditions, and themes in the literature as well as notable gaps. We also compared trends in studied conditions to their relative prevalence in the general population using insurance claims (42MM Americans). HDMH publications represent 1% of articles in MEDLINE. Most studies are observational in nature, though randomized trial reporting has increased five-fold in the last twenty years. Half of all HDMH articles concentrate on only three disease groups (cancer, mental health, endocrine/metabolic disorders), while hearing, vision, and skin-related conditions are among the least well represented despite substantial prevalence. To support further investigation, we also present HDMH Monitor, an interactive dashboard and repository generated from the HDMH bibliome.

Examining COVID-19 testing and vaccination behaviors by heritage and linguistic preferences among Hispanic, Latino, or Spanish RADx-UP participants.

The Hispanic, Latino, or Spanish (hereafter, "Hispanic") populations in the U.S. bear a disproportionate burden of COVID-19-related outcomes, including disease incidence and mortality. Developing culturally appropriate national public health services for Hispanic persons remains a challenge. This study examined the association of heritage and language preference with COVID-19 testing (tested vs. not tested) and vaccination (vaccinated vs. not vaccinated) outcomes among Hispanic participants from 18 Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) projects (n = 3308; mean age = 44.1 years [SD = 14.9], 60% women; 83% spoke other than English at home). Generalized estimating equation models adjusted for age, gender, education level, income, insurance coverage, geographic region, comorbidities, and prior infection. Relative to Mexican heritage, individuals identifying as Puerto Rican or Dominican were more likely to test for COVID-19, and South American heritage was associated with higher testing and vaccination rates. Speaking Spanish or another language at home was associated with increased testing compared with speaking English at home for individuals who preferred not to report their heritage, and increased vaccination for those with Mexican, Cuban, or Central American heritage. This study highlights heterogeneity in testing and vaccination behaviors among Hispanic populations based on heritage and language preference, underscoring the diversity within the U.S. Hispanic community. In contrast to other studies on linguistic acculturation and health care utilization, our study found that a language other than English spoken at home was associated with greater vaccine uptake. That is, enculturation - the retention of Spanish language and presumably of Hispanic cultural norms - was linked with being vaccinated.

Evaluating and refining a pain quality information visualization tool with patients and interpreters to facilitate pain assessment in primary care settings.

Information visualization (InfoViz) tools offer a potential solution to pain communication challenges. Incongruencies in communication styles between patients with limited English proficiency (LEP), interpreters, and providers contribute to significant disparities in pain care and outcomes. This study's purpose is to evaluate and refine a culturally appropriate InfoViz pain quality assessment tool for LEP Hmong patients. We conducted a three-part iterative user-centered study with LEP Hmong, bilingual Hmong, and Hmong interpreters with (1) participatory design sessions to evaluate and refine pain infographics for inclusion on the tool, (2) card-sorting to organize the infographics to match the mental models of LEP patients, and (3) a tool assessment to identify which tool accurately represented LEP patients' mental models and was preferred in clinical settings. Fifty-five participants provided three common themes for pain infographics refinement: culturally-relevant colors, infographics resembling human anatomy, and action-specific squiggle lines. The card-sorting sessions revealed three organizational themes: sensation (n = 15; 71.4%), localization (n = 6; 28.6%), and severity of pain quality (n = 5; 24.3%). Most participants selected the localization as the most accurate tool and preferred it in clinical settings. Using a multi-step, user-centered approach resulted in a culturally appropriate pain InfoViz tool for LEP Hmong patients.