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.

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.

What's Next for Modernizing Gender, Sex, and Sexual Orientation Terminology in Digital Health Systems? Viewpoint on Research and Implementation Priorities.

In 2021, Canada Health Infoway and the University of Victoria's Gender, Sex, and Sexual Orientation Research Team hosted a series of discussions to successfully and safely modernize gender, sex, and sexual orientation information practices within digital health systems. Five main topic areas were covered: (1) terminology standards; (2) digital health and electronic health record functions; (3) policy and practice implications; (4) primary care settings; and (5) acute and tertiary care settings. In this viewpoint paper, we provide priorities for future research and implementation projects and recommendations that emerged from these discussions.

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.

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.

Advancing digital patient-centered measurement methods for team-based care.

Objectives: To conceptualize new methods for integrating patient-centered measurement into team-based care. Methods: A standalone portal was introduced into a rural clinic to support conceptualization of new methods for integration of patient-centered measurement in team-based care. The portal housed mental health-related online resources, three patient-reported measures and a self-action plan. Six providers and four patients used the portal for four months. Our data collection techniques included clinic discussions, one-on-one interviews, workflow diagrams and data generated through the portal. Analysis was supported through coding interview transcripts, looking across multiple sources of research data and research team discussions. Results: Our research team conceptualized five team-based patient-centered measurement methods through this study. Patient-centered measurement Team Mapping offfers a technique to provide greater clarity of care-team roles and responsibilities in data collected through patient-centered measurement. Longitudinal Care Alignment can guide the care-team on incorporating patient-centered measurement into ongoing provider-patient interactions. Digital Tool Exploration can be used to evaluate a team's readiness toward digital tool adoption, and the impact of these tools. Team-based quality improvement serves as a framework for engaging teams in patient-centered quality improvement. Shared learning is a method that promotes patientprovider interactions that validate patient's perspectives of their care. Conclusion: The portal illuminated new methods for the integration of patient-centered measurement in team-based care. The first three proposed patient-centered measurement methods provides ways to assess how a clinic can incorporate patient-centered measurement methods into team-based care. The latter two methods focus on the aim of patient-generated data in which patient's values and perspectives are represented and quality of patient-centered care can be evaluated. Further testing is needed to assess the utility of these patient-centered measurement methods across different clinical settings and domains.

Correction: The State of Evidence in Patient Portals: Umbrella Review.

[This corrects the article DOI: 10.2196/23851.].

The State of Evidence in Patient Portals: Umbrella Review.

BACKGROUND: Patient portals have emerged as a recognized digital health strategy. To date, research on patient portals has grown rapidly. However, there has been limited evaluation of the growing body of evidence on portal availability, use, clinical or health behavior and outcomes, and portal adoption over time. OBJECTIVE: This paper aims to comprehensively consolidate the current state of evidence on patient portals using the umbrella review methodology, introduce our approach for evaluating evidence for quantitative and qualitative findings presented in included systematic reviews, and present a knowledge translation tool that can be used to inform all stages of patient portal adoption. METHODS: For this study, a modified version of the Joanna Briggs Institute umbrella review method was used. Multiple databases were searched for systematic reviews focused on patient portals, and the final sample included 14 reviews. We conducted a meta-level synthesis of findings from quantitative, qualitative, and mixed methods primary studies reported in systematic reviews. We organized the umbrella review findings according to the Clinical Adoption Meta-Model (CAMM). Vote-counting, GRADE (Grading of Recommendations, Assessment, Development, and Evaluations), and CERQual (Confidence in the Evidence from Review of Qualitative Research) were used to assess the umbrella review evidence. RESULTS: Our knowledge translation tool summarizes the findings in the form of an evidence map. Organized by the CAMM categories, the map describes the following factors that influence portal adoption and effects over time: patient contexts, patient's interest and satisfaction, portal design, facilitators and barriers, providers' attitudes, service utilization, behavioral effects, clinical outcomes, and patient-reported outcomes. The map lists the theories and mechanisms recognized in the included portal research while identifying the need for business models and organizational theories that can inform all stages of portal adoption. Our GRADE and CERQual umbrella review evaluation resulted in the majority of evidence being rated as moderate to low, which reflects methodological issues in portal research, insufficient number of studies, or mixed results in specific focus areas. The 2 findings with a high rating of evidence were patients' interest in using portals for communication and the importance of a simple display of information in the portals. Over 40 portal features were identified in the umbrella review, with communication through secure messaging and appointment booking mentioned in all systematic reviews. CONCLUSIONS: Our umbrella review provides a meta-level synthesis to make sense of the evidence on patient portals from published systematic reviews. Unsystematic and variable reporting of portal features undermines the ability to evaluate and compare portal effects and overlooks the specific context of portal use. Research designs sensitive to the social, organizational, policy, and temporal dimensions are needed to better understand the underlying mechanisms and context that leverage the identified factors to improve portal use and effects.

Qualitative Data Management and Analysis within a Data Repository.

Data repositories can support secure data management for multi-institutional and geographically dispersed research teams. Primarily designed to provide secure access, storage, and sharing of quantitative data, limited focus has been given to the unique considerations of data repositories for qualitative research. We share our experiences of using a data repository in a large qualitative nursing research study. Over a 27-month period, data collected by this 15-member team from 83 participants included photos, audio recordings and transcripts of interviews, and field notes. The data repository supported the secure collection, storage, and management of over 1,800 files with data. However, challenges were introduced during analysis that required negotiations about the structure and processes of the data repository. We discuss strengths and limitations of data repositories, and introduce practical strategies for developing a data management plan for qualitative research, which is supported through a data repository.

Is research on patient portals attuned to health equity? A scoping review.

OBJECTIVE: Our scoping review examined how research on patient portals addresses health equity. Questions guiding our review were: 1) What health equity concepts are addressed in patient portal research-both explicitly and implicitly? 2) What are the gaps? 3) Is the potential for ehealth-related health inequities explicitly acknowledged in studies on patient portals? 4) What novel approaches and interventions to reduce health inequities are tested in patient portal research? MATERIALS AND METHODS: We searched 4 databases. Search terms included "patient portal" in combination with a comprehensive list of health equity terms relevant in ehealth context. Authors independently reviewed the papers during initial screening and full-text review. We applied the eHealth Equity Framework to develop search terms and analyze the included studies. RESULTS: Based on eHealth Equity Framework categories, the main findings generated from 65 reviewed papers were governance structures, ehealth policies, and cultural and societal values may further inequities; social position of providers and patients introduces differential preferences in portal use; equitable portal implementation can be supported through diverse user-centered design; and intermediary strategies are typically recommended to encourage portal use across populations. DISCUSSION: The predominant focus on barriers in portal use may be inadvertently placing individual responsibility in addressing these barriers on patients already experiencing the greatest health disparities. This approach may mask the impact of the socio-technical-economic-political context on outcomes for different populations. CONCLUSION: To support equitable health outcomes related to patient portals we need to look beyond intermediary initiatives and develop equitable strategies across policy, practice, research, and implementation.

Towards Developing an eHealth Equity Conceptual Framework.

Early implementation of electronic health records and patient portals had great promise of addressing the widening disparities in health. However, recent research has found that not only are these disparities persisting, but the differences in health outcomes between populations are increasing. Addressing this gap specific to ehealth calls for attention to health equity. Health equity approaches reveal the systematic and societal structures that contribute to preventable and unjust outcomes for different populations. To conceptualize and apply a health equity approach within ehealth, we propose the eHealth Equity Framework (eHEF). Derived from the World Health Organization's conceptual framework for actions on the social determinants of health, eHEF can be useful for public health practitioners, researchers, policymakers and information technology designers to keep health equity agenda at the forefront of all stages of health information technology lifecycle.

Translating Behavior Change Techniques to New Delivery Mediums.

The translation of successful behavior change interventions to new delivery mechanisms requires an understanding of the underlying concepts that led to its success. This has particular relevance when converting in-person interventions into remote technological applications. The active ingredients that may have been successful in the "live" application can appear differently in a technological application. The communication module within a multi-user telehealth kiosk will be used as an example of how behavior change techniques from a "live" intervention may be represented in an information technology-delivered intervention.