Opportunities for incorporating intersectionality into biomedical informatics.

Many approaches in biomedical informatics (BMI) rely on the ability to define, gather, and manipulate biomedical data to support health through a cyclical research-practice lifecycle. Researchers within this field are often fortunate to work closely with healthcare and public health systems to influence data generation and capture and have access to a vast amount of biomedical data. Many informaticists also have the expertise to engage with stakeholders, develop new methods and applications, and influence policy. However, research and policy that explicitly seeks to address the systemic drivers of health would more effectively support health. Intersectionality is a theoretical framework that can facilitate such research. It holds that individual human experiences reflect larger socio-structural level systems of privilege and oppression, and cannot be truly understood if these systems are examined in isolation. Intersectionality explicitly accounts for the interrelated nature of systems of privilege and oppression, providing a lens through which to examine and challenge inequities. In this paper, we propose intersectionality as an intervention into how we conduct BMI research. We begin by discussing intersectionality's history and core principles as they apply to BMI. We then elaborate on the potential for intersectionality to stimulate BMI research. Specifically, we posit that our efforts in BMI to improve health should address intersectionality's five key considerations: (1) systems of privilege and oppression that shape health; (2) the interrelated nature of upstream health drivers; (3) the nuances of health outcomes within groups; (4) the problematic and power-laden nature of categories that we assign to people in research and in society; and (5) research to inform and support social change.

Virtual Care: Perspectives From Family Physicians.

BACKGROUND: During the COVID-19 pandemic, virtual care expanded rapidly at Michigan Medicine and other health systems. From family physicians' perspectives, this shift to virtual care has the potential to affect workflow, job satisfaction, and patient communication. As clinics reopened and care delivery models shifted to a combination of in-person and virtual care, the need to understand physician experiences with virtual care arose in order to improve both patient and provider experiences. This study investigated Michigan Medicine family medicine physicians' perceptions of virtual care through qualitative interviews to better understand how to improve the quality and effectiveness of virtual care for both patients and physicians. METHODS: We employed a qualitative descriptive design to examine physician perspectives through semistructured interviews. We coded and analyzed transcripts using thematic analysis, facilitated by MAXQDA (VERBI) software. RESULTS: The results of the analysis identified four major themes: (a) chief concerns that are appropriate for virtual evaluation, (b) physician perceptions of patient benefits, (c) focused but contextually enriched patient-physician communication, and (d) structural support needed for high-quality virtual care. CONCLUSIONS: These findings can help further direct the discussion of how to make use of resources to improve the quality and effectiveness of virtual care.

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.

Human technology intermediation to reduce cognitive load: understanding healthcare staff members' practices to facilitate telehealth access in a Federally Qualified Health Center patient population.

OBJECTIVES: The aim of this study was to investigate how healthcare staff intermediaries support Federally Qualified Health Center (FQHC) patients' access to telehealth, how their approaches reflect cognitive load theory (CLT) and determine which approaches FQHC patients find helpful and whether their perceptions suggest cognitive load (CL) reduction. MATERIALS AND METHODS: Semistructured interviews with staff (n = 9) and patients (n = 22) at an FQHC in a Midwestern state. First-cycle coding of interview transcripts was performed inductively to identify helping processes and participants' evaluations of them. Next, these inductive codes were mapped onto deductive codes from CLT. RESULTS: Staff intermediaries used 4 approaches to support access to, and usage of, video visits and patient portals for FQHC patients: (1) shielding patients from cognitive overload; (2) drawing from long-term memory; (3) supporting the development of schemas; and (4) reducing the extraneous load of negative emotions. These approaches could contribute to CL reduction and each was viewed as helpful to at least some patients. For patients, there were beneficial impacts on learning, emotions, and perceptions about the self and technology. Intermediation also resulted in successful visits despite challenges. DISCUSSION: Staff intermediaries made telehealth work for FQHC patients, and emotional support was crucial. Without prior training, staff discovered approaches that aligned with CLT and helped patients access technologies. Future healthcare intermediary interventions may benefit from the application of CLT in their design. Staff providing brief explanations about technical problems and solutions might help patients learn about technologies informally over time. CONCLUSION: CLT can help with developing intermediary approaches for facilitating telehealth access.

Social Acceptability of Health Behavior Posts on Social Media: An Experiment.

INTRODUCTION: Social media sites like Twitter (now X) are increasingly used to create health behavior metrics for public health surveillance. Yet little is known about social norms that may bias the content of posts about health behaviors. Social norms for posts about four health behaviors (smoking tobacco, drinking alcohol, physical activity, eating food) on Twitter/X were evaluated. METHODS: This was a randomized experiment delivered via web-based survey to adult, English-speaking Twitter/X users in three Michigan, USA, counties from 2020 to 2022 (n=559). Each participant viewed 24 posts presenting experimental manipulations regarding four health behaviors and answered questions about each post's social acceptability. Principal component analysis was used to combine survey responses into one perceived social acceptability measure. Linear mixed models with the Benjamini-Hochberg correction were implemented to test seven study hypotheses in 2023. RESULTS: Supporting six hypotheses, posts presenting healthier (CI: 0.028, 0.454), less stigmatized behaviors (CI: 0.552, 0.157) were more socially acceptable than posts regarding unhealthier, stigmatized behaviors. Unhealthy (CI: -0.268, -0.109) and stigmatized behavior (CI: -0.261, -0.103) posts were less acceptable for more educated participants. Posts about collocated activities (CI: 0.410, 0.573) and accompanied by expressions of liking (CI: 0.906, 1.11) were more acceptable than activities undertaken alone or disliked. Contrary to one hypothesis, posts reporting unusual activities were less acceptable than usual ones (CI: -0.472, 0.312). CONCLUSIONS: Perceived social acceptability may be associated with the frequency and content of health behavior posts. Users of Twitter/X and other social media platform posts to estimate health behavior prevalence should account for potential estimation biases from perceived social acceptability of posts.

From illness management to quality of life: rethinking consumer health informatics opportunities for progressive, potentially fatal illnesses.

OBJECTIVES: Investigate how people with chronic obstructive pulmonary disease (COPD)-an example of a progressive, potentially fatal illness-are using digital technologies (DTs) to address illness experiences, outcomes and social connectedness. MATERIALS AND METHODS: A transformative mixed methods study was conducted in Canada with people with COPD (n = 77) or with a progressive lung condition (n = 6). Stage-1 interviews (n = 7) informed the stage-2 survey. Survey responses (n = 80) facilitated the identification of participants for stage-3 interviews (n = 13). The interviews were thematically analyzed. Descriptive statistics were calculated for the survey. The integrative mixed method analysis involved mixing between and across the stages. RESULTS: Most COPD participants (87.0%) used DTs. However, few participants frequently used DTs to self-manage COPD. People used DTs to seek online information about COPD symptoms and treatments, but lacked tailored information about illness progression. Few expressed interest in using DTs for self- monitoring and tracking. The regular use of DTs for intergenerational connections may facilitate leaving a legacy and passing on traditions and memories. Use of DTs for leisure activities provided opportunities for connecting socially and for respite, reminiscing, distraction and spontaneity. DISCUSSION AND CONCLUSION: We advocate reconceptualizing consumer health technologies to prioritize quality of life for people with a progressive, potentially fatal illness. "Quality of life informatics" should focus on reducing stigma regarding illness and disability and taboo towards death, improving access to palliative care resources and encouraging experiences to support social, emotional and mental health. For DTs to support people with fatal, progressive illnesses, we must expand informatics strategies to quality of life.

Psychometric Evaluation of the Modes of Health Information Acquisition, Sharing, and Use Questionnaire: Prospective Cross-Sectional Observational Study.

BACKGROUND: Health information is a critical resource for individuals with health concerns and conditions, such as hypertension. Enhancing health information behaviors may help individuals to better manage chronic illness. The Modes of Health Information Acquisition, Sharing, and Use (MHIASU) is a 23-item questionnaire that measures how individuals with health risks or chronic illness acquire, share, and use health information. Yet this measure has not been psychometrically evaluated in a large national sample. OBJECTIVE: The objective of this study was to evaluate the psychometric properties of the self-administered MHIASU in a large, diverse cohort of individuals living with a chronic illness. METHODS: Sharing Information, a prospective, observational study, was launched in August 2018 and used social media campaigns to advertise to Black women. Individuals who were interested in participating clicked on the advertisements and were redirected to a Qualtrics eligibility screener. To meet eligibility criteria individuals had to self-identify as a Black woman, be diagnosed with hypertension by a health care provider, and live in the United States. A total of 320 Black women with hypertension successfully completed the eligibility screener and then completed a web-based version of the MHIASU questionnaire. We conducted a psychometric evaluation of the MHIASU using exploratory factor analysis. The evaluation included item review, construct validity, and reliability. RESULTS: Construct validity was established using exploratory factor analysis with principal axis factoring. The analysis was constricted to the expected domains. Interitem correlations were examined for possible item extraction. There were no improvements in factor structure with the removal of items with high interitem correlation (n=3), so all items of the MHIASU were retained. As anticipated, the instrument was found to have 3 subscales: acquisition, sharing, and use. Reliability was high for all 3 subscales, as evidenced by Cronbach α scores of .81 (acquisition), .81 (sharing), and .93 (use). Factor 3 (use of health information) explained the maximum variance (74%). CONCLUSIONS: Construct validity and reliability of the web-based, self-administered MHIASU was demonstrated in a large national cohort of Black women with hypertension. Although this sample was highly educated and may have had higher digital literacy compared to other samples not recruited via social media, the population captured (Black women living with hypertension) are often underrepresented in research and are particularly vulnerable to this chronic condition. Future studies can use the MHIASU to examine health information behavior in other diverse populations managing health concerns and conditions.

Identifying Inequities in Video and Audio Telehealth Services for Primary Care Encounters During COVID-19: Repeated Cross-Sectional, Observational Study.

BACKGROUND: The COVID-19 pandemic resulted in rapid changes in how patient care was provided, particularly through the expansion of telehealth and audio-only phone-based care. OBJECTIVE: The goal of this study was to evaluate inequities in video and audio-only care during various time points including the initial wave of the COVID-19 pandemic, later stages of the pandemic, and a historical control. We sought to understand the characteristics of care during this time for a variety of different groups of patients that may experience health care inequities. METHODS: We conducted a retrospective analysis of electronic health record (EHR) data from encounters from 34 family medicine and internal medicine primary care clinics in a large, Midwestern health system, using a repeated cross-sectional, observational study design. These data included patient demographic data, as well as encounter, diagnosis, and procedure records. Data were obtained for all in-person and telehealth encounters (including audio-only phone-based care) that occurred during 3 separate time periods: an initial COVID-19 period (T2: March 16, 2020, to May 3, 2020), a later COVID-19 period (T3: May 4, 2020, to September 30, 2020), and a historical control period from the previous year (T1: March 16, 2019, to September 30, 2019). Primary analysis focused on the status of each encounter in terms of whether it was completed as scheduled, it was canceled, or the patient missed the appointment. A secondary analysis was performed to evaluate the likelihood of an encounter being completed based on visit modality (phone, video, in-person). RESULTS: In total, there were 938,040 scheduled encounters during the 3 time periods, with 178,747 unique patients, that were included for analysis. Patients with completed encounters were more likely to be younger than 65 years old (71.8%-74.1%), be female (58.8%-61.8%), be White (75.6%-76.7%), and have no significant comorbidities (63.2%-66.8%) or disabilities (53.2%-61.1%) in all time periods than those who had only canceled or missed encounters. Effects on different subpopulations are discussed herein. CONCLUSIONS: Findings from this study demonstrate that primary care utilization across delivery modalities (in person, video, and phone) was not equivalent across all groups before and during the COVID-19 pandemic and different groups were differentially impacted at different points. Understanding how different groups of patients responded to these rapid changes and how health care inequities may have been affected is an important step in better understanding implementation strategies for digital solutions in the future.

Equity in virtual care: A mixed methods study of perspectives from physicians.

BACKGROUND: Virtual care expanded rapidly during the COVID-19 pandemic, and how this shift affected healthcare disparities among subgroups of patients is of concern. Racial and ethnic minorities, older adults, individuals with less education, and lower-income households have lower rates of home broadband, smartphone ownership, and patient portal adoption, which may directly affect access to virtual care. Because primary care is a major access point to healthcare, perspectives of primary care providers are critical to inform the implementation of equitable virtual care. OBJECTIVE: The aim of this mixed methods study was to explore primary care physician experiences and perceptions of barriers and facilitators to equitable virtual care. DESIGN: We used an explanatory sequential mixed methods design, which consists of first collecting and analyzing quantitative survey data, then using those results to inform a qualitative follow-up phase to explain and expand on results. PARTICIPANTS: Primary care physicians in a family medicine department at an academic medical center responded to surveys (n = 38) and participated in interviews (n = 16). APPROACH: Participants completed a survey concerning frequency and preferences about video visits, pros and cons of video visits, communication aspects, and sufficiency of the technology. A purposeful sample of participants completed semi-structured interviews about their virtual care experiences with a focus on equity for subpopulations. KEY RESULTS: The results indicated that physicians have observed equity issues for unique patient populations. The results add to the understanding of nuanced ways in which virtual care can increase and decrease healthcare access for unique populations. Patients with limited English proficiency were particularly affected by inequity in virtual care access. CONCLUSION: Additional research and interventions are needed to improve portal access for those with limited English proficiency. Improvements should focus on health system interventions that expand access without requiring increased patient burden.

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.

Equity and behavioral digital health interventions: Strategies to improve benefit and reach.

BACKGROUND: Behavioral digital health interventions (e.g., mobile apps, websites, wearables) have been applied widely to improve health outcomes. However, many groups (e.g., people with low income levels, people who are geographically isolated, older adults) may face obstacles to technology access and use. In addition, research has found that biases and stereotypes can be embedded within digital health interventions. As such, behavioral digital health interventions that intend to improve overall population health may unintentionally widen health-related inequities. PURPOSE: This commentary offers guidance and strategies to mitigate these risks when using technology as a means for delivering a behavioral health intervention. METHODS: A collaborative working group from Society of Behavioral Medicine's Health Equity Special Interest Group developed a framework to center equity in the development, testing and dissemination of behavioral digital health interventions. RESULTS: We introduce Partner, Identify, Demonstrate, Access, Report (PIDAR), a 5-point framework to avoid the creation, perpetuation, and/or widening of health inequities in behavioral digital health work. CONCLUSIONS: It is critically important to prioritize equity when conducting digital health research. The PIDAR framework can serve as a guide for behavioral scientists, clinicians and developers.

Behavioral digital health interventions have great potential to improve health. Unfortunately, many groups (e.g., people with low-income levels, people who are geographically isolated, older adults) may face significant obstacles to technology access, adoption and use. Additionally, research has found that biases and stereotypes can be embedded within digital health interventions. As such, behavioral digital health interventions that intend to improve overall population health may unintentionally widen health-related inequities. This commentary introduces the 5-point framework: Partner, Identify, Demonstrate, Access, Report (PIDAR) to be used in the development, testing and implementation of technology to avoid creating or worsening health inequities.

Targeting Patients' Cognitive Load for Telehealth Video Visits Through Student-Delivered Helping Sessions at a United States Federally Qualified Health Center: Equity-Focused, Mixed Methods Pilot Intervention Study.

BACKGROUND: The task complexity involved in connecting to telehealth video visits may disproportionately impact health care access in populations already experiencing inequities. Human intermediaries can be a strategy for addressing health care access disparities by acting as technology helpers to reduce the cognitive load demands required to learn and use patient-facing telehealth technologies. OBJECTIVE: We conducted a cognitive load theory-informed pilot intervention involving warm accompaniment telehealth helping sessions with patients at a Federally Qualified Health Center (FQHC). We demonstrate how to design and report recruitment methods, reach, delivery process, and the preliminary impact of a novel equity-focused intervention. METHODS: Early into the COVID-19 pandemic a telehealth helping session was offered to patients at FQHC via phone. Graduate students led the sessions on conducting a telehealth video test run or helping with patient portal log-in. They systematically recorded their recruitment efforts, intervention observations, and daily reflection notes. Following the intervention, we asked the intervention participants to participate in an interview and all patients who had telehealth visits during and 4 weeks before and after the intervention period to complete a survey. Electronic health records were reviewed to assess telehealth visit format changes. Descriptive and inferential statistical analyses of the recruitment records, electronic health record data, and surveys were performed. Through integrative analysis, we developed process-related themes and recommendations for future equity-focused telehealth interventions. RESULTS: Of the 239 eligible patients, 34 (14.2%) completed the intervention and 3 (1.2%) completed subsequent interviews. The intervention participants who completed the survey (n=15) had lower education and less technological experience than the nonintervention survey participants (n=113). We identified 3 helping strategies for cognitive load reduction: providing step-by-step guidance for configuring and learning, building rapport to create confidence while problem-solving, and being on the same page to counter informational distractions. Intervention participants reported increased understanding but found that learning the video visit software was more difficult than nonintervention participants. A comparison of visit experiences did not find differences in difficulty (cognitive load measure) using telehealth-related technologies, changes to visit modality, or reported technical problems during the visit. However, the intervention participants were significantly less satisfied with the video visits. CONCLUSIONS: Although a limited number of people participated in the intervention, it may have reached individuals more likely to need technology assistance. We postulate that significant differences between intervention and nonintervention participants were rooted in baseline differences between the groups' education level, technology experience, and technology use frequency; however, small sample sizes limit conclusions. The barriers encountered during the intervention suggest that patients at FQHC may require both improved access to web-based technologies and human intermediary support to make telehealth video visits feasible. Future large, randomized, equity-focused studies should investigate blended strategies to facilitate video visit access.

Provocations for Reimagining Informatics Approaches to Health Equity.

As the informatics community commits to the goal of advancing health equity, it is essential that we openly critique our current approaches and reimagine the ways in which we design, implement, evaluate, and advocate for policies related to informatics interventions. In this paper, we present five provocations as a starting point for building more conscientious informatics practice in service of this goal: 1) Health informatics interventions can create an "illusion of impactful action" without significant material benefits for marginalized patients, families, and communities; 2) Health informatics interventions target the wrong stakeholders, the wrong processes, and the wrong technologies to achieve equity; 3) Informaticians must conceptualize health literacy and other factors shaping patients' experiences as a system-level rather than individual-level characteristic; 4) Informatics interventions wrongly assume that interacting contextual factors can be meaningfully captured by over-simplified structured variables; and 5) Informatics interventions often specify the wrong system boundaries and solution space. We further assert that drastic shifts in our current practices will allow us to honor our claims of valuing patient-centered approaches, especially for marginalized communities.

Equitable Research PRAXIS: A Framework for Health Informatics Methods.

OBJECTIVES: There is growing attention to health equity in health informatics research. However, the literature lacks a comprehensive framework outlining critical considerations for health informatics research with marginalized groups. METHODS: Literature review and experiences from nine equity-focused health informatics conducted in the United States and Canada. Studies focus on disparities related to age, disability or chronic illness, gender/sex, place of residence (rural/urban), race/ethnicity, sexual orientation, and socioeconomic status. RESULTS: We found four key equity-related methodological considerations. To assist informaticists in addressing equity, we contribute a novel framework to synthesize these four considerations: PRAXIS (Participation and Representation, Appropriate methods and interventions, conteXtualization and structural competence, Investigation of Systematic differences). Participation and representation refers to the necessity for meaningful participation of marginalized groups in research, to elevate the voices of marginalized people, and to represent marginalized people as they are comfortable (e.g., asset-based versus deficit-based). Appropriate methods and interventions mean targeting methods, instruments, and interventions to reach and engage marginalized people. Contextualization and structural competence mean avoiding individualization of systematic disparities and targeting social conditions that (re-)produce inequities. Investigation of systematic differences highlights that experiences of people marginalized according to specific traits differ from those not so marginalized, and thus encourages studying the specificity of these differences and investigating and preventing intervention-generated inequality. We outline guidance for operationalizing these considerations at four research stages. CONCLUSIONS: This framework can assist informaticists in systematically addressing these considerations in their research in four research stages: project initiation; sampling and recruitment; data collection; and data analysis. We encourage others to use these insights from multiple studies to advance health equity in informatics.

Health informatics interventions to minimize out-of-pocket medication costs for patients: what providers want.

Objective: To explore diverse provider perspectives on: strategies for addressing patient medication cost barriers; patient medication cost information gaps; current medication cost-related informatics tools; and design features for future tool development. Materials and Methods: We conducted 38 semistructured interviews with providers (physicians, nurses, pharmacists, social workers, and administrators) in a Midwestern health system in the United States. We used 3 rounds of qualitative coding to identify themes. Results: Providers lacked access to information about: patients' ability to pay for medications; true costs of full medication regimens; and cost impacts of patient insurance changes. Some providers said that while existing cost-related tools were helpful, they contained unclear insurance information and several questioned the information's quality. Cost-related information was not available to everyone who needed it and was not always available when needed. Fragmentation of information across sources made cost-alleviation information difficult to access. Providers desired future tools to compare medication costs more directly; provide quick references on costs to facilitate clinical conversations; streamline medication resource referrals; and provide centrally accessible visual summaries of patient affordability challenges. Discussion: These findings can inform the next generation of informatics tools for minimizing patients' out-of-pocket costs. Future tools should support the work of a wider range of providers and situations and use cases than current tools do. Such tools would have the potential to improve prescribing decisions and better link patients to resources. Conclusion: Results identified opportunities to fill multidisciplinary providers' information gaps and ways in which new tools could better support medication affordability for patients.

The impact of stigma on HIV testing decisions for gay, bisexual, queer and other men who have sex with men: a qualitative study.

BACKGROUND: Stigmatization may prompt gay, bisexual, queer and other men who have sex with men (GBQMSM) to avoid or delay HIV testing. There has been little attention to GBQMSMs' perspectives about how stigma may influence their decisions about whether, where, and how often to get tested for HIV. METHODS: We conducted nine focus groups with 64 adult GBQMSM in Metropolitan Detroit, including HIV-negative men and people living with HIV (PLWH). Data were thematically analyzed deductively and inductively in three rounds. RESULTS: Three themes emerged regarding whether to get tested: (1) Perceived promiscuity, risk perceptions and HIV testing; (2) Fearing sexual rejection; and (3) Fearing friend and family member distancing and rejection. Themes concerning where to get tested included: (4) Conflating HIV testing and diagnosis; and (5) Seeking privacy and safety at specialized services. As for how often to get tested, themes included: (6) Reducing contact with healthcare providers due to intersectional stigma; (7) Responsibility and regular testing; and (8) HIV stigma and testing as routine care. Black participants articulated themes (3), (4), and (6) with greater frequency than other participants. Framing HIV testing as a personal responsibility may have created a "new stigma," with unintended consequences not observed with "routine healthcare" messaging. CONCLUSIONS: GBQMSMs' perspectives indicate the potential for new foci for HIV testing promotion interventions based on stigma-related issues that they deem important. There is a need for interventions to challenge the "promiscuity" stereotype, and to reduce the sexual stigmatization of GBQMSM living with HIV/AIDS-especially online. Provider stigma requires both intervention and continued availability of specialized services. Future stigma-reduction interventions for Black GBQMSM could focus on building family support/acceptance, awareness of multiple testing options, and integrating LGBTQ-related issues into initiatives for racial justice in health care.

"It's a mess sometimes": patient perspectives on provider responses to healthcare costs, and how informatics interventions can help support cost-sensitive care decisions.

OBJECTIVE: We investigated patient experiences with medication- and test-related cost conversations with healthcare providers to identify their preferences for future informatics tools to facilitate cost-sensitive care decisions. MATERIALS AND METHODS: We conducted 18 semistructured interviews with diverse patients (ages 24-81) in a Midwestern health system in the United States. We identified themes through 2 rounds of qualitative coding. RESULTS: Patients believed their providers could help reduce medication-related costs but did not see how providers could influence test-related costs. Patients viewed cost conversations about medications as beneficial when providers could adjust medical recommendations or provide resources. However, cost conversations did not always occur when patients felt they were needed. Consequently, patients faced a "cascade of work" to address affordability challenges. To prevent this, collaborative informatics tools could facilitate cost conversations and shared decision-making by providing information about a patient's financial constraints, enabling comparisons of medication/testing options, and addressing transportation logistics to facilitate patient follow-through. DISCUSSION: Like providers, patients want informatics tools that address patient out-of-pocket costs. They want to discuss healthcare costs to reduce the frequency of unaffordable costs and obtain proactive assistance. Informatics interventions could minimize the cascade of patient work through shared decision-making and preventative actions. Such tools might integrate information about efficacy, costs, and side effects to support decisions, present patient decision aids, facilitate coordination among healthcare units, and eventually improve patient outcomes. CONCLUSION: To prevent a burdensome cascade of work for patients, informatics tools could be designed to support cost conversations and decisions between patients and providers.

Guidance for publishing qualitative research in informatics.

Qualitative research, the analysis of nonquantitative and nonquantifiable data through methods such as interviews and observation, is integral to the field of biomedical and health informatics. To demonstrate the integrity and quality of their qualitative research, authors should report important elements of their work. This perspective article offers guidance about reporting components of the research, including theory, the research question, sampling, data collection methods, data analysis, results, and discussion. Addressing these points in the paper assists peer reviewers and readers in assessing the rigor of the work and its contribution to the literature. Clearer and more detailed reporting will ensure that qualitative research will continue to be published in informatics, helping researchers disseminate their understanding of people, organizations, context, and sociotechnical relationships as they relate to biomedical and health data.