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

Antonio, Marcy, G; Petrovskaya,, Olga; Lau,, Francis

doi:10.1093/jamia/ocz054

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

Antonio, Marcy, G;Petrovskaya,, Olga;Lau,, Francis 2019-08-01 00:00:00 Abstract 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. digital divide, ehealth, health equity, health literacy, patient portals, social determinants of health INTRODUCTION A health equity agenda has been pursued by governments and national and international organizations since the 1980s, notably by the World Health Organization (WHO).1–6,Health equity refers to the absence of avoidable and unfair inequalities in health.2 The WHO Commission on the Social Determinants of Health7,8 identifies the complex factors (eg, political context, socio-economic status, education, gender, race, and ethnicity) that can result in health disparities and the unequal provision of care and patient outcomes. With the advancement of health information and communication technologies (ie, ehealth),9 many commentators recognized the relevance of equity concerns to health outcomes experienced by ehealth consumers.10–16 For example, populations with a high burden of health disparities, who could potentially reap the greatest benefit from ehealth strategies, are in fact at further risk of being disadvantaged when policies and implementation of patient portals are not underpinned by explicit attention to health equity.17–19 In the United States, the Institute of Medicine report “Crossing the Quality Chasm”20 and the legislation encouraging “meaningful use” of electronic health records (EHRs)21 aimed to target health inequities/disparities as a foundational goal. This Meaningful Use (MU) legislation involved incentives for providers to offer patients timely access to their online health record and the ability to download their health information.21,22 EHRs contain patient information such as medical history, diagnoses, treatments, medications, immunizations, progress notes, clinical visit summaries, and laboratory results that can be shared with other authorized health care providers.23 The patient portal, or tethered personal health record, provides patients with secure online access to sections contained within the provider’s EHR and additionally may enable communicating with providers via online messaging and requesting prescription refills.24 Over the last decade, research literature addressing the effects of patient portals on patients, health care providers, and health service provision has been rapidly growing.25–31 Across multiple reviews, enhanced communication offered through patient portals was a frequent finding;26,28,30,31 whereas evidence was mixed as to whether portals improved patient health outcomes,25,27–29,31 and insufficient that portals support patient empowerment25 and reduce cost and health care utilization.27,31 A subset within this body of literature references health equity concepts in relation to demographic factors,27,29,30 health literacy,27,32 and the digital divide.12 A systematic review33 on the effectiveness of mobile health devices/applications among marginalized and low-income American groups contributed important insight into technology design features that increase the likelihood of positive health impacts among these groups. This recent review included studies only up to March 2016 and did not focus on patient portals. In the context of ehealth, despite the attention to health equity from policy-makers and selected researchers, there is lack of an overall understanding of how existing literature on patient portals has addressed health equity. Unless health equity considerations are embedded within all stages of the ehealth lifecycle, from design to end-user experiences, it will be challenging to bring to life an ideal vision of equitable ehealth. This scoping review examined how research on patient portals addresses health equity. Our questions were: What health equity concepts are addressed in patient portal research, both explicitly and implicitly? What are the gaps? Is the potential for ehealth-related health inequities explicitly acknowledged in the studies on patient portals? What novel approaches and interventions to reduce health inequities are evaluated in patient portal research? MATERIALS AND METHODS Theoretical Framework We applied the eHealth Equity Framework (eHEF) (see Figure 1), developed during the early stages of the scoping review. The eHEF builds upon the WHO CSDH framework7,8 and brings together the concepts of health equity, social determinants of health inequities, and ehealth. The eHEF incorporates technology throughout the framework to emphasize how 1) the socio-technical-economic-political contexts influence ehealth use and health outcomes; 2) a disadvantaged social position may be reinforced when underserved1 populations are not involved in ehealth implementation; and 3) the social determinants of inequities in health influence overall ehealth use. The eHEF categories and definitions are summarized in Supplementary File 1, and a full description of this framework is provided in an earlier publication.37 We used the eHEF concepts to devise a comprehensive list of search terms and analytical categories in structuring the “Results” section. Figure 1. View largeDownload slide eHealth Equity Framework (eHEF), adapted from Solar and Irwin’s8,9 Conceptual Framework for Action on the Social Determinants of Health. Figure 1. View largeDownload slide eHealth Equity Framework (eHEF), adapted from Solar and Irwin’s8,9 Conceptual Framework for Action on the Social Determinants of Health. Methodology Search Strategy Our review was informed by the Joanna Briggs Institute methodology on scoping reviews38 and PRISMA Extension for Scoping Reviews.39 Early in the process, we developed a protocol, which has been subsequently revised to reflect the iterative review process and registered with the Open Science Framework (https://osf.io/2sgbx/). Based on search strategies recommended by the librarian, in April 2018 we conducted a literature search in CINAHL, MEDLINE, Embase, and Scopus. Publications were not limited to dates and needed to be available in English. Gray literature was included if it was an implementation or practice brief. Conference proceedings, book chapters, and systematic reviews were excluded. The references within the systematic reviews were scanned to identify any additional papers. Our search focused on “patient portal” combined with health equity terms. This list was based on the eHEF concepts and recommendations in the PRISMA-Equity 2012 Extension.14 (See Supplementary File 2 and 3 for detailed search strategy and inclusion/exclusion criteria) Covidence® software was used to eliminate duplicates and to import and track citations. Authors MA and OP independently applied inclusion/exclusion criteria to screen 617 titles and abstracts and reviewed the full texts of the resulting 218 papers, and conflicts were resolved by consensus or by the third author (FL). Through this process we identified 127 papers as meeting inclusion criteria, and 2 additional articles were included from our manual search of systematic reviews. The updated search in early 2019 limited results to records added to the 4 databases between April 1 and December 31, 2018. After eliminating duplicates, 611 records were screened in Covidence®, and 33 papers met inclusion criteria and were added to our analysis. Thus, we had 162 papers in the final count (see Figure 2 for PRISMA flowchart). Figure 2. View largeDownload slide PRISMA flowchart. Figure 2. View largeDownload slide PRISMA flowchart. Closer examination of included articles produced 2 conceptually distinctive sets of material for analysis: 1) publications focused on phenomena identified in the eHEF as health equity concepts (eg, health literacy, digital divide) not limited to demographic factors and/or testing interventions to reduce inequities among portal users (n = 65); and 2) publications reporting the differences in portal use related to patient demographic factors as the only eHEF concept (n = 97). These 2 distinct data sources required different extraction tables and analytical strategies. Data were extracted and coded by the first author (MA) according to the eHEF categories37 and cross-checked by another reviewer. Considering the divergent nature and the volume of 2 data sets, in this article we report our analysis of publications from the first group. Findings on the relationship between patient demographics and portal use (ie, the second group of articles) will be reported in a separate article. RESULTS We included 65 papers in the review. Of the 56 papers that were focused on reporting research findings, 24 were quantitative,40–63 17 were qualitative,64–80 and 15 were mixed or multi-method.18,19,81–93 The remaining 9 papers were gray literature94–102 (see Figure 3 and Supplementary File 4). We also categorized papers by patient populations or demographic characteristics that were referenced within the title or abstract: a single paper examined nonenrolled patient portal population;53 8 papers focused on general patient populations;19,40,41,56,57,82,84,100,101 and 16 papers referenced safety net, vulnerable, and immigrant populations (ie, those referred to as “underserved” in the eHEF).18,45–47,49,59,63,64,66,70,72,75,81,85,87,96 Patient demographic characteristics included rural,74 low education,60,75 low-income/socioeconomic status,18,54,58–60,73,76,85,93 non-White,60 Blacks/African Americans,51,65,69 Hispanics/Latinos/Mexican Americans,42,48,59,65,69,81 adolescents,51,77,98 older adults,41,52,58,61,62,68,76,79,83,88,92,102 caregivers,40,66,68,70,79 post-partum/pregnant women,48,81,93 and LGBT.94 Health and disability conditions that were integral to the study design included respiratory illness,65,80,99 chronic disease/co-morbidities,58,71 diabetes,70,86,87,89,97 HIV/AIDS,44,45,50,55,78,90,91,95 hepatitis C,90 and intellectual disabilities.67 The majority of papers (34/65) were published in the last 2 years (see Figure 4). Figure 3. View largeDownload slide Summary of methods and demographics. Figure A represents all papers within review. Figures B-D display subsets of papers where the study aim included a focus on a specific population group, participant characteristic, or health condition or disability. Figure 3. View largeDownload slide Summary of methods and demographics. Figure A represents all papers within review. Figures B-D display subsets of papers where the study aim included a focus on a specific population group, participant characteristic, or health condition or disability. Figure 4. View largeDownload slide Journal articles addressing health equity in relation to patient portals, 2005–2018. Figure 4. View largeDownload slide Journal articles addressing health equity in relation to patient portals, 2005–2018. Our overall findings are: ehealth policies, governance structures, and cultural and societal values may introduce unequal portal awareness and access; social positions of health care providers and patients introduce differential preferences in portal use; equitable portal implementation can be supported through diverse user-centered design; and intermediary strategies are typically employed to encourage portal use across populations. Based on the eHEF categories, these findings are further detailed later and within Figure 5 and Table 1. Figure 5. View largeDownload slide Treemap of the Scope of the Literature (n = 65). The capitalized text represents eHEF categories. The lower case text represents the key topics found from analysis and application of the eHEF. The size of the box for each topic indicates the proportion of papers. Figure 5. View largeDownload slide Treemap of the Scope of the Literature (n = 65). The capitalized text represents eHEF categories. The lower case text represents the key topics found from analysis and application of the eHEF. The size of the box for each topic indicates the proportion of papers. Table 1. Scope of equitable approaches within patient portal research. The papers on patient portals listed below were selected to demonstrate how ehealth equity is conceptualized across policy, clinical practice, ehealth implementation, and ehealth use Ref# Country eHEF Focus Study type Main outcome 84 United States Governance Mixed methods - surveys interviews and focus groups, (n=84) An explanatory conceptual and explanatory process model from stakeholders’ perspectives on patient portals in an acute setting. The 10 barriers and 7 facilitators are based on perspectives from policy-makers, clinicians, and researchers with a recommendation for a cultural, paradigmatic shift in addressing health equity. 18 United States Policy Rapid ethnography- interviews (n=12), focus groups (n=35) & observations & a survey (n=45) The MU target was achieved, but the tension noted between meeting the MU certification and engaging with patients. Patient portals introduced unique concerns and/or risks for patients who had limited English, or who were undocumented immigrants or homeless. 46 United States Policy Retrospective cohort (n=129, 738) Change from opt-in to universal enrollment policy resulted in Black patients being just as likely to use portals as other racial groups. After the policy change, patients who were either publicly insured or uninsured remained less likely to use patient portals. 77 United States Policy Semi-structured interviews (n=25) Details proxy strategies for adolescents. Proxy policy decision was not determined by federal and state law, but instead by the technological capabilities, available resources, and different population needs. Additionally, authors found a tension between balancing adolescents’ autonomy and privacy and supporting shared–decision-making with family members. 73 United States Cultural Values and Perceptions In- depth interviews (n=20) Health care providers working with a low-income adult population expressed concerns with portals rather than benefits. Concerns included added anxiety and confusion for patients, increased practitioner workload, and portals’ potential for widening disparities. Providers commented on how patients lacked the technology skills to use portals—a belief that was compounded by patients reporting portals not being user-friendly and difficult to use. 72 United Kingdom Patients’ Social Position Surveys and focus groups (n=103) Concerns across multiple underserved patient populations included dispassionate presentation on information, furthering prejudices toward mental health, and the risk of unauthorized access by third party agencies. Patient advocates for patients with limited English commented on patients’ preference for written communication rather than oral. Patients who had trustful relationship with providers had positive attitudes towards portals. 42 United States Patients’ Social Position Cross-sectional survey (n=201) Participants (majority were Mexican-American) thought it was a good idea to view their medical information (93.5%). However, only half of participants (49.2%) believed it was a good idea to view these records online. Authors attributed this to lack of awareness and internet use rather than attitudinal barriers. 79 United States ehealth Implementation Qualitative descriptive study (n=40) Clinical summaries provided to older adults were found useful for sharing with family members and other health care providers. Majority of participants (76%) stated they would not go online to access clinical summaries, and preference was for a paper version. Based on participants’ feedback, 15 recommendations are offered to improve meaningful use of clinical summaries. 92 United States ehealth Implementation Multi-method (n=24) Preliminary findings in the development of video and audio layouts found older adults preferred a natural voice (over synthetic), although there was little difference in remembering and responding to the risk described within the delivered messages. 61 United States Intermediary Determinants Two-armed randomized controlled trial (n=272) The 3-week theory-based e-training program for older adults focused on patient portal knowledge, health decision-making, self-efficacy, health communication, and health literacy; it also included learning modules, discussion boards, and a virtual library. After 3 weeks, with the exception of portal use, the intervention group showed significant improvement. After 4 months, there was a decrease in intervention effects; however, there was significant improvement in self-efficacy and more frequent portal use for the intervention group. 45 United States Intermediary Determinants Cross-sectional study (n=338) The predominant engagement barrier among people with HIV/AIDS was baseline computer skills rather than the hypothesized mental health or substance use condition. For beginner computer users, the training program was not sufficient to enable them to use the portal. Ref# Country eHEF Focus Study type Main outcome 84 United States Governance Mixed methods - surveys interviews and focus groups, (n=84) An explanatory conceptual and explanatory process model from stakeholders’ perspectives on patient portals in an acute setting. The 10 barriers and 7 facilitators are based on perspectives from policy-makers, clinicians, and researchers with a recommendation for a cultural, paradigmatic shift in addressing health equity. 18 United States Policy Rapid ethnography- interviews (n=12), focus groups (n=35) & observations & a survey (n=45) The MU target was achieved, but the tension noted between meeting the MU certification and engaging with patients. Patient portals introduced unique concerns and/or risks for patients who had limited English, or who were undocumented immigrants or homeless. 46 United States Policy Retrospective cohort (n=129, 738) Change from opt-in to universal enrollment policy resulted in Black patients being just as likely to use portals as other racial groups. After the policy change, patients who were either publicly insured or uninsured remained less likely to use patient portals. 77 United States Policy Semi-structured interviews (n=25) Details proxy strategies for adolescents. Proxy policy decision was not determined by federal and state law, but instead by the technological capabilities, available resources, and different population needs. Additionally, authors found a tension between balancing adolescents’ autonomy and privacy and supporting shared–decision-making with family members. 73 United States Cultural Values and Perceptions In- depth interviews (n=20) Health care providers working with a low-income adult population expressed concerns with portals rather than benefits. Concerns included added anxiety and confusion for patients, increased practitioner workload, and portals’ potential for widening disparities. Providers commented on how patients lacked the technology skills to use portals—a belief that was compounded by patients reporting portals not being user-friendly and difficult to use. 72 United Kingdom Patients’ Social Position Surveys and focus groups (n=103) Concerns across multiple underserved patient populations included dispassionate presentation on information, furthering prejudices toward mental health, and the risk of unauthorized access by third party agencies. Patient advocates for patients with limited English commented on patients’ preference for written communication rather than oral. Patients who had trustful relationship with providers had positive attitudes towards portals. 42 United States Patients’ Social Position Cross-sectional survey (n=201) Participants (majority were Mexican-American) thought it was a good idea to view their medical information (93.5%). However, only half of participants (49.2%) believed it was a good idea to view these records online. Authors attributed this to lack of awareness and internet use rather than attitudinal barriers. 79 United States ehealth Implementation Qualitative descriptive study (n=40) Clinical summaries provided to older adults were found useful for sharing with family members and other health care providers. Majority of participants (76%) stated they would not go online to access clinical summaries, and preference was for a paper version. Based on participants’ feedback, 15 recommendations are offered to improve meaningful use of clinical summaries. 92 United States ehealth Implementation Multi-method (n=24) Preliminary findings in the development of video and audio layouts found older adults preferred a natural voice (over synthetic), although there was little difference in remembering and responding to the risk described within the delivered messages. 61 United States Intermediary Determinants Two-armed randomized controlled trial (n=272) The 3-week theory-based e-training program for older adults focused on patient portal knowledge, health decision-making, self-efficacy, health communication, and health literacy; it also included learning modules, discussion boards, and a virtual library. After 3 weeks, with the exception of portal use, the intervention group showed significant improvement. After 4 months, there was a decrease in intervention effects; however, there was significant improvement in self-efficacy and more frequent portal use for the intervention group. 45 United States Intermediary Determinants Cross-sectional study (n=338) The predominant engagement barrier among people with HIV/AIDS was baseline computer skills rather than the hypothesized mental health or substance use condition. For beginner computer users, the training program was not sufficient to enable them to use the portal. View Large Table 1. Scope of equitable approaches within patient portal research. The papers on patient portals listed below were selected to demonstrate how ehealth equity is conceptualized across policy, clinical practice, ehealth implementation, and ehealth use Ref# Country eHEF Focus Study type Main outcome 84 United States Governance Mixed methods - surveys interviews and focus groups, (n=84) An explanatory conceptual and explanatory process model from stakeholders’ perspectives on patient portals in an acute setting. The 10 barriers and 7 facilitators are based on perspectives from policy-makers, clinicians, and researchers with a recommendation for a cultural, paradigmatic shift in addressing health equity. 18 United States Policy Rapid ethnography- interviews (n=12), focus groups (n=35) & observations & a survey (n=45) The MU target was achieved, but the tension noted between meeting the MU certification and engaging with patients. Patient portals introduced unique concerns and/or risks for patients who had limited English, or who were undocumented immigrants or homeless. 46 United States Policy Retrospective cohort (n=129, 738) Change from opt-in to universal enrollment policy resulted in Black patients being just as likely to use portals as other racial groups. After the policy change, patients who were either publicly insured or uninsured remained less likely to use patient portals. 77 United States Policy Semi-structured interviews (n=25) Details proxy strategies for adolescents. Proxy policy decision was not determined by federal and state law, but instead by the technological capabilities, available resources, and different population needs. Additionally, authors found a tension between balancing adolescents’ autonomy and privacy and supporting shared–decision-making with family members. 73 United States Cultural Values and Perceptions In- depth interviews (n=20) Health care providers working with a low-income adult population expressed concerns with portals rather than benefits. Concerns included added anxiety and confusion for patients, increased practitioner workload, and portals’ potential for widening disparities. Providers commented on how patients lacked the technology skills to use portals—a belief that was compounded by patients reporting portals not being user-friendly and difficult to use. 72 United Kingdom Patients’ Social Position Surveys and focus groups (n=103) Concerns across multiple underserved patient populations included dispassionate presentation on information, furthering prejudices toward mental health, and the risk of unauthorized access by third party agencies. Patient advocates for patients with limited English commented on patients’ preference for written communication rather than oral. Patients who had trustful relationship with providers had positive attitudes towards portals. 42 United States Patients’ Social Position Cross-sectional survey (n=201) Participants (majority were Mexican-American) thought it was a good idea to view their medical information (93.5%). However, only half of participants (49.2%) believed it was a good idea to view these records online. Authors attributed this to lack of awareness and internet use rather than attitudinal barriers. 79 United States ehealth Implementation Qualitative descriptive study (n=40) Clinical summaries provided to older adults were found useful for sharing with family members and other health care providers. Majority of participants (76%) stated they would not go online to access clinical summaries, and preference was for a paper version. Based on participants’ feedback, 15 recommendations are offered to improve meaningful use of clinical summaries. 92 United States ehealth Implementation Multi-method (n=24) Preliminary findings in the development of video and audio layouts found older adults preferred a natural voice (over synthetic), although there was little difference in remembering and responding to the risk described within the delivered messages. 61 United States Intermediary Determinants Two-armed randomized controlled trial (n=272) The 3-week theory-based e-training program for older adults focused on patient portal knowledge, health decision-making, self-efficacy, health communication, and health literacy; it also included learning modules, discussion boards, and a virtual library. After 3 weeks, with the exception of portal use, the intervention group showed significant improvement. After 4 months, there was a decrease in intervention effects; however, there was significant improvement in self-efficacy and more frequent portal use for the intervention group. 45 United States Intermediary Determinants Cross-sectional study (n=338) The predominant engagement barrier among people with HIV/AIDS was baseline computer skills rather than the hypothesized mental health or substance use condition. For beginner computer users, the training program was not sufficient to enable them to use the portal. Ref# Country eHEF Focus Study type Main outcome 84 United States Governance Mixed methods - surveys interviews and focus groups, (n=84) An explanatory conceptual and explanatory process model from stakeholders’ perspectives on patient portals in an acute setting. The 10 barriers and 7 facilitators are based on perspectives from policy-makers, clinicians, and researchers with a recommendation for a cultural, paradigmatic shift in addressing health equity. 18 United States Policy Rapid ethnography- interviews (n=12), focus groups (n=35) & observations & a survey (n=45) The MU target was achieved, but the tension noted between meeting the MU certification and engaging with patients. Patient portals introduced unique concerns and/or risks for patients who had limited English, or who were undocumented immigrants or homeless. 46 United States Policy Retrospective cohort (n=129, 738) Change from opt-in to universal enrollment policy resulted in Black patients being just as likely to use portals as other racial groups. After the policy change, patients who were either publicly insured or uninsured remained less likely to use patient portals. 77 United States Policy Semi-structured interviews (n=25) Details proxy strategies for adolescents. Proxy policy decision was not determined by federal and state law, but instead by the technological capabilities, available resources, and different population needs. Additionally, authors found a tension between balancing adolescents’ autonomy and privacy and supporting shared–decision-making with family members. 73 United States Cultural Values and Perceptions In- depth interviews (n=20) Health care providers working with a low-income adult population expressed concerns with portals rather than benefits. Concerns included added anxiety and confusion for patients, increased practitioner workload, and portals’ potential for widening disparities. Providers commented on how patients lacked the technology skills to use portals—a belief that was compounded by patients reporting portals not being user-friendly and difficult to use. 72 United Kingdom Patients’ Social Position Surveys and focus groups (n=103) Concerns across multiple underserved patient populations included dispassionate presentation on information, furthering prejudices toward mental health, and the risk of unauthorized access by third party agencies. Patient advocates for patients with limited English commented on patients’ preference for written communication rather than oral. Patients who had trustful relationship with providers had positive attitudes towards portals. 42 United States Patients’ Social Position Cross-sectional survey (n=201) Participants (majority were Mexican-American) thought it was a good idea to view their medical information (93.5%). However, only half of participants (49.2%) believed it was a good idea to view these records online. Authors attributed this to lack of awareness and internet use rather than attitudinal barriers. 79 United States ehealth Implementation Qualitative descriptive study (n=40) Clinical summaries provided to older adults were found useful for sharing with family members and other health care providers. Majority of participants (76%) stated they would not go online to access clinical summaries, and preference was for a paper version. Based on participants’ feedback, 15 recommendations are offered to improve meaningful use of clinical summaries. 92 United States ehealth Implementation Multi-method (n=24) Preliminary findings in the development of video and audio layouts found older adults preferred a natural voice (over synthetic), although there was little difference in remembering and responding to the risk described within the delivered messages. 61 United States Intermediary Determinants Two-armed randomized controlled trial (n=272) The 3-week theory-based e-training program for older adults focused on patient portal knowledge, health decision-making, self-efficacy, health communication, and health literacy; it also included learning modules, discussion boards, and a virtual library. After 3 weeks, with the exception of portal use, the intervention group showed significant improvement. After 4 months, there was a decrease in intervention effects; however, there was significant improvement in self-efficacy and more frequent portal use for the intervention group. 45 United States Intermediary Determinants Cross-sectional study (n=338) The predominant engagement barrier among people with HIV/AIDS was baseline computer skills rather than the hypothesized mental health or substance use condition. For beginner computer users, the training program was not sufficient to enable them to use the portal. View Large Policy and governance The disconnect between policy-makers and health care providers,19 and interpretation and implementation on standards and strategies19,96 specific to patient portals may be furthering inequities. Although some providers saw the potential of portals in enhancing communication and information-sharing,73 other providers identified barriers including limited time,59,64 funding,64 reimbursement,59 and portal knowledge and familiarity.99 MU legislation unwittingly discouraged providers from promoting portals once they reached the 5% target;18 little focus was given to safety net populations impacted by the digital divide,18 and people with limited English,18,96 low-literacy levels,18,96 or living with a disability.96 In spite of existing legislation that supports patients’ timely access to their records, patients within underserved/low-literacy populations reported being refused access to their records.80,81 However, web standards and disability/discrimination legislation outside of the formal health care system could be used to advocate for change.96 Additionally, to represent the preferences of older adults and their families, 15 recommendations for meaningful use of clinical summaries have been proposed.79 Patients’ limited portal awareness was given as a reason for lack of enrollment.42,48,72,97 Recommendations to increase awareness included going beyond emailing out portal links83 and placing brochures in hospital lobbies;90 but rather to have on-site assistance,49,51 providers encourage portal use,49,80,93,97 and to offer demonstrations during unique opportunities (eg, in hospital and to postpartum Latino mothers after giving birth).48 Additionally, the promotion of patient portals has to match patients’ reading level,67 preferred device,69 and emphasize the features that are of greatest interest.53 The influence of policies on portal awareness and subsequent use was demonstrated in a retrospective cohort study (n = 129 738) across a general patient population.46 The initial opt-in policy resulted in decreased odds of patients being offered a portal access code during a clinic visit if they were older, male, Black, or Spanish-speaking, resulting in low rates of repeat portal use for these groups. After 4 years, when the policy switched to universal access, the differences in repeat portal use between Whites and Blacks disappeared.46 Societal and cultural values Health care providers’ prejudgments may further exclude populations that are already underserved or experience stigmatization and discrimination. Rather than a geographic “digital divide,” an age divide may be perpetuated within health care settings; administrators’ and clinicians’ perceptions that older, low-income adults were not tech-savvy contributed to portals not being embraced within the health care organization.73 Similarly, providers working with a socioeconomically disadvantaged population did not view portals as empowering, but rather saw these technologies as creating additional workload and problems.54 A more recent study with an underserved population found that patients may have high internet use, but may need encouragement from providers to see the value in tracking personal health information through patient portals.47 A practice brief on portal considerations for the LGBT community suggested that inadequate portal designs may reinforce prejudgments: the lack of portal fields that represent a person’s preferred gender could potentially result in insensitive care and discourage patients to return for follow-up clinic visits.94 Patients may also be concerned about how proxies76 and providers72 will respond to online health records that include diagnoses of stigmatized conditions. Yet, HIV patients reported that portal benefits outweighed the historical negative perceptions towards the illness, with appreciation for being able to share medical notes with other providers and friends.55 In a study focused on mental health and substance use within the HIV population, portals were suggested as a nonjudgmental place for people to address their substance use.50 Patients’ social position For this eHEF category, our analysis revealed concerns related to health care relationships, communication and quality of care, online medical notes, and privacy and security. The reviewed papers displayed a range of perspectives on how health care interactions and care supports may change with the introduction of patient portals. Some patients expressed interest in how the information within portals would enhance health care provider relationships,59,63,66,74,78 facilitate communication,49,71,75,80,88,91 support being taken more seriously during visits,80 equalize knowledge differentials,80 manage health,54,85, and address caregiver burden.66 However, other patients described undesirable changes to current services71 and provider relationships69,72,78 and stated preference for in person interactions.18,41,57,69,78,88 In person visits were important as a coping strategy in ensuring high quality care69 and provided social connections for homeless individuals.18 Some older adults said they did not want to feel pushed into using portals,79,83 and that they intended to use portals only when required.83 They reported satisfaction with existing clinic visits79 and viewed going online to check their medical records as an act of betrayal to their doctor.79 In contrast, another study found a strong interest in portal use among older adults to communicate; however, they were dissatisfied in providers’ limited responses to portal messages.62 In rural settings, portals were valued for reducing both disconnection with providers and discontinuity of care from high practitioner turnover.74 Access to online medical notes was a common portal feature examined.55,60,78,79,87 Multivariate analysis on a survey examining the importance of OpenNotes® (n = 6913) found that non-White, less-educated patients were significantly more likely to report that online medical notes were extremely helpful in engaging in care.60 Some HIV patients appreciated the candor of their providers’ notes, and did not find they impacted the relationship with their doctor,55 whereas others suggested that reading their health records online would be too shocking and make their illness too “real.”78 Hesitancy in reading online portal content was also noted in some studies as the information may be overwhelming,79 misinterpreted, alarming,88 or worrisome.80,87 Nonetheless, in order to support strong patient-provider relationships, the desire for transparent, full content medical notes was emphasized across safety net,87 Hispanic,60 and HIV populations.78 Patients had varying preferences for what lifestyle and personal information should be displayed80: some individuals did not want weight,79 past behaviors (eg, smoking),79 and older psychiatric events80 within their online medical notes. Multiple studies referenced patients’ privacy and security concerns in having their health information online;18,36,43,48,52,53,65,66,72,75,78–80,83,87 whereas some individuals perceived the information in their record would be of little interest to hackers66 and were willing to take the risk in accessing portals.52,72,75 However, other individuals reported hacking concerns,43,66,75,78,79 linking their distrust in patient portals to previous security breaches and computer viruses.66,72,80 Compared to Latinos, Black patients had greater concerns over the security of online medical records.69 In contrast, Latino patients near the Mexican-American border acknowledged value in tracking their medical records, but only half thought it was a good idea to have these records online.42 Additionally, older adults,52 advocates for vulnerable populations,72 immigrants,18,72,78 and HIV patients78 worried about how these online records could be used. Providers could use the records to screen out specific patients with complex health conditions.72 Privacy breaches87 and unauthorized portal access from government and insurance agencies52,80 could support surveillance of undocumented immigrants,18,72 and denial of medical claims,78 leading to further stigmatization for HIV patients.95 Specific recommendations to address privacy and security include using the TRUSTe security seal on home pages,69 giving patients ability to correct inaccuracies within portal records,87 and monitor who has accessed their records.19,76,78 Additionally, proxy settings should be adaptable, with different options for level of access and ability for patients to change consent for people who gain access.72 A “sealed envelope” or “break glass” approach can allow proxies to gain access to records after consent or in case of emergency.72,76 Ehealth implementation Usability issues in navigating and completing tasks within portals were found across multiple studies.43,62,75,85 Access and navigation barriers existed for people with physical,71 visual,96 neurocognitive,44 and intellectual disabilities.67 The usability issues experienced by general patient populations were also recognized, as portals have been designed and tethered to provider-centered EHR systems.69,101 To ensure that portals can be understood and optimized for all patient populations,57,62,67,85,96 diverse user-centered design was emphasized.18,85 Yet, our current user-centered strategies may not be reaching the underserved, less autonomous patient populations.70,102 User-centered testing inclusive of underserved populations can be promoted by having a stable point of contact to regularly communicate with participants, providing skills development for both participants and developers, and involving multidisciplinary teams and family caregivers.102 Patient feedback regarding portal content varied. Although there was appreciation for portal features, patients emphasized that the portal costs should be absorbed by the health care system80 in order to achieve fair, equitable use.89 A study with low-income pregnant women found that participants valued the health information provided through friends, families, and general internet sites, rather than what was provided within patient portals.93 Some found portal notes useful, but required more detail;87 whereas others reported personal health information as inaccurate,79,87 outdated,79,87 too long,87 confusing,87 and used too much complex language and medical jargon.62,75,79,81,85,87 Portals often required high numerical literacy.75,85 In an evaluation of content within linked portal sites, numeracy was poorly ranked with recognition that simpler language and explanations were required.56 Laboratory results lacked explanation and context79 and were difficult to interpret85 and understand.80,93 Often, portals were not offered in patients’ preferred language,18,59,66,79 which compounded digital and linguistic challenges.18 To increase the value and patient motivation in using patient portals information could be hyperlinked to educational and instructional material that could virtually extend the clinic visit,79 be more engaging by linking to previous patients’ experiences,93 and offer forums to connect with other people experiencing similar health issues.80,93 Strategies to improve the presentation of numerical and clinical data, included 1) reformatting genetic lab results that were more patient-friendly101 and 2) delivering portal messages through video, visual, audio formats,80,92 or text-to-speech programs.80 Other design recommendations included delivering content in clear, concise language67,80,85 and supporting people with limited English by presenting numerical data in written form rather than verbal.72 Intermediary determinants We found a relationship between portal use, health literacy, and patient characteristics: patients who were low-income, Black/Latino, older, or underserved populations had portal challenges or decreased use.18,44,58,65,66,70,72,75,79,85,86,93 New Zealand’s plans for rapid portal implementation provided the only example of Indigenous/Aboriginal populations in considering the relationship between health literacy, portal implementation, and equity.100 Additionally, this viewpoint paper reinforced that health literacy needs to be conceptualized beyond the individual’s skills and knowledge and within the context of a complex health care system.100 Recommendations to support the varying literacy level included screening tools, training, and using existing personal relationships for support (eg, proxy). Health literacy screening tools could be used to identify individuals who may need further portal assistance.43,70,84 An instrument to assess patients’ comprehension of EHR notes has been developed through online crowd-sourcing that involved the examination of de-identified clinical notes across 6 illnesses.82 Training tailored for both patients and proxies/caregivers70,83 should enhance skills related to the internet,42,49 computer use,59,91 health literacy,69,81 portal tasks,83 and health record management.47,81 To be accessible, this training could be offered in home,71 through online modules61 and libraries,49 by peers/volunteers,45,51,87,90 family members/spouses,58 or through the health care system.69 Examples of possible training interventions focused on portal tasks and navigation45,63 and e-training programs for HIV patients90 and older adults.61 Reviewed papers examined 1) proxy portal access for older adults,43,63,68,75,83,86 minority populations,40,66 and people with intellectual disabilities;67 and 2) how this access may enable caregivers to provide assistance during emergencies,40,76 support decision-making,66 and translate health information.66,76 However, privacy legislation and regulation may complicate proxy access for adolescents98 and be prohibitive for family caregivers who want to aid in decisions on behalf of the patient.18 “Informal proxy” through sharing portal passwords is a common practice done due to convenience, lack of awareness, and limited features on proxy portal options.40,66,71,74,76 However, this may result in caregivers gaining broader access to online financial accounts that may share the same log-in information.76 Moreover, not every patient may want shared access due to concerns about lost autonomy,41,68 and caregivers influencing decisions on unwanted procedures68 or inadvertently learning about past diagnoses and treatments.68,75,76 Although adolescents are rarely considered in ehealth equity context, the papers on proxies raised the potential harm that could occur when caregivers gain access to sensitive health information.51,75,77 The inconsistent proxy policy response may introduce unequal access to portals for different adolescent populations.77 These papers on proxies further highlight that portals are not a “one-size-fits-all,” but rather they require built-in adaptations68 to accommodate for patients’ changing health conditions, caregiver/spousal relationships, and desired autonomy.75,94,98 DISCUSSION This scoping review expands on previous reviews that have focused on subsets of ehealth equity concepts.12,27,29,30,32 Key findings in our review include varying levels of interest in portal technology among underserved groups; effective and ineffective ways to present portal information; concerns around proxy access; and training in portal use. In contrast, the socio-economic-political context is rarely figured in the included papers pointing to the gap in developing equitable strategies at the higher level of policy and governance. Although equity was an initial legislative aim of portal implementation, it does not appear that this aim was translated into initial MU incentives, and thus portals have become an example of “intervention-generated inequalities.”103 In spite of legislative recognition of widening health disparities, responsibility for portal use is often placed on patients. How this assumption of individual responsibility is being translated within portal literature is evident through the predominant appearance of the notions of barriers and facilitators. For example, other portal reviews have reported patient barriers for portal use including security,30,104 training,30 literacy skills,26 patient awareness,27,30,104 capacity,104 and desire.104 Facilitators included control over health information,30 provider encouragement,30,104 enhanced communication,30 and caregiver engagement.104 In our review, there was limited examination of barriers at the system level.84 Rather, we found predominant references to patient barriers, namely, awareness, interest, attitudes, communication preferences, priorities, self-efficacy, knowledge, computer access, ownership and skills, health literacy, risk perception, privacy and security concerns, and understanding of content.45,49,66,69–71,91,97,101 Commonly, caregivers were viewed as facilitators in overcoming these barriers. Facilitating factors were discussed less often and included convenience, patients’ desire to learn more, patient-provider communication, and health monitoring.66,71,86 Without wishing to minimize the importance of the aforementioned concerns, we would like to emphasize their individualistic orientation to health equity. Presenting barriers as patient barriers reinforces engrained societal beliefs about groups who are ostensibly “tech-savvy” and capable of using technology versus those who are not. This understanding posits portal implementation challenges as an individual concern, whereas in fact effective strategies should target the systemic barriers that result in unjust outcomes for underserved populations. Additionally, the notion of barriers may unintentionally result in innovative health equitable approaches being viewed as upstream interventions that are too complex and too late for patient portal technology already designed and implemented. Accompanying wide implementation of portals across the United States, the predominant strategies to promote equitable portal use among diverse patient populations were user training and providing proxy access. In the eHEF, these strategies target intermediary determinants of health inequities. Yet, as the eHEF makes clear, to achieve health equitable outcomes involves recognition of the influence of a full spectrum of factors: existing governance structures, policy, societal perceptions, and social position of patients and providers. In other words, we suggest an iterative, ongoing process of foregrounding health equity considerations throughout the lifecycle of portal aims, legislation, implementation, and use. The first step in this direction may be adapting portal design for different populations—particularly those discussed in this paper. For example, the reality of complex medical content of the EHR requires at the very least providing portals in patients’ language. A thread throughout the review was ownership and control of online health records. Participants within underserved/low-literacy populations shared their feelings of fear and anxiety over how organizations may access and misuse their records18,72,78,80 and anger when providers denied patients access to their health records.80 Patients also wanted to have the ability to specify what information they would like displayed,80 set proxy levels of information,68 and track who had accessed their records.19,76,78 However, our review demonstrated that strategies are lacking on how to support this patient-centered shift toward ownership and control of their portal data by patients. Similar to findings in other reviews,27,30,33 we found repeated privacy and security concerns in having medical information online. Concerns were heightened for safety net populations by the potential harm that may come in having outside agencies accessing these records. The continued disparities in portal use for Hispanics/Latinos, caution toward online medical information, and surveillance concerns raised by undocumented immigrants may be pointing to the influence of the broader political context influencing portal use. Marthews and Tucker105 suggest that the concerns of government surveillance are legitimate and have resulted in people changing their health-related online activities. Rather than depicting patients as having inflated perceptions of risk, privacy concerns should be taken seriously. Specifically, we should acknowledge and address the broad systemic failures in online policies that have failed to protect the most marginalized and underserved communities.106 Additionally, as authors of the reviewed papers observed, there will always be the nonadopters of patient portals, and thus the importance of developing strategies that prevent disconnection with health care services and further inequities.41,57,59,74 Proxies were frequently recommended for addressing the lower portal use among older adults and patients with limited computer and ehealth literacy. However, this emphasis on proxies overlooks injustices that may be introduced in providing family members online access to patients’ medical information.107 Portals, and by extension the informal practice of password sharing, may be creating novel opportunities for abuse. Sensitive medical information that was once confidential may be shared with spouses and family,108 and financial records may unknowingly be accessed. On a different note, to advance the idea that proxies are a readily available facilitating factor in portal use assumes people have existing peer or family relationships that can serve this role. This unwarranted assumption exacerbates the inequity between people who have sufficient social supports and those who do not. In our review, only 1 study included social support measures in evaluating portal use;58 this highlights the need for further research in evaluating the availability of proxies and developing strategies for patients with limited social supports. Lastly, this review illuminated gaps in current portal research that may be reinforcing inequities within different populations. There is a noticeable lack of consideration for Indigenous perspectives. Similarly, studies specific to gender/sex were few: 3 focused on postpartum/pregnant women,48,81,93 whereas transgender participants were represented in 1 study,50 and the LGBT community was mentioned in a practice brief.94 Although a few papers acknowledged people with neurocognitive,44 physical,96 and visual disabilities,96 only 1 study67 examined how portal content and navigation may support individuals with disabilities. Limitations Balancing the depth versus scope, this review did not include a gray literature search of policy documents. We did not include terms around specific health conditions known for health inequities. As our review included publications in English only and the majority of papers were based in the United States, novel health equitable strategies developed in other countries may not have been captured. CONCLUSION Our intention for this review was to examine how current research is exploring equitable outcomes for portal implementation and use. Although the Institute of Medicine report20 and MU legislation21 recognized the significance of health equity, we found few examples of health equitable approaches at the level of policy and early implementation steps. Rather, the majority of papers provided recommendations at the intermediary level to support individual patients in navigating a provider-centered technology. As other countries and jurisdictions head into portal implementation, we recommend conceptualizing health equity not solely as a distant aim, but rather operationalizing health equitable approaches early into the portal lifecycle. FUNDING Dr. Petrovskaya’s (OP) work on this review was supported by the Research Establishment Grant, Faculty of Nursing, University of Alberta (grant number not applicable). Ms. Antonio (MA) and Dr. Lau (FL) received no specific grants from any funding agency in the public, commercial, or not-for-profit sectors. CONTRIBUTORS MA and FL developed the intellectual idea for the review. MA and OP developed inclusion and exclusion criteria and screened the papers. MA conducted the analysis, composed draft of the results, and created diagrams and tables. OP contributed to drafting selected paragraphs and contributed overall edits to the paper. OP collaborated with a librarian to finalize the search strategy and procured a Covidence® seat. FL provided ongoing guidance and mentorship throughout the review. All 3 authors contributed to the intellectual development of the protocol, helped to resolve disagreement and reach consensus on data extraction and analysis, and provided final approval of the manuscript. SUPPLEMENTARY MATERIAL Supplementary material is available at Journal of the American Medical Informatics Association online. Footnotes 1 In the eHEF underserved populations is an umbrella term representing the vulnerable, minority, and marginalized populations with limited access to health care and poorer health outcomes.34 Examples include low-income immigrant, refugee, homeless, or incarcerated populations. In the United States, these and other under- or un-insured people are served by safety net clinics and hospitals,35,36 and thus are sometimes referred to as “safety net populations.” ACKNOWLEDGEMENTS We would like to acknowledge the assistance of the following individuals: Linda Slater, health care librarian at the University of Alberta, Canada, who developed and pilot-tested comprehensive search strategies, and Dr. Elizabeth Borycki, professor, and Rebecca Raworth, research librarian, at the School of Health Information Science at the University of Victoria, for their assistance in developing initial search terms and scan of the literature. CONFLICT OF INTEREST STATEMENT None declared. 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Publisher: Oxford University Press
Copyright: © The Author(s) 2019. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com
ISSN: 1067-5027
eISSN: 1527-974X
DOI: 10.1093/jamia/ocz054
Publisher site: See Article on Publisher Site

Abstract

Abstract 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. digital divide, ehealth, health equity, health literacy, patient portals, social determinants of health INTRODUCTION A health equity agenda has been pursued by governments and national and international organizations since the 1980s, notably by the World Health Organization (WHO).1–6,Health equity refers to the absence of avoidable and unfair inequalities in health.2 The WHO Commission on the Social Determinants of Health7,8 identifies the complex factors (eg, political context, socio-economic status, education, gender, race, and ethnicity) that can result in health disparities and the unequal provision of care and patient outcomes. With the advancement of health information and communication technologies (ie, ehealth),9 many commentators recognized the relevance of equity concerns to health outcomes experienced by ehealth consumers.10–16 For example, populations with a high burden of health disparities, who could potentially reap the greatest benefit from ehealth strategies, are in fact at further risk of being disadvantaged when policies and implementation of patient portals are not underpinned by explicit attention to health equity.17–19 In the United States, the Institute of Medicine report “Crossing the Quality Chasm”20 and the legislation encouraging “meaningful use” of electronic health records (EHRs)21 aimed to target health inequities/disparities as a foundational goal. This Meaningful Use (MU) legislation involved incentives for providers to offer patients timely access to their online health record and the ability to download their health information.21,22 EHRs contain patient information such as medical history, diagnoses, treatments, medications, immunizations, progress notes, clinical visit summaries, and laboratory results that can be shared with other authorized health care providers.23 The patient portal, or tethered personal health record, provides patients with secure online access to sections contained within the provider’s EHR and additionally may enable communicating with providers via online messaging and requesting prescription refills.24 Over the last decade, research literature addressing the effects of patient portals on patients, health care providers, and health service provision has been rapidly growing.25–31 Across multiple reviews, enhanced communication offered through patient portals was a frequent finding;26,28,30,31 whereas evidence was mixed as to whether portals improved patient health outcomes,25,27–29,31 and insufficient that portals support patient empowerment25 and reduce cost and health care utilization.27,31 A subset within this body of literature references health equity concepts in relation to demographic factors,27,29,30 health literacy,27,32 and the digital divide.12 A systematic review33 on the effectiveness of mobile health devices/applications among marginalized and low-income American groups contributed important insight into technology design features that increase the likelihood of positive health impacts among these groups. This recent review included studies only up to March 2016 and did not focus on patient portals. In the context of ehealth, despite the attention to health equity from policy-makers and selected researchers, there is lack of an overall understanding of how existing literature on patient portals has addressed health equity. Unless health equity considerations are embedded within all stages of the ehealth lifecycle, from design to end-user experiences, it will be challenging to bring to life an ideal vision of equitable ehealth. This scoping review examined how research on patient portals addresses health equity. Our questions were: What health equity concepts are addressed in patient portal research, both explicitly and implicitly? What are the gaps? Is the potential for ehealth-related health inequities explicitly acknowledged in the studies on patient portals? What novel approaches and interventions to reduce health inequities are evaluated in patient portal research? MATERIALS AND METHODS Theoretical Framework We applied the eHealth Equity Framework (eHEF) (see Figure 1), developed during the early stages of the scoping review. The eHEF builds upon the WHO CSDH framework7,8 and brings together the concepts of health equity, social determinants of health inequities, and ehealth. The eHEF incorporates technology throughout the framework to emphasize how 1) the socio-technical-economic-political contexts influence ehealth use and health outcomes; 2) a disadvantaged social position may be reinforced when underserved1 populations are not involved in ehealth implementation; and 3) the social determinants of inequities in health influence overall ehealth use. The eHEF categories and definitions are summarized in Supplementary File 1, and a full description of this framework is provided in an earlier publication.37 We used the eHEF concepts to devise a comprehensive list of search terms and analytical categories in structuring the “Results” section. Figure 1. View largeDownload slide eHealth Equity Framework (eHEF), adapted from Solar and Irwin’s8,9 Conceptual Framework for Action on the Social Determinants of Health. Figure 1. View largeDownload slide eHealth Equity Framework (eHEF), adapted from Solar and Irwin’s8,9 Conceptual Framework for Action on the Social Determinants of Health. Methodology Search Strategy Our review was informed by the Joanna Briggs Institute methodology on scoping reviews38 and PRISMA Extension for Scoping Reviews.39 Early in the process, we developed a protocol, which has been subsequently revised to reflect the iterative review process and registered with the Open Science Framework (https://osf.io/2sgbx/). Based on search strategies recommended by the librarian, in April 2018 we conducted a literature search in CINAHL, MEDLINE, Embase, and Scopus. Publications were not limited to dates and needed to be available in English. Gray literature was included if it was an implementation or practice brief. Conference proceedings, book chapters, and systematic reviews were excluded. The references within the systematic reviews were scanned to identify any additional papers. Our search focused on “patient portal” combined with health equity terms. This list was based on the eHEF concepts and recommendations in the PRISMA-Equity 2012 Extension.14 (See Supplementary File 2 and 3 for detailed search strategy and inclusion/exclusion criteria) Covidence® software was used to eliminate duplicates and to import and track citations. Authors MA and OP independently applied inclusion/exclusion criteria to screen 617 titles and abstracts and reviewed the full texts of the resulting 218 papers, and conflicts were resolved by consensus or by the third author (FL). Through this process we identified 127 papers as meeting inclusion criteria, and 2 additional articles were included from our manual search of systematic reviews. The updated search in early 2019 limited results to records added to the 4 databases between April 1 and December 31, 2018. After eliminating duplicates, 611 records were screened in Covidence®, and 33 papers met inclusion criteria and were added to our analysis. Thus, we had 162 papers in the final count (see Figure 2 for PRISMA flowchart). Figure 2. View largeDownload slide PRISMA flowchart. Figure 2. View largeDownload slide PRISMA flowchart. Closer examination of included articles produced 2 conceptually distinctive sets of material for analysis: 1) publications focused on phenomena identified in the eHEF as health equity concepts (eg, health literacy, digital divide) not limited to demographic factors and/or testing interventions to reduce inequities among portal users (n = 65); and 2) publications reporting the differences in portal use related to patient demographic factors as the only eHEF concept (n = 97). These 2 distinct data sources required different extraction tables and analytical strategies. Data were extracted and coded by the first author (MA) according to the eHEF categories37 and cross-checked by another reviewer. Considering the divergent nature and the volume of 2 data sets, in this article we report our analysis of publications from the first group. Findings on the relationship between patient demographics and portal use (ie, the second group of articles) will be reported in a separate article. RESULTS We included 65 papers in the review. Of the 56 papers that were focused on reporting research findings, 24 were quantitative,40–63 17 were qualitative,64–80 and 15 were mixed or multi-method.18,19,81–93 The remaining 9 papers were gray literature94–102 (see Figure 3 and Supplementary File 4). We also categorized papers by patient populations or demographic characteristics that were referenced within the title or abstract: a single paper examined nonenrolled patient portal population;53 8 papers focused on general patient populations;19,40,41,56,57,82,84,100,101 and 16 papers referenced safety net, vulnerable, and immigrant populations (ie, those referred to as “underserved” in the eHEF).18,45–47,49,59,63,64,66,70,72,75,81,85,87,96 Patient demographic characteristics included rural,74 low education,60,75 low-income/socioeconomic status,18,54,58–60,73,76,85,93 non-White,60 Blacks/African Americans,51,65,69 Hispanics/Latinos/Mexican Americans,42,48,59,65,69,81 adolescents,51,77,98 older adults,41,52,58,61,62,68,76,79,83,88,92,102 caregivers,40,66,68,70,79 post-partum/pregnant women,48,81,93 and LGBT.94 Health and disability conditions that were integral to the study design included respiratory illness,65,80,99 chronic disease/co-morbidities,58,71 diabetes,70,86,87,89,97 HIV/AIDS,44,45,50,55,78,90,91,95 hepatitis C,90 and intellectual disabilities.67 The majority of papers (34/65) were published in the last 2 years (see Figure 4). Figure 3. View largeDownload slide Summary of methods and demographics. Figure A represents all papers within review. Figures B-D display subsets of papers where the study aim included a focus on a specific population group, participant characteristic, or health condition or disability. Figure 3. View largeDownload slide Summary of methods and demographics. Figure A represents all papers within review. Figures B-D display subsets of papers where the study aim included a focus on a specific population group, participant characteristic, or health condition or disability. Figure 4. View largeDownload slide Journal articles addressing health equity in relation to patient portals, 2005–2018. Figure 4. View largeDownload slide Journal articles addressing health equity in relation to patient portals, 2005–2018. Our overall findings are: ehealth policies, governance structures, and cultural and societal values may introduce unequal portal awareness and access; social positions of health care providers and patients introduce differential preferences in portal use; equitable portal implementation can be supported through diverse user-centered design; and intermediary strategies are typically employed to encourage portal use across populations. Based on the eHEF categories, these findings are further detailed later and within Figure 5 and Table 1. Figure 5. View largeDownload slide Treemap of the Scope of the Literature (n = 65). The capitalized text represents eHEF categories. The lower case text represents the key topics found from analysis and application of the eHEF. The size of the box for each topic indicates the proportion of papers. Figure 5. View largeDownload slide Treemap of the Scope of the Literature (n = 65). The capitalized text represents eHEF categories. The lower case text represents the key topics found from analysis and application of the eHEF. The size of the box for each topic indicates the proportion of papers. Table 1. Scope of equitable approaches within patient portal research. The papers on patient portals listed below were selected to demonstrate how ehealth equity is conceptualized across policy, clinical practice, ehealth implementation, and ehealth use Ref# Country eHEF Focus Study type Main outcome 84 United States Governance Mixed methods - surveys interviews and focus groups, (n=84) An explanatory conceptual and explanatory process model from stakeholders’ perspectives on patient portals in an acute setting. The 10 barriers and 7 facilitators are based on perspectives from policy-makers, clinicians, and researchers with a recommendation for a cultural, paradigmatic shift in addressing health equity. 18 United States Policy Rapid ethnography- interviews (n=12), focus groups (n=35) & observations & a survey (n=45) The MU target was achieved, but the tension noted between meeting the MU certification and engaging with patients. Patient portals introduced unique concerns and/or risks for patients who had limited English, or who were undocumented immigrants or homeless. 46 United States Policy Retrospective cohort (n=129, 738) Change from opt-in to universal enrollment policy resulted in Black patients being just as likely to use portals as other racial groups. After the policy change, patients who were either publicly insured or uninsured remained less likely to use patient portals. 77 United States Policy Semi-structured interviews (n=25) Details proxy strategies for adolescents. Proxy policy decision was not determined by federal and state law, but instead by the technological capabilities, available resources, and different population needs. Additionally, authors found a tension between balancing adolescents’ autonomy and privacy and supporting shared–decision-making with family members. 73 United States Cultural Values and Perceptions In- depth interviews (n=20) Health care providers working with a low-income adult population expressed concerns with portals rather than benefits. Concerns included added anxiety and confusion for patients, increased practitioner workload, and portals’ potential for widening disparities. Providers commented on how patients lacked the technology skills to use portals—a belief that was compounded by patients reporting portals not being user-friendly and difficult to use. 72 United Kingdom Patients’ Social Position Surveys and focus groups (n=103) Concerns across multiple underserved patient populations included dispassionate presentation on information, furthering prejudices toward mental health, and the risk of unauthorized access by third party agencies. Patient advocates for patients with limited English commented on patients’ preference for written communication rather than oral. Patients who had trustful relationship with providers had positive attitudes towards portals. 42 United States Patients’ Social Position Cross-sectional survey (n=201) Participants (majority were Mexican-American) thought it was a good idea to view their medical information (93.5%). However, only half of participants (49.2%) believed it was a good idea to view these records online. Authors attributed this to lack of awareness and internet use rather than attitudinal barriers. 79 United States ehealth Implementation Qualitative descriptive study (n=40) Clinical summaries provided to older adults were found useful for sharing with family members and other health care providers. Majority of participants (76%) stated they would not go online to access clinical summaries, and preference was for a paper version. Based on participants’ feedback, 15 recommendations are offered to improve meaningful use of clinical summaries. 92 United States ehealth Implementation Multi-method (n=24) Preliminary findings in the development of video and audio layouts found older adults preferred a natural voice (over synthetic), although there was little difference in remembering and responding to the risk described within the delivered messages. 61 United States Intermediary Determinants Two-armed randomized controlled trial (n=272) The 3-week theory-based e-training program for older adults focused on patient portal knowledge, health decision-making, self-efficacy, health communication, and health literacy; it also included learning modules, discussion boards, and a virtual library. After 3 weeks, with the exception of portal use, the intervention group showed significant improvement. After 4 months, there was a decrease in intervention effects; however, there was significant improvement in self-efficacy and more frequent portal use for the intervention group. 45 United States Intermediary Determinants Cross-sectional study (n=338) The predominant engagement barrier among people with HIV/AIDS was baseline computer skills rather than the hypothesized mental health or substance use condition. For beginner computer users, the training program was not sufficient to enable them to use the portal. Ref# Country eHEF Focus Study type Main outcome 84 United States Governance Mixed methods - surveys interviews and focus groups, (n=84) An explanatory conceptual and explanatory process model from stakeholders’ perspectives on patient portals in an acute setting. The 10 barriers and 7 facilitators are based on perspectives from policy-makers, clinicians, and researchers with a recommendation for a cultural, paradigmatic shift in addressing health equity. 18 United States Policy Rapid ethnography- interviews (n=12), focus groups (n=35) & observations & a survey (n=45) The MU target was achieved, but the tension noted between meeting the MU certification and engaging with patients. Patient portals introduced unique concerns and/or risks for patients who had limited English, or who were undocumented immigrants or homeless. 46 United States Policy Retrospective cohort (n=129, 738) Change from opt-in to universal enrollment policy resulted in Black patients being just as likely to use portals as other racial groups. After the policy change, patients who were either publicly insured or uninsured remained less likely to use patient portals. 77 United States Policy Semi-structured interviews (n=25) Details proxy strategies for adolescents. Proxy policy decision was not determined by federal and state law, but instead by the technological capabilities, available resources, and different population needs. Additionally, authors found a tension between balancing adolescents’ autonomy and privacy and supporting shared–decision-making with family members. 73 United States Cultural Values and Perceptions In- depth interviews (n=20) Health care providers working with a low-income adult population expressed concerns with portals rather than benefits. Concerns included added anxiety and confusion for patients, increased practitioner workload, and portals’ potential for widening disparities. Providers commented on how patients lacked the technology skills to use portals—a belief that was compounded by patients reporting portals not being user-friendly and difficult to use. 72 United Kingdom Patients’ Social Position Surveys and focus groups (n=103) Concerns across multiple underserved patient populations included dispassionate presentation on information, furthering prejudices toward mental health, and the risk of unauthorized access by third party agencies. Patient advocates for patients with limited English commented on patients’ preference for written communication rather than oral. Patients who had trustful relationship with providers had positive attitudes towards portals. 42 United States Patients’ Social Position Cross-sectional survey (n=201) Participants (majority were Mexican-American) thought it was a good idea to view their medical information (93.5%). However, only half of participants (49.2%) believed it was a good idea to view these records online. Authors attributed this to lack of awareness and internet use rather than attitudinal barriers. 79 United States ehealth Implementation Qualitative descriptive study (n=40) Clinical summaries provided to older adults were found useful for sharing with family members and other health care providers. Majority of participants (76%) stated they would not go online to access clinical summaries, and preference was for a paper version. Based on participants’ feedback, 15 recommendations are offered to improve meaningful use of clinical summaries. 92 United States ehealth Implementation Multi-method (n=24) Preliminary findings in the development of video and audio layouts found older adults preferred a natural voice (over synthetic), although there was little difference in remembering and responding to the risk described within the delivered messages. 61 United States Intermediary Determinants Two-armed randomized controlled trial (n=272) The 3-week theory-based e-training program for older adults focused on patient portal knowledge, health decision-making, self-efficacy, health communication, and health literacy; it also included learning modules, discussion boards, and a virtual library. After 3 weeks, with the exception of portal use, the intervention group showed significant improvement. After 4 months, there was a decrease in intervention effects; however, there was significant improvement in self-efficacy and more frequent portal use for the intervention group. 45 United States Intermediary Determinants Cross-sectional study (n=338) The predominant engagement barrier among people with HIV/AIDS was baseline computer skills rather than the hypothesized mental health or substance use condition. For beginner computer users, the training program was not sufficient to enable them to use the portal. View Large Table 1. Scope of equitable approaches within patient portal research. The papers on patient portals listed below were selected to demonstrate how ehealth equity is conceptualized across policy, clinical practice, ehealth implementation, and ehealth use Ref# Country eHEF Focus Study type Main outcome 84 United States Governance Mixed methods - surveys interviews and focus groups, (n=84) An explanatory conceptual and explanatory process model from stakeholders’ perspectives on patient portals in an acute setting. The 10 barriers and 7 facilitators are based on perspectives from policy-makers, clinicians, and researchers with a recommendation for a cultural, paradigmatic shift in addressing health equity. 18 United States Policy Rapid ethnography- interviews (n=12), focus groups (n=35) & observations & a survey (n=45) The MU target was achieved, but the tension noted between meeting the MU certification and engaging with patients. Patient portals introduced unique concerns and/or risks for patients who had limited English, or who were undocumented immigrants or homeless. 46 United States Policy Retrospective cohort (n=129, 738) Change from opt-in to universal enrollment policy resulted in Black patients being just as likely to use portals as other racial groups. After the policy change, patients who were either publicly insured or uninsured remained less likely to use patient portals. 77 United States Policy Semi-structured interviews (n=25) Details proxy strategies for adolescents. Proxy policy decision was not determined by federal and state law, but instead by the technological capabilities, available resources, and different population needs. Additionally, authors found a tension between balancing adolescents’ autonomy and privacy and supporting shared–decision-making with family members. 73 United States Cultural Values and Perceptions In- depth interviews (n=20) Health care providers working with a low-income adult population expressed concerns with portals rather than benefits. Concerns included added anxiety and confusion for patients, increased practitioner workload, and portals’ potential for widening disparities. Providers commented on how patients lacked the technology skills to use portals—a belief that was compounded by patients reporting portals not being user-friendly and difficult to use. 72 United Kingdom Patients’ Social Position Surveys and focus groups (n=103) Concerns across multiple underserved patient populations included dispassionate presentation on information, furthering prejudices toward mental health, and the risk of unauthorized access by third party agencies. Patient advocates for patients with limited English commented on patients’ preference for written communication rather than oral. Patients who had trustful relationship with providers had positive attitudes towards portals. 42 United States Patients’ Social Position Cross-sectional survey (n=201) Participants (majority were Mexican-American) thought it was a good idea to view their medical information (93.5%). However, only half of participants (49.2%) believed it was a good idea to view these records online. Authors attributed this to lack of awareness and internet use rather than attitudinal barriers. 79 United States ehealth Implementation Qualitative descriptive study (n=40) Clinical summaries provided to older adults were found useful for sharing with family members and other health care providers. Majority of participants (76%) stated they would not go online to access clinical summaries, and preference was for a paper version. Based on participants’ feedback, 15 recommendations are offered to improve meaningful use of clinical summaries. 92 United States ehealth Implementation Multi-method (n=24) Preliminary findings in the development of video and audio layouts found older adults preferred a natural voice (over synthetic), although there was little difference in remembering and responding to the risk described within the delivered messages. 61 United States Intermediary Determinants Two-armed randomized controlled trial (n=272) The 3-week theory-based e-training program for older adults focused on patient portal knowledge, health decision-making, self-efficacy, health communication, and health literacy; it also included learning modules, discussion boards, and a virtual library. After 3 weeks, with the exception of portal use, the intervention group showed significant improvement. After 4 months, there was a decrease in intervention effects; however, there was significant improvement in self-efficacy and more frequent portal use for the intervention group. 45 United States Intermediary Determinants Cross-sectional study (n=338) The predominant engagement barrier among people with HIV/AIDS was baseline computer skills rather than the hypothesized mental health or substance use condition. For beginner computer users, the training program was not sufficient to enable them to use the portal. Ref# Country eHEF Focus Study type Main outcome 84 United States Governance Mixed methods - surveys interviews and focus groups, (n=84) An explanatory conceptual and explanatory process model from stakeholders’ perspectives on patient portals in an acute setting. The 10 barriers and 7 facilitators are based on perspectives from policy-makers, clinicians, and researchers with a recommendation for a cultural, paradigmatic shift in addressing health equity. 18 United States Policy Rapid ethnography- interviews (n=12), focus groups (n=35) & observations & a survey (n=45) The MU target was achieved, but the tension noted between meeting the MU certification and engaging with patients. Patient portals introduced unique concerns and/or risks for patients who had limited English, or who were undocumented immigrants or homeless. 46 United States Policy Retrospective cohort (n=129, 738) Change from opt-in to universal enrollment policy resulted in Black patients being just as likely to use portals as other racial groups. After the policy change, patients who were either publicly insured or uninsured remained less likely to use patient portals. 77 United States Policy Semi-structured interviews (n=25) Details proxy strategies for adolescents. Proxy policy decision was not determined by federal and state law, but instead by the technological capabilities, available resources, and different population needs. Additionally, authors found a tension between balancing adolescents’ autonomy and privacy and supporting shared–decision-making with family members. 73 United States Cultural Values and Perceptions In- depth interviews (n=20) Health care providers working with a low-income adult population expressed concerns with portals rather than benefits. Concerns included added anxiety and confusion for patients, increased practitioner workload, and portals’ potential for widening disparities. Providers commented on how patients lacked the technology skills to use portals—a belief that was compounded by patients reporting portals not being user-friendly and difficult to use. 72 United Kingdom Patients’ Social Position Surveys and focus groups (n=103) Concerns across multiple underserved patient populations included dispassionate presentation on information, furthering prejudices toward mental health, and the risk of unauthorized access by third party agencies. Patient advocates for patients with limited English commented on patients’ preference for written communication rather than oral. Patients who had trustful relationship with providers had positive attitudes towards portals. 42 United States Patients’ Social Position Cross-sectional survey (n=201) Participants (majority were Mexican-American) thought it was a good idea to view their medical information (93.5%). However, only half of participants (49.2%) believed it was a good idea to view these records online. Authors attributed this to lack of awareness and internet use rather than attitudinal barriers. 79 United States ehealth Implementation Qualitative descriptive study (n=40) Clinical summaries provided to older adults were found useful for sharing with family members and other health care providers. Majority of participants (76%) stated they would not go online to access clinical summaries, and preference was for a paper version. Based on participants’ feedback, 15 recommendations are offered to improve meaningful use of clinical summaries. 92 United States ehealth Implementation Multi-method (n=24) Preliminary findings in the development of video and audio layouts found older adults preferred a natural voice (over synthetic), although there was little difference in remembering and responding to the risk described within the delivered messages. 61 United States Intermediary Determinants Two-armed randomized controlled trial (n=272) The 3-week theory-based e-training program for older adults focused on patient portal knowledge, health decision-making, self-efficacy, health communication, and health literacy; it also included learning modules, discussion boards, and a virtual library. After 3 weeks, with the exception of portal use, the intervention group showed significant improvement. After 4 months, there was a decrease in intervention effects; however, there was significant improvement in self-efficacy and more frequent portal use for the intervention group. 45 United States Intermediary Determinants Cross-sectional study (n=338) The predominant engagement barrier among people with HIV/AIDS was baseline computer skills rather than the hypothesized mental health or substance use condition. For beginner computer users, the training program was not sufficient to enable them to use the portal. View Large Policy and governance The disconnect between policy-makers and health care providers,19 and interpretation and implementation on standards and strategies19,96 specific to patient portals may be furthering inequities. Although some providers saw the potential of portals in enhancing communication and information-sharing,73 other providers identified barriers including limited time,59,64 funding,64 reimbursement,59 and portal knowledge and familiarity.99 MU legislation unwittingly discouraged providers from promoting portals once they reached the 5% target;18 little focus was given to safety net populations impacted by the digital divide,18 and people with limited English,18,96 low-literacy levels,18,96 or living with a disability.96 In spite of existing legislation that supports patients’ timely access to their records, patients within underserved/low-literacy populations reported being refused access to their records.80,81 However, web standards and disability/discrimination legislation outside of the formal health care system could be used to advocate for change.96 Additionally, to represent the preferences of older adults and their families, 15 recommendations for meaningful use of clinical summaries have been proposed.79 Patients’ limited portal awareness was given as a reason for lack of enrollment.42,48,72,97 Recommendations to increase awareness included going beyond emailing out portal links83 and placing brochures in hospital lobbies;90 but rather to have on-site assistance,49,51 providers encourage portal use,49,80,93,97 and to offer demonstrations during unique opportunities (eg, in hospital and to postpartum Latino mothers after giving birth).48 Additionally, the promotion of patient portals has to match patients’ reading level,67 preferred device,69 and emphasize the features that are of greatest interest.53 The influence of policies on portal awareness and subsequent use was demonstrated in a retrospective cohort study (n = 129 738) across a general patient population.46 The initial opt-in policy resulted in decreased odds of patients being offered a portal access code during a clinic visit if they were older, male, Black, or Spanish-speaking, resulting in low rates of repeat portal use for these groups. After 4 years, when the policy switched to universal access, the differences in repeat portal use between Whites and Blacks disappeared.46 Societal and cultural values Health care providers’ prejudgments may further exclude populations that are already underserved or experience stigmatization and discrimination. Rather than a geographic “digital divide,” an age divide may be perpetuated within health care settings; administrators’ and clinicians’ perceptions that older, low-income adults were not tech-savvy contributed to portals not being embraced within the health care organization.73 Similarly, providers working with a socioeconomically disadvantaged population did not view portals as empowering, but rather saw these technologies as creating additional workload and problems.54 A more recent study with an underserved population found that patients may have high internet use, but may need encouragement from providers to see the value in tracking personal health information through patient portals.47 A practice brief on portal considerations for the LGBT community suggested that inadequate portal designs may reinforce prejudgments: the lack of portal fields that represent a person’s preferred gender could potentially result in insensitive care and discourage patients to return for follow-up clinic visits.94 Patients may also be concerned about how proxies76 and providers72 will respond to online health records that include diagnoses of stigmatized conditions. Yet, HIV patients reported that portal benefits outweighed the historical negative perceptions towards the illness, with appreciation for being able to share medical notes with other providers and friends.55 In a study focused on mental health and substance use within the HIV population, portals were suggested as a nonjudgmental place for people to address their substance use.50 Patients’ social position For this eHEF category, our analysis revealed concerns related to health care relationships, communication and quality of care, online medical notes, and privacy and security. The reviewed papers displayed a range of perspectives on how health care interactions and care supports may change with the introduction of patient portals. Some patients expressed interest in how the information within portals would enhance health care provider relationships,59,63,66,74,78 facilitate communication,49,71,75,80,88,91 support being taken more seriously during visits,80 equalize knowledge differentials,80 manage health,54,85, and address caregiver burden.66 However, other patients described undesirable changes to current services71 and provider relationships69,72,78 and stated preference for in person interactions.18,41,57,69,78,88 In person visits were important as a coping strategy in ensuring high quality care69 and provided social connections for homeless individuals.18 Some older adults said they did not want to feel pushed into using portals,79,83 and that they intended to use portals only when required.83 They reported satisfaction with existing clinic visits79 and viewed going online to check their medical records as an act of betrayal to their doctor.79 In contrast, another study found a strong interest in portal use among older adults to communicate; however, they were dissatisfied in providers’ limited responses to portal messages.62 In rural settings, portals were valued for reducing both disconnection with providers and discontinuity of care from high practitioner turnover.74 Access to online medical notes was a common portal feature examined.55,60,78,79,87 Multivariate analysis on a survey examining the importance of OpenNotes® (n = 6913) found that non-White, less-educated patients were significantly more likely to report that online medical notes were extremely helpful in engaging in care.60 Some HIV patients appreciated the candor of their providers’ notes, and did not find they impacted the relationship with their doctor,55 whereas others suggested that reading their health records online would be too shocking and make their illness too “real.”78 Hesitancy in reading online portal content was also noted in some studies as the information may be overwhelming,79 misinterpreted, alarming,88 or worrisome.80,87 Nonetheless, in order to support strong patient-provider relationships, the desire for transparent, full content medical notes was emphasized across safety net,87 Hispanic,60 and HIV populations.78 Patients had varying preferences for what lifestyle and personal information should be displayed80: some individuals did not want weight,79 past behaviors (eg, smoking),79 and older psychiatric events80 within their online medical notes. Multiple studies referenced patients’ privacy and security concerns in having their health information online;18,36,43,48,52,53,65,66,72,75,78–80,83,87 whereas some individuals perceived the information in their record would be of little interest to hackers66 and were willing to take the risk in accessing portals.52,72,75 However, other individuals reported hacking concerns,43,66,75,78,79 linking their distrust in patient portals to previous security breaches and computer viruses.66,72,80 Compared to Latinos, Black patients had greater concerns over the security of online medical records.69 In contrast, Latino patients near the Mexican-American border acknowledged value in tracking their medical records, but only half thought it was a good idea to have these records online.42 Additionally, older adults,52 advocates for vulnerable populations,72 immigrants,18,72,78 and HIV patients78 worried about how these online records could be used. Providers could use the records to screen out specific patients with complex health conditions.72 Privacy breaches87 and unauthorized portal access from government and insurance agencies52,80 could support surveillance of undocumented immigrants,18,72 and denial of medical claims,78 leading to further stigmatization for HIV patients.95 Specific recommendations to address privacy and security include using the TRUSTe security seal on home pages,69 giving patients ability to correct inaccuracies within portal records,87 and monitor who has accessed their records.19,76,78 Additionally, proxy settings should be adaptable, with different options for level of access and ability for patients to change consent for people who gain access.72 A “sealed envelope” or “break glass” approach can allow proxies to gain access to records after consent or in case of emergency.72,76 Ehealth implementation Usability issues in navigating and completing tasks within portals were found across multiple studies.43,62,75,85 Access and navigation barriers existed for people with physical,71 visual,96 neurocognitive,44 and intellectual disabilities.67 The usability issues experienced by general patient populations were also recognized, as portals have been designed and tethered to provider-centered EHR systems.69,101 To ensure that portals can be understood and optimized for all patient populations,57,62,67,85,96 diverse user-centered design was emphasized.18,85 Yet, our current user-centered strategies may not be reaching the underserved, less autonomous patient populations.70,102 User-centered testing inclusive of underserved populations can be promoted by having a stable point of contact to regularly communicate with participants, providing skills development for both participants and developers, and involving multidisciplinary teams and family caregivers.102 Patient feedback regarding portal content varied. Although there was appreciation for portal features, patients emphasized that the portal costs should be absorbed by the health care system80 in order to achieve fair, equitable use.89 A study with low-income pregnant women found that participants valued the health information provided through friends, families, and general internet sites, rather than what was provided within patient portals.93 Some found portal notes useful, but required more detail;87 whereas others reported personal health information as inaccurate,79,87 outdated,79,87 too long,87 confusing,87 and used too much complex language and medical jargon.62,75,79,81,85,87 Portals often required high numerical literacy.75,85 In an evaluation of content within linked portal sites, numeracy was poorly ranked with recognition that simpler language and explanations were required.56 Laboratory results lacked explanation and context79 and were difficult to interpret85 and understand.80,93 Often, portals were not offered in patients’ preferred language,18,59,66,79 which compounded digital and linguistic challenges.18 To increase the value and patient motivation in using patient portals information could be hyperlinked to educational and instructional material that could virtually extend the clinic visit,79 be more engaging by linking to previous patients’ experiences,93 and offer forums to connect with other people experiencing similar health issues.80,93 Strategies to improve the presentation of numerical and clinical data, included 1) reformatting genetic lab results that were more patient-friendly101 and 2) delivering portal messages through video, visual, audio formats,80,92 or text-to-speech programs.80 Other design recommendations included delivering content in clear, concise language67,80,85 and supporting people with limited English by presenting numerical data in written form rather than verbal.72 Intermediary determinants We found a relationship between portal use, health literacy, and patient characteristics: patients who were low-income, Black/Latino, older, or underserved populations had portal challenges or decreased use.18,44,58,65,66,70,72,75,79,85,86,93 New Zealand’s plans for rapid portal implementation provided the only example of Indigenous/Aboriginal populations in considering the relationship between health literacy, portal implementation, and equity.100 Additionally, this viewpoint paper reinforced that health literacy needs to be conceptualized beyond the individual’s skills and knowledge and within the context of a complex health care system.100 Recommendations to support the varying literacy level included screening tools, training, and using existing personal relationships for support (eg, proxy). Health literacy screening tools could be used to identify individuals who may need further portal assistance.43,70,84 An instrument to assess patients’ comprehension of EHR notes has been developed through online crowd-sourcing that involved the examination of de-identified clinical notes across 6 illnesses.82 Training tailored for both patients and proxies/caregivers70,83 should enhance skills related to the internet,42,49 computer use,59,91 health literacy,69,81 portal tasks,83 and health record management.47,81 To be accessible, this training could be offered in home,71 through online modules61 and libraries,49 by peers/volunteers,45,51,87,90 family members/spouses,58 or through the health care system.69 Examples of possible training interventions focused on portal tasks and navigation45,63 and e-training programs for HIV patients90 and older adults.61 Reviewed papers examined 1) proxy portal access for older adults,43,63,68,75,83,86 minority populations,40,66 and people with intellectual disabilities;67 and 2) how this access may enable caregivers to provide assistance during emergencies,40,76 support decision-making,66 and translate health information.66,76 However, privacy legislation and regulation may complicate proxy access for adolescents98 and be prohibitive for family caregivers who want to aid in decisions on behalf of the patient.18 “Informal proxy” through sharing portal passwords is a common practice done due to convenience, lack of awareness, and limited features on proxy portal options.40,66,71,74,76 However, this may result in caregivers gaining broader access to online financial accounts that may share the same log-in information.76 Moreover, not every patient may want shared access due to concerns about lost autonomy,41,68 and caregivers influencing decisions on unwanted procedures68 or inadvertently learning about past diagnoses and treatments.68,75,76 Although adolescents are rarely considered in ehealth equity context, the papers on proxies raised the potential harm that could occur when caregivers gain access to sensitive health information.51,75,77 The inconsistent proxy policy response may introduce unequal access to portals for different adolescent populations.77 These papers on proxies further highlight that portals are not a “one-size-fits-all,” but rather they require built-in adaptations68 to accommodate for patients’ changing health conditions, caregiver/spousal relationships, and desired autonomy.75,94,98 DISCUSSION This scoping review expands on previous reviews that have focused on subsets of ehealth equity concepts.12,27,29,30,32 Key findings in our review include varying levels of interest in portal technology among underserved groups; effective and ineffective ways to present portal information; concerns around proxy access; and training in portal use. In contrast, the socio-economic-political context is rarely figured in the included papers pointing to the gap in developing equitable strategies at the higher level of policy and governance. Although equity was an initial legislative aim of portal implementation, it does not appear that this aim was translated into initial MU incentives, and thus portals have become an example of “intervention-generated inequalities.”103 In spite of legislative recognition of widening health disparities, responsibility for portal use is often placed on patients. How this assumption of individual responsibility is being translated within portal literature is evident through the predominant appearance of the notions of barriers and facilitators. For example, other portal reviews have reported patient barriers for portal use including security,30,104 training,30 literacy skills,26 patient awareness,27,30,104 capacity,104 and desire.104 Facilitators included control over health information,30 provider encouragement,30,104 enhanced communication,30 and caregiver engagement.104 In our review, there was limited examination of barriers at the system level.84 Rather, we found predominant references to patient barriers, namely, awareness, interest, attitudes, communication preferences, priorities, self-efficacy, knowledge, computer access, ownership and skills, health literacy, risk perception, privacy and security concerns, and understanding of content.45,49,66,69–71,91,97,101 Commonly, caregivers were viewed as facilitators in overcoming these barriers. Facilitating factors were discussed less often and included convenience, patients’ desire to learn more, patient-provider communication, and health monitoring.66,71,86 Without wishing to minimize the importance of the aforementioned concerns, we would like to emphasize their individualistic orientation to health equity. Presenting barriers as patient barriers reinforces engrained societal beliefs about groups who are ostensibly “tech-savvy” and capable of using technology versus those who are not. This understanding posits portal implementation challenges as an individual concern, whereas in fact effective strategies should target the systemic barriers that result in unjust outcomes for underserved populations. Additionally, the notion of barriers may unintentionally result in innovative health equitable approaches being viewed as upstream interventions that are too complex and too late for patient portal technology already designed and implemented. Accompanying wide implementation of portals across the United States, the predominant strategies to promote equitable portal use among diverse patient populations were user training and providing proxy access. In the eHEF, these strategies target intermediary determinants of health inequities. Yet, as the eHEF makes clear, to achieve health equitable outcomes involves recognition of the influence of a full spectrum of factors: existing governance structures, policy, societal perceptions, and social position of patients and providers. In other words, we suggest an iterative, ongoing process of foregrounding health equity considerations throughout the lifecycle of portal aims, legislation, implementation, and use. The first step in this direction may be adapting portal design for different populations—particularly those discussed in this paper. For example, the reality of complex medical content of the EHR requires at the very least providing portals in patients’ language. A thread throughout the review was ownership and control of online health records. Participants within underserved/low-literacy populations shared their feelings of fear and anxiety over how organizations may access and misuse their records18,72,78,80 and anger when providers denied patients access to their health records.80 Patients also wanted to have the ability to specify what information they would like displayed,80 set proxy levels of information,68 and track who had accessed their records.19,76,78 However, our review demonstrated that strategies are lacking on how to support this patient-centered shift toward ownership and control of their portal data by patients. Similar to findings in other reviews,27,30,33 we found repeated privacy and security concerns in having medical information online. Concerns were heightened for safety net populations by the potential harm that may come in having outside agencies accessing these records. The continued disparities in portal use for Hispanics/Latinos, caution toward online medical information, and surveillance concerns raised by undocumented immigrants may be pointing to the influence of the broader political context influencing portal use. Marthews and Tucker105 suggest that the concerns of government surveillance are legitimate and have resulted in people changing their health-related online activities. Rather than depicting patients as having inflated perceptions of risk, privacy concerns should be taken seriously. Specifically, we should acknowledge and address the broad systemic failures in online policies that have failed to protect the most marginalized and underserved communities.106 Additionally, as authors of the reviewed papers observed, there will always be the nonadopters of patient portals, and thus the importance of developing strategies that prevent disconnection with health care services and further inequities.41,57,59,74 Proxies were frequently recommended for addressing the lower portal use among older adults and patients with limited computer and ehealth literacy. However, this emphasis on proxies overlooks injustices that may be introduced in providing family members online access to patients’ medical information.107 Portals, and by extension the informal practice of password sharing, may be creating novel opportunities for abuse. Sensitive medical information that was once confidential may be shared with spouses and family,108 and financial records may unknowingly be accessed. On a different note, to advance the idea that proxies are a readily available facilitating factor in portal use assumes people have existing peer or family relationships that can serve this role. This unwarranted assumption exacerbates the inequity between people who have sufficient social supports and those who do not. In our review, only 1 study included social support measures in evaluating portal use;58 this highlights the need for further research in evaluating the availability of proxies and developing strategies for patients with limited social supports. Lastly, this review illuminated gaps in current portal research that may be reinforcing inequities within different populations. There is a noticeable lack of consideration for Indigenous perspectives. Similarly, studies specific to gender/sex were few: 3 focused on postpartum/pregnant women,48,81,93 whereas transgender participants were represented in 1 study,50 and the LGBT community was mentioned in a practice brief.94 Although a few papers acknowledged people with neurocognitive,44 physical,96 and visual disabilities,96 only 1 study67 examined how portal content and navigation may support individuals with disabilities. Limitations Balancing the depth versus scope, this review did not include a gray literature search of policy documents. We did not include terms around specific health conditions known for health inequities. As our review included publications in English only and the majority of papers were based in the United States, novel health equitable strategies developed in other countries may not have been captured. CONCLUSION Our intention for this review was to examine how current research is exploring equitable outcomes for portal implementation and use. Although the Institute of Medicine report20 and MU legislation21 recognized the significance of health equity, we found few examples of health equitable approaches at the level of policy and early implementation steps. Rather, the majority of papers provided recommendations at the intermediary level to support individual patients in navigating a provider-centered technology. As other countries and jurisdictions head into portal implementation, we recommend conceptualizing health equity not solely as a distant aim, but rather operationalizing health equitable approaches early into the portal lifecycle. FUNDING Dr. Petrovskaya’s (OP) work on this review was supported by the Research Establishment Grant, Faculty of Nursing, University of Alberta (grant number not applicable). Ms. Antonio (MA) and Dr. Lau (FL) received no specific grants from any funding agency in the public, commercial, or not-for-profit sectors. CONTRIBUTORS MA and FL developed the intellectual idea for the review. MA and OP developed inclusion and exclusion criteria and screened the papers. MA conducted the analysis, composed draft of the results, and created diagrams and tables. OP contributed to drafting selected paragraphs and contributed overall edits to the paper. OP collaborated with a librarian to finalize the search strategy and procured a Covidence® seat. FL provided ongoing guidance and mentorship throughout the review. All 3 authors contributed to the intellectual development of the protocol, helped to resolve disagreement and reach consensus on data extraction and analysis, and provided final approval of the manuscript. SUPPLEMENTARY MATERIAL Supplementary material is available at Journal of the American Medical Informatics Association online. Footnotes 1 In the eHEF underserved populations is an umbrella term representing the vulnerable, minority, and marginalized populations with limited access to health care and poorer health outcomes.34 Examples include low-income immigrant, refugee, homeless, or incarcerated populations. In the United States, these and other under- or un-insured people are served by safety net clinics and hospitals,35,36 and thus are sometimes referred to as “safety net populations.” ACKNOWLEDGEMENTS We would like to acknowledge the assistance of the following individuals: Linda Slater, health care librarian at the University of Alberta, Canada, who developed and pilot-tested comprehensive search strategies, and Dr. Elizabeth Borycki, professor, and Rebecca Raworth, research librarian, at the School of Health Information Science at the University of Victoria, for their assistance in developing initial search terms and scan of the literature. CONFLICT OF INTEREST STATEMENT None declared. 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Google Scholar Crossref Search ADS PubMed WorldCat 108 McKinstry B. Consider the vulnerable patient given full access to health records . BMJ 2017 ; 357 : j2674 . Google Scholar Crossref Search ADS PubMed WorldCat © The Author(s) 2019. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model)

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

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

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

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

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