Persistent inequitable design and implementation of patient portals for users at the margins.
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ABSTRACT: Objective
Diane Forsythe and other feminist scholars have long shown how system builders' tacit assumptions lead to the systematic erasure of certain users from the design process. In spite of this phenomena being known in the health informatics literature for decades, recent research shows how patient portals and electronic patients health records continue to reproduce health inequalities in Western societies. To better understand this discrepancy between scholarly awareness of such inequities and mainstream design, this study unravels the (conceptual) assumptions and practices of designers and others responsible for portal implementation in the Netherlands and how citizens living in vulnerable circumstances are included in this process.Materials and methods
We conducted semistructured interviews (n?=?24) and questionnaires (n?=?14) with portal designers, health professionals, and policy advisors.Results
In daily design practices, equity is seen as an "end-of-the-pipeline" concern. Respondents identify health care professionals rather than patients as their main users. If patients are included in the design, this generally entails patients in privileged positions. The needs of citizens living in vulnerable circumstances are not prioritized in design processes. Developers legitimize their focus with reference to the innovation-theoretical approach of the Diffusion of Innovations.Discussion and conclusion
Although feminist scholars have developed important understandings of the exclusion of citizens living in vulnerable circumstances from portal design, other academic efforts have profoundly shaped daily practices of portal development. Diane Forsythe would likely have taken up this discrepancy as a challenge by finding ways to translate these insights into mainstream systems design.
SUBMITTER: Goedhart NS
PROVIDER: S-EPMC7883982 | biostudies-literature | 2021 Feb
REPOSITORIES: biostudies-literature
Publications
Persistent inequitable design and implementation of patient portals for users at the margins.
Goedhart Nicole S NS Zuiderent-Jerak Teun T Woudstra Joey J Broerse Jacqueline E W JEW Betten Afke Wieke AW Dedding Christine C
Journal of the American Medical Informatics Association : JAMIA 20210201 2
<h4>Objective</h4>Diane Forsythe and other feminist scholars have long shown how system builders' tacit assumptions lead to the systematic erasure of certain users from the design process. In spite of this phenomena being known in the health informatics literature for decades, recent research shows how patient portals and electronic patients health records continue to reproduce health inequalities in Western societies. To better understand this discrepancy between scholarly awareness of such ine ...[more]
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Project description:BACKGROUND:Acceptance of Electronic patient portal (EPP) is instrumental for its success. Studies on users' acceptance in the Middle East region are scarce. This study aims to use the TAM as a framework to quantitatively describe potential users, diabetic and chronic high blood pressure patients and their providers, intention to use and factors influencing the intention to use EPP at AUBMC-FMC We concurrently test the internal construct validity and the reliability of the TAM. METHODS:A cross-sectional survey design and the vignette approach were used. For validation, we needed a minimum of 180 patients; all 35 attending physicians and 11 registered nurses were targeted. We used descriptive statistics to calculate the intention to use EPP and its determinants based on the TAM constructs. Exploratory factor analysis (EFA) and structural equation modeling (SEM) were employed to estimate significant path coefficients for patients only as the sample size of providers was too small. RESULTS:We had 199 patients, half intended to use EPP; 73% of providers (N = 17) intended to use EPP. Perceived ease of use and privacy concerns were significantly higher among providers than patients (Mean (M) = 0.77 vs M = 0.42 (CI: - 0.623; - 0.081)) and (M = 3.67 vs M = 2.13, CI: - 2.16; - 0.91) respectively; other constructs were not significantly different. Reliability of TAM revealed a Cronbach Alpha of α=.91. EFA showed that three components explained 73.48% of the variance: Behavioral Intention of Use (14.9%), Perceived Ease of Use (50.74%), Perceived Usefulness (7.84%). SEM found that perceived ease of use increased perceived usefulness (standardized regression weight = 0.49); perceived usefulness (0.51) had more predictive value than perceived ease of use (0.27) to explain the behavioral intention of use of the EPP. CONCLUSIONS:We found that providers valued the usefulness of EPP and were mostly intending to use it. This finding has yet to be tested in future studies testing actual use as intention and actual use may not be concordant. The intention to use among patients was lower than those reported in developed countries. We identified two factors that we need to address to increase use, namely perceived ease and usefulness, and proposed practical implications to address them; future research directions were also discussed.
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Project description:BackgroundElectronic health record (EHR) patient portals are designed to provide medical health records to patients. Using an EHR portal is expected to contribute to positive health outcomes and facilitate patient-provider communication.ObjectiveOur objective was to examine how portal users report using their portals and the factors associated with obtaining health information from the internet. We also examined the desired portal features, factors impacting users' trust in portals, and barriers to using portals.MethodsAn internet-based survey study was conducted using Amazon Mechanical Turk. All the participants were adults in the United States who used patient portals. The survey included questions about how the participants used their portals, what factors acted as barriers to using their portals, and how they used and how much they trusted other web-based health information sources as well as their portals. A logistic regression model was used to examine the factors influencing the participants' trust in their portals. Additionally, the desired features and design characteristics were identified to support the design of future portals.ResultsA total of 394 participants completed the survey. Most of the participants were less than 35 years old (212/394, 53.8%), with 36.3% (143/394) aged between 35 and 55 years, and 9.9% (39/394) aged above 55 years. Women accounted for 48.5% (191/394) of the survey participants. More than 78% (307/394) of the participants reported using portals at least monthly. The most common portal features used were viewing lab results, making appointments, and paying bills. Participants reported some barriers to portal use including data security and limited access to the internet. The results of a logistic regression model used to predict the trust in their portals suggest that those comfortable using their portals (odds ratio [OR] 7.97, 95% CI 1.11-57.32) thought that their portals were easy to use (OR 7.4, 95% CI 1.12-48.84), and frequent internet users (OR 43.72, 95% CI 1.83-1046.43) were more likely to trust their portals. Participants reporting that the portals were important in managing their health (OR 28.13, 95% CI 5.31-148.85) and that their portals were a valuable part of their health care (OR 6.75, 95% CI 1.51-30.11) were also more likely to trust their portals.ConclusionsThere are several factors that impact the trust of EHR patient portal users in their portals. Designing easily usable portals and considering these factors may be the most effective approach to improving trust in patient portals. The desired features and usability of portals are critical factors that contribute to users' trust in EHR portals.
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Project description:BackgroundWith the current proliferation of clinical information technologies internationally, patient portals are increasingly being adopted in health care. Research, conducted mostly in the United States, shows that oncology patients have a keen interest in portals to gain access to and track comprehensive personal health information. In Canada, patient portals are relatively new and research into their use and effects is currently emerging. There is a need to understand oncology patients' experiences of using eHealth tools and to ground these experiences in local sociopolitical contexts of technology implementation, while seeking to devise strategies to enhance portal benefits.ObjectiveThe purpose of this study was to explore the experiences of oncology patients and their family caregivers when using electronic patient portals to support their health care needs. We focused on how Alberta's unique, 2-portal context shapes experiences of early portal adopters and nonadopters, in anticipation of a province-wide rollout of a clinical information system in oncology facilities.MethodsThis qualitative descriptive study employed individual semistructured interviews and demographic surveys with 11 participants. Interviews were audio-recorded and transcribed verbatim. Data were analyzed thematically. The study was approved by the University of Alberta Human Research Ethics Board.ResultsParticipants currently living with nonactive cancer discussed an online patient portal as one among many tools (including the internet, phone, videoconferencing, print-out reports) available to make sense of their diagnosis and treatment, maintain connections with health care providers, and engage with information. In the Fall of 2020, most participants had access to 1 of 2 of Alberta's patient portals and identified ways in which this portal was supportive (or not) of their ongoing health care needs. Four major themes, reflecting the participants' broader concerns within which the portal use was occurring, were generated from the data: (1) experiencing doubt and the desire for transparency; (2) seeking to become an informed and active member of the health care team; (3) encountering complexity; and (4) emphasizing the importance of the patient-provider relationship.ConclusionsAlthough people diagnosed with cancer and their family caregivers considered an online patient portal as beneficial, they identified several areas that limit how portals support their oncology care. Providers of health care portals are invited to recognize these limitations and work toward addressing them.
| S-EPMC8663539 | biostudies-literature
Project description:Objectives:Patients have unique information needs to help them interpret and make decisions about laboratory test results they receive on web-based portals. However, current portals are not designed in a patient-centered way and little is known on how best to harness patients' information needs to inform user-centered interface design of portals. We designed a patient-facing laboratory test result interface prototype based on requirement elicitation research and used a mixed-methods approach to evaluate this interface. Methods:After designing an initial test result display prototype, we used multiple evaluation methods, including focus group review sessions, expert consultation, and user testing, to make iterative design changes. For the user testing component, we recruited 14 patient-users to collect and analyze three types of data: comments made during testing sessions, responses to post-session questionnaires, and system usability scores. Results:Our initial patient-centered interface design included visual ranges of laboratory values, nontechnical descriptions of the test and result, and access to features to help patients interpret and make decisions about their results. Findings from our evaluation resulted in 6 design iterations of the interface. Results from user testing indicate that the later versions of the interface fulfilled patient's information needs, were perceived as usable, and provided access to information and techniques that facilitated patient's ability to derive meaning from each test result. Conclusions:Requirement elicitation studies can inform the design of a patient-facing test result interface, but considerable user-centered design efforts are necessary to create an interface that patients find useful. To promote patient engagement, health information technology designers and developers can use similar approaches to enhance user-centered software design in patient portals.
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Project description:BackgroundWith the advent of electronic health record (EHR) systems, there is increasing attention on the EHR system with regard to its use in facilitating patients to play active roles in their care via secure patient portals. However, there is no systematic review to comprehensively address patient portal interventions and patient outcomes.ObjectiveThis study aimed to synthesize evidence with regard to the characteristics and psychobehavioral and clinical outcomes of patient portal interventions.MethodsIn November 2018, we conducted searches in 3 electronic databases, including PubMed, EMBASE, and Cumulative Index to Nursing and Allied Health Literature, and a total of 24 articles met the eligibility criteria.ResultsAll but 3 studies were conducted in the United States. The types of study designs varied, and samples predominantly involved non-Hispanic white and highly educated patients with sizes ranging from 50 to 22,703. Most of the portal interventions used tailored alerts or educational resources tailored to the patient's condition. Patient portal interventions lead to improvements in a wide range of psychobehavioral outcomes, such as health knowledge, self-efficacy, decision making, medication adherence, and preventive service use. Effects of patient portal interventions on clinical outcomes including blood pressure, glucose, cholesterol, and weight loss were mixed.ConclusionsPatient portal interventions were overall effective in improving a few psychological outcomes, medication adherence, and preventive service use. There was insufficient evidence to support the use of patient portals to improve clinical outcomes. Understanding the role of patient portals as an effective intervention strategy is an essential step to encourage patients to be actively engaged in their health care.
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Project description:BACKGROUND:The inclusion of patient portals into electronic health records in the inpatient setting lags behind progress in the outpatient setting. OBJECTIVE:The aim of this study was to understand patient perceptions of using a portal during an episode of acute care and explore patient-perceived barriers and facilitators to portal use during hospitalization. METHODS:We utilized a mixed methods approach to explore patient experiences in using the portal during hospitalization. All patients received a tablet with a brief tutorial, pre- and postuse surveys, and completed in-person semistructured interviews. Qualitative data were coded using thematic analysis to iteratively develop 18 codes that were integrated into 3 themes framed as patient recommendations to hospitals to improve engagement with the portal during acute care. Themes from these qualitative data guided our approach to the analysis of quantitative data. RESULTS:We enrolled 97 participants: 53 (53/97, 55%) women, 44 (44/97, 45%) nonwhite with an average age of 48 years (19-81 years), and the average length of hospitalization was 6.4 days. A total of 47 participants (47/97, 48%) had an active portal account, 59 participants (59/97, 61%) owned a smartphone, and 79 participants (79/97, 81%) accessed the internet daily. In total, 3 overarching themes emerged from the qualitative analysis of interviews with these patients during their hospital stay: (1) hospitals should provide both access to a device and bring-your-own-device platform to access the portal; (2) hospitals should provide an orientation both on how to use the device and how to use the portal; and (3) hospitals should ensure portal content is up to date and easy to understand. CONCLUSIONS:Patients independently and consistently identified basic needs for device and portal access, education, and usability. Hospitals should prioritize these areas to enable successful implementation of inpatient portals to promote greater patient engagement during acute care. TRIAL REGISTRATION:ClinicalTrials.gov NCT00102401; https://clinicaltrials.gov/ct2/show/NCT01970852.
| S-EPMC6996719 | biostudies-literature
Project description:BACKGROUND:Theoretical models help to explain or predict the adoption of electronic health (eHealth) technology and illustrate the complexity of the adoption process. These models provide insights into general factors that influence the use of eHealth technology. However, they do not give hospitals much actionable knowledge on how to facilitate the adoption process. OBJECTIVE:Our study aims to provide insights into patient portal adoption processes among patients and hospital staff, including health care professionals (HCPs), managers, and administrative clerks. Studying the experiences and views of stakeholders answers the following question: How can hospitals encourage patients and HCPs to adopt a patient portal? METHODS:We conducted 22 semistructured individual and group interviews (n=69) in 12 hospitals and four focus groups with members of national and seminational organizations and patient portal suppliers (n=53). RESULTS:The effort hospitals put into adopting patient portals can be split into three themes. First, inform patients and HCPs about the portal. This communication strategy has four objectives: users should (1) know about the portal, (2) know how the portal works, (3) know that action on the portal is required, and (4) know where to find help with the portal. Second, embed the patient portal in the daily routine of HCPs and management. This involves three forms of support: (1) hospital policy, (2) management by monitoring the numbers, and (3) a structured implementation strategy that includes all staff of one department. Third, try to adjust the portal to meet patients' needs to optimize user-friendliness in two ways: (1) use patients' feedback and (2) focus on optimizing for patients with special needs (eg, low literacy and low digital skills). CONCLUSIONS:Asking stakeholders what they have learned from their efforts to stimulate patient portal use in hospitals elicited rich insights into the adoption process. These insights are missing in the theoretical models. Therefore, our findings help to translate the relatively abstract factors one finds in theoretical models to the everyday pragmatics of eHealth projects in hospitals.
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Project description:ImportanceMany health care systems offer adolescents access to health information through online patient portals, but few studies have explored how to engage adolescents in using and benefiting from online portals.ObjectiveTo determine how US children's hospitals have attempted to encourage adolescent portal use, barriers to engaging adolescents, and ideal future goals for engagement.Design, setting, and participantsThis qualitative study performed structured qualitative interviews with informatics administrators from children's hospitals across the US between February and July 2022. Informatics administrators were employed by US health care systems that managed a children's hospital with at least 50 dedicated pediatrics beds. Data analysis was performed from November 2022 to January 2023.Main outcomes and measuresThis study used thematic analysis of (1) current steps that health care systems had taken to engage adolescents in using their online patient portals and (2) barriers to engaging adolescents and ideal future goals and outcomes of engagement.ResultsAmong 58 total interviews with 65 informatics administrators who represented 63 hospitals across 58 health care systems, 6 themes of approaches to engaging adolescents in portal use were identified: (1) promoting and educating adolescents about portal enrollment, (2) establishing workflows to support enrollment, (3) seeking and incorporating feedback, (4) creating a culture or environment supporting engagement, (5) increasing portal utility, and (6) limited efforts. Barriers to engaging adolescents in portal use related to either (1) stakeholder investment, interest, and capabilities or (2) intersecting technical, ethical, and legal factors. Participants identified 4 ideal future efforts to engage adolescents: (1) develop adaptable private means of communication with adolescents, (2) use adolescent-centric user design, (3) enhance promotion and education about portal use, and (4) simplify and adapt workflows to encourage enrollment. Participants described 3 ideal outcomes of this future engagement: (1) provide education about current health, (2) prepare for transition to adulthood, and (3) improve digital health education of adolescents.Conclusions and relevanceIn this qualitative study of informatics administrators, children's hospitals across the US were found to have varying degrees of efforts to engage adolescents in using their portals. Most of these efforts focused on supporting adolescent enrollment, but fewer efforts focused on making the portal useful and interesting to adolescents.
| S-EPMC10448298 | biostudies-literature
Project description:BackgroundPatient portals (ie, electronic personal health records tethered to institutional electronic health records) are recognized as a promising mechanism to support greater patient engagement, yet questions remain about how health care leaders, policy makers, and designers can encourage adoption of patient portals and what factors might contribute to sustained utilization.ObjectiveThe purposes of this state of the science review are to (1) present the definition, background, and how current literature addresses the encouragement and support of patient engagement through the patient portal, and (2) provide a summary of future directions for patient portal research and development to meaningfully impact patient engagement.MethodsWe reviewed literature from 2006 through 2014 in PubMed, Ovid Medline, and PsycInfo using the search terms "patient portal" OR "personal health record" OR "electronic personal health record". Final inclusion criterion dictated that studies report on the patient experience and/or ways that patients may be supported to make competent health care decisions and act on those decisions using patient portal functionality.ResultsWe found 120 studies that met the inclusion criteria. Based on the research questions, explicit and implicit aims of the studies, and related measures addressed, the studies were grouped into five major topics (patient adoption, provider endorsement, health literacy, usability, and utility). We discuss the findings and conclusions of studies that address the five topical areas.ConclusionsCurrent research has demonstrated that patients' interest and ability to use patient portals is strongly influenced by personal factors such age, ethnicity, education level, health literacy, health status, and role as a caregiver. Health care delivery factors, mainly provider endorsement and patient portal usability also contribute to patient's ability to engage through and with the patient portal. Future directions of research should focus on identifying specific populations and contextual considerations that would benefit most from a greater degree of patient engagement through a patient portal. Ultimately, adoption by patients and endorsement by providers will come when existing patient portal features align with patients' and providers' information needs and functionality.
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