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.

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.

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.

Cramping, crashing, cannulating, and clotting: a qualitative study of patients' definitions of a "bad run" on hemodialysis.

BACKGROUND: Hemodialysis sessions frequently become unstable from complications such as intradialytic hypotension and untoward symptoms. Previous patient safety initiatives promote prevention of treatment complications; yet, they have placed little specific focus on avoidable session instability. A patient-centered definition of session instability grounded in patient experiences, and an understanding of patient perceptions of causes and solutions to instability, may enable such efforts. METHODS: Twenty-five participants participated in three focus groups and/or a survey. They were purposively sampled for variation in region of residence, and sensitivity to patient well-being. Focus group recordings were analyzed using descriptive coding, in vivo coding, and thematic analysis. RESULTS: Patients define unstable sessions ("bad runs") as those in which they experience severe discomfort or unanticipated events that interfere with their ability to receive therapy. Bad runs were characterized primarily by cramping, low blood pressure ("crashing"), cannulation-related difficulties ("bad sticks"), and clotting of the dialysis circuit or vascular access. Patients believed that cramping and crashing could be explained by both patient and clinician behavior: patient fluid consumption and providers' fluid removal goals. Patients felt that the responsibility for cannulation-related problems lay with dialysis staff, and they asked for different staff or self-cannulated as solutions. Clotting was viewed as an idiosyncratic issue with one's body, and perceived solutions were clinician-driven. Patients expressed concern about "bad runs" on their ability to achieve fluid balance. CONCLUSIONS: Findings point to novel priorities for efforts to enhance hemodialysis session stability, and areas in which patients can be supported to become involved in such efforts.

Using social media to assess the consumer nutrition environment: comparing Yelp reviews with a direct observation audit instrument for grocery stores.

OBJECTIVE: To examine the feasibility of using social media to assess the consumer nutrition environment by comparing sentiment expressed in Yelp reviews with information obtained from a direct observation audit instrument for grocery stores. DESIGN: Trained raters used the Nutrition Environment Measures Survey in Stores (NEMS-S) in 100 grocery stores from July 2015 to March 2016. Yelp reviews were available for sixty-nine of these stores and were retrieved in February 2017 using the Yelp Application Program Interface. A sentiment analysis was conducted to quantify the perceptions of the consumer nutrition environment in the review text. Pearson correlation coefficients (ρ) were used to compare NEMS-S scores with Yelp review text on food availability, quality, price and shopping experience. SETTING: Detroit, Michigan, USA.ParticipantsNone. RESULTS: Yelp reviews contained more comments about food availability and the overall shopping experience than food price and food quality. Negative sentiment about food prices in Yelp review text and the number of dollar signs on Yelp were positively correlated with observed food prices in stores (ρ=0·413 and 0·462, respectively). Stores with greater food availability were rated as more expensive on Yelp. Other aspects of the food store environment (e.g. overall quality and shopping experience) were captured only in Yelp. CONCLUSIONS: While Yelp cannot replace in-person audits for collecting detailed information on the availability, quality and cost of specific food items, Yelp holds promise as a cost-effective means to gather information on the overall cost, quality and experience of food stores, which may be relevant for nutrition outcomes.

Comparative Analysis of Recruitment Strategies in a Study of Men Who Have Sex with Men (MSM) in Metropolitan Detroit.

HIV/AIDS-related research requires recruitment of representative samples of MSM; yet, we know little about the comparative yield, diversity and cost-benefit tradeoffs between different recruitment venues. We compared 11 recruitment venues used for nine HIV prevention-related focus groups with MSM in Metropolitan Detroit. Of the 64 participants, 24 were clients recruited via an HIV/AIDS-focused nonprofit, 20 from Grindr advertisements, 6 from university-student email lists, and 5 from flyers/palmcards. Significantly more African-American, low-income and HIV-positive participants were recruited via the nonprofit. The best cost-benefit tradeoffs were for organizational Facebook posts, email groups, personal networking, and nonprofit recruitment. Grindr increased the size of the sample, though at greater expense. Facebook and Scruff advertisements and gay bar outreach represented greater costs than benefits. Only 11.6% of Grindr respondents attended the focus groups. A mix of online and offline recruitment venues can generate a large and diverse sample of MSM, but venue performance is uneven.

User acceptance of location-tracking technologies in health research: Implications for study design and data quality.

Research regarding place and health has undergone a revolution due to the availability of consumer-focused location-tracking devices that reveal fine-grained details of human mobility. Such research requires that participants accept such devices enough to use them in their daily lives. There is a need for a theoretically grounded understanding of acceptance of different location-tracking technology options, and its research implications. Guided by an extended Unified Theory of Acceptance and Use of Technology (UTAUT), we conducted a 28-day field study comparing 21 chronically ill people's acceptance of two leading, consumer-focused location-tracking technologies deployed for research purposes: (1) a location-enabled smartphone, and (2) a GPS watch/activity tracker. Participants used both, and completed two surveys and qualitative interviews. Findings revealed that all participants exerted effort to facilitate data capture, such as by incorporating devices into daily routines and developing workarounds to keep devices functioning. Nevertheless, the smartphone was perceived to be significantly easier and posed fewer usability challenges for participants than the watch. Older participants found the watch significantly more difficult to use. For both devices, effort expectancy was significantly associated with future willingness to participate in research although prosocial motivations overcame some concerns. Social influence, performance expectancy and use behavior were significantly associated with intentions to use the devices in participants' personal lives. Data gathered via the smartphone was significantly more complete than data gathered via the watch, primarily due to usability challenges. To make longer-term participation in location tracking research a reality, and to achieve complete data capture, researchers must minimize the effort involved in participation; this requires usable devices. For long-term location-tracking studies using similar devices, findings indicate that only smartphone-based tracking is up to the challenge.

Using Social Media to Identify Sources of Healthy Food in Urban Neighborhoods.

An established body of research has used secondary data sources (such as proprietary business databases) to demonstrate the importance of the neighborhood food environment for multiple health outcomes. However, documenting food availability using secondary sources in low-income urban neighborhoods can be particularly challenging since small businesses play a crucial role in food availability. These small businesses are typically underrepresented in national databases, which rely on secondary sources to develop data for marketing purposes. Using social media and other crowdsourced data to account for these smaller businesses holds promise, but the quality of these data remains unknown. This paper compares the quality of full-line grocery store information from Yelp, a crowdsourced content service, to a "ground truth" data set (Detroit Food Map) and a commercially-available dataset (Reference USA) for the greater Detroit area. Results suggest that Yelp is more accurate than Reference USA in identifying healthy food stores in urban areas. Researchers investigating the relationship between the nutrition environment and health may consider Yelp as a reliable and valid source for identifying sources of healthy food in urban environments.

HIV Testing Behavior and Social Network Characteristics and Functions Among Young Men Who have Sex with Men (YMSM) in Metropolitan Detroit.

HIV testing promotion is a critical HIV prevention strategy, especially among at-risk groups such as young men who have sex with men (YMSM). Based on a web survey of 194 YMSM (18-24), we examine the association of social network characteristics and functions, and of individual-level characteristics, with three HIV testing behaviors (ever, repeat, and recent testing). Network homophily was associated with recent testing in multivariable models. The network function of information acquisition was associated with ever testing and repeat testing. Perceived stigma regarding HIV-related help-seeking was negatively related to recent testing. Individual characteristics were associated with testing outcomes in all models; age, perceived behavioral control, and positive attitudes had the greatest influence. Individual characteristics had a stronger association with ever testing and repeat testing than network characteristics and functions; however, this relationship was reversed for recent testing. Findings support the value of multi-level and network-focused interventions for promoting HIV testing among YMSM.

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.

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.

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.

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.

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.

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.

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.

"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.

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.