Patient Accessible Electronic Health Records Research Articles

The Effect of Using a Client-Accessible Health Record on Perceived Quality of Care: Interview Study Among Parents and Adolescents.

Patient-accessible electronic health records (PAEHRs) are assumed to enhance the quality of care, expressed in terms of safety, effectiveness, timeliness, person centeredness, efficiency, and equity. However, research on the impact of PAEHRs on the perceived quality of care among parents, children, and adolescents is largely lacking. In the Netherlands, a PAEHR (Iuvenelis) was developed for preventive child health care and youth care. Parents and adolescents had access to its full content, could manage appointments, ask questions, and comment on written reports. This study aims to assess whether and how using this PAEHR contributes to perceived quality of care from a client's perspective. We chose a qualitative design with a phenomenological approach to explore how parents and adolescents perceived the impact of using a PAEHR on quality of care. In-depth interviews that simultaneously included 1 to 3 people were conducted in 2021. In total, 20 participants were included in the study, representing parents and adolescents, both sexes, different educational levels, different native countries, and all participating municipalities. Within this group, 7 of 13 (54%) parents had not previously been informed about the existence of a client portal. Their expectations of using the client portal, in relation to quality of care, were discussed after a demonstration of the portal. Parents and adolescents perceived that using Iuvenelis contributed to the quality of care because they felt better informed and more involved in the care process than before the introduction of Iuvenelis. Moreover, they experienced more control over their health data, faster and simpler access to their health information, and found it easier to manage appointments or ask questions at their convenience. Parents from a migratory background, among whom 6 of 7 (86%) had not previously been informed about the portal, expected that portal access would enhance their understanding of and control over their care processes. The parents expressed concerns about equity because parents from a migratory background might have less access to the service. Nevertheless, portal usability was regarded as high. Furthermore, both parents and adolescents saw room for improvement in the broader interdisciplinary use of Iuvenelis and the quality of reporting. Using Iuvenelis can contribute to the client-experienced quality of care, more specifically to perceived person centeredness, timeliness, safety, efficiency, and integration of care. However, some quality aspects, such as equity, still need addressing. In general, client information about the portal needs to be improved, specifically focusing on people in vulnerable circumstances, such as those from migratory backgrounds. In addition, to maximize the potential benefit of using Iuvenelis, stimulating a person-centered attitude among professionals is important. Considering the small number of adolescent participants (n=7), adding quantitative data from a structured survey could strengthen the available evidence.

Patients' Experiences of Demanded Access to Online Health Records.

Patient-Accessible Electronic Health Records (PAEHR) is particularly controversial in mental healthcare. We aim to explore if there is any association between patients with mental health conditions and the experience of someone demanding access to their PAEHR. A chi-square test showed a significant association between group belonging and experiences of someone demanding access to the PAEHR.

Users' Experiences With Online Access to Electronic Health Records in Mental and Somatic Health Care: Cross-Sectional Study.

Patient-accessible electronic health records (PAEHRs) hold promise for empowering patients, but their impact may vary between mental and somatic health care. Medical professionals and ethicists have expressed concerns about the potential challenges of PAEHRs for patients, especially those receiving mental health care. This study aims to investigate variations in the experiences of online access to electronic health records (EHRs) among persons receiving mental and somatic health care, as well as to understand how these experiences and perceptions vary among those receiving mental health care at different levels of point of care. Using Norwegian data from the NORDeHEALTH 2022 Patient Survey, we conducted a cross-sectional descriptive analysis of service use and perceptions of perceived mistakes, omissions, and offensive comments by mental and somatic health care respondents. Content analysis was used to analyze free-text responses to understand how respondents experienced the most serious errors in their EHR. Among 9505 survey participants, we identified 2008 mental health care respondents and 7086 somatic health care respondents. A higher percentage of mental health care respondents (1385/2008, 68.97%) reported that using PAEHR increased their trust in health care professionals compared with somatic health care respondents (4251/7086, 59.99%). However, a significantly larger proportion (P<.001) of mental health care respondents (976/2008, 48.61%) reported perceiving errors in their EHR compared with somatic health care respondents (1893/7086, 26.71%). Mental health care respondents also reported significantly higher odds (P<.001) of identifying omissions (758/2008, 37.75%) and offensive comments (729/2008, 36.3%) in their EHR compared with the somatic health care group (1867/7086, 26.35% and 826/7086, 11.66%, respectively). Mental health care respondents in hospital inpatient settings were more likely to identify errors (398/588, 67.7%; P<.001) and omissions (251/588, 42.7%; P<.001) than those in outpatient care (errors: 422/837, 50.4% and omissions: 336/837, 40.1%; P<.001) and primary care (errors: 32/100, 32% and omissions: 29/100, 29%; P<.001). Hospital inpatients also reported feeling more offended (344/588, 58.5%; P<.001) by certain content in their EHR compared with respondents in primary (21/100, 21%) and outpatient care (287/837, 34.3%) settings. Our qualitative findings showed that both mental and somatic health care respondents identified the most serious errors in their EHR in terms of medical history, communication, diagnosis, and medication. Most mental and somatic health care respondents showed a positive attitude toward PAEHRs. However, mental health care respondents, especially those with severe and chronic concerns, expressed a more critical attitude toward certain content in their EHR compared with somatic health care respondents. A PAEHR can provide valuable information and foster trust, but it requires careful attention to the use of clinical terminology to ensure accurate, nonjudgmental documentation, especially for persons belonging to health care groups with unique sensitivities.

Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients: Results from a Nationwide Survey in Sweden.

Previous research reports that patients with mental health conditions experience benefits, for example, increased empowerment and validation, from reading their patient-accessible electronic health records (PAEHRs). In mental health care (MHC), PAEHRs remain controversial, as health care professionals are concerned that patients may feel worried or offended by the content of the notes. Moreover, existing research has focused on specific mental health diagnoses, excluding the larger PAEHR userbase with experience in MHC. The objective of this study is to establish if and how the experiences of patients with and those without MHC differ in using their PAEHRs by (1) comparing patient characteristics and differences in using the national patient portal between the 2 groups and (2) establishing group differences in the prevalence of negative experiences, for example, rates of errors, omissions, and offenses between the 2 groups. Our analysis was performed on data from an online patient survey distributed through the Swedish national patient portal as part of our international research project, NORDeHEALTH. The respondents were patient users of the national patient portal 1177, aged 15 years or older, and categorized either as those with MHC experience or with any other health care experience (nonmental health care [non-MHC]). Patient characteristics such as gender, age, education, employment, and health status were gathered. Portal use characteristics included frequency of access, encouragement to read the record, and instances of positive and negative experiences. Negative experiences were further explored through rates of error, omission, and offense. The data were summarized through descriptive statistics. Group differences were analyzed through Pearson chi-square. Of the total sample (N=12,334), MHC respondents (n=3131) experienced errors (1586/3131, 50.65%, and non-MHC 3311/9203, 35.98%), omissions (1089/3131, 34.78%, and non-MHC 2427/9203, 26.37%) and offenses (1183/3131, 37.78%, and non-MHC 1616/9203, 17.56%) in the electronic health record at a higher rate than non-MHC respondents (n=9203). Respondents reported that the identified error (MHC 795/3131, 50.13%, and non-MHC 1366/9203, 41.26%) and omission (MHC 622/3131, 57.12%, and non-MHC 1329/9203, 54.76%) were "very important," but most did nothing to correct them (MHC 792/3131, 41.29%, and non-MHC 1838/9203, 42.17%). Most of the respondents identified as women in both groups. About 1 in 2 MHC patients identified an error in the record, and about 1 in 3 identified an omission, both at a much higher rate than in the non-MHC group. Patients with MHC also felt offended by the content of the notes more commonly (1 in 3 vs 1 in 6). These findings validate some of the worries expressed by health care professionals about providing patients with MHC with PAEHRs and highlight challenges with the documentation quality in the records.

Involving Older Users in Design of Patient Accessible Electronic Health Records: Exploring the Potential of Open‐Ended Questions

ABSTRACTDespite older adults being one of the most important groups of users of eHealth services, including patient accessible electronic health records, these are claimed to not be designed to suit older users, and to not necessarily fulfill their information needs. User‐centered design methods often utilized when developing eHealth services have also been claimed to not work well for older adults. This paper suggests an alternative way of collecting ideas and feedback on eHealth from older adults, by including open‐ended questions in the data collection of larger studies on eHealth information behavior. When data are collected by methods like focus group interviews and surveys, older adults can be requested to envision an eHealth service that suits their needs. Results from studies in Finland are presented, and show that current eHealth services do not fulfill all information needs of older adults, as answers to the question in both focus group interviews and surveys contain practical suggestions for additional and more comprehensible information, easier ways of searching for needed information, and alternative channels for communication. Open‐ended questions can be a cost‐effective and timesaving way to help in the design and development of patient accessible electronic health records and other types of eHealth services.

Changes in Documentation Due to Patient Access to Electronic Health Records: Protocol for a Scoping Review.

Internationally, patient-accessible electronic health records (PAEHRs) are increasingly being implemented. Despite reported benefits to patients, the innovation has prompted concerns among health care professionals (HCPs), including the possibility that access incurs a "dumbing down" of clinical records. Currently, no review has investigated empirical evidence of whether and how documentation changes after introducing PAEHRs. This paper presents the protocol for a scoping review examining potential subjective and objective changes in HCPs documentation after using PAEHRs. This scoping review will be carried out based on the framework of Arksey and O'Malley. Several databases will be used to conduct a literature search (APA PsycInfo, CINAHL, PubMed, and Web of Science Core Collection). Authors will participate in screening identified papers to explore the research questions: How do PAEHRs affect HCPs' documentation practices? and What subjective and objective changes to the clinical notes arise after patient access? Only studies that relate to actual use experiences, and not merely prior expectations about PAEHRs, will be selected in the review. Data abstraction will include but will not be limited to publication type, publication year, country, sample characteristics, setting, study aim, research question, and conclusions. The Mixed Methods Appraisal Tool will be used to assess the quality of the studies included. The results from this scoping review will be presented as a narrative synthesis structured along the key themes of the corpus of evidence. Additional data will be prepared in charts or tabular format. We anticipate the results to be presented in a scoping review at a later date. They will be disseminated at scientific conferences and through publication in a peer-reviewed journal. This is the first scoping review that considers potential change in documentation after implementation of PAEHRs. The results can potentially help affirm or refute prior opinions and expectations among various stakeholders about the use of PAEHRs and thereby help to address uncertainties. Results may help to provide guidance to clinicians in writing notes and thus have immediate practical relevance to care. In addition, the review will help to identify any substantive research gaps in this field of research. In the longer term, our findings may contribute to the development of shared documentation guidelines, which in turn are central to improving patient communication and safety. PRR1-10.2196/46722.

Understanding older adults' intention to use patient-accessible electronic health records: Based on the affordance lens.

Given the aging population and the rapid development of the digital society, concerns about promoting older adults' health skills are increasing. Patient-accessible electronic health records (PAEHRs) are implemented globally for aging health safeguards. The demand for using health-related information communication technologies (ICTs) among older adults and the factors that promote their usage intention of PAEHRs need to be studied. Drawing upon affordance theory, we constructed a research model that integrates four affordance types, aggregation, interactivity, collaboration, and communication, to identify the effects of affordances and attachment to platforms and doctors that contribute to older adults' usage intention on PAEHRs. Online survey data from 498 older adults (above 60 years) were collected and analyzed using partial least square-structural equation modeling. Our findings demonstrated how PAEHR's affordances facilitate older adults' attachment to platforms and doctors. We found that aggregation (γ = 0.417, P < 0.001) and interactivity (γ = 0.397, P < 0.001) can positively influence older adults' attachment to the PAEHR platform, and collaboration (γ = 0.407, P < 0.001) affordance can positively influence older adults' attachment to doctors on the PAEHR platform. Furthermore, seniors' attachment to the platform (γ = 0.598, P < 0.001) and attachment to the doctor (γ = 0.156, P < 0.01) can both positively influence their usage intention, and attachment to the platform had a positive relationship with attachment to doctors (γ = 0.230, P < 0.001) on the PAEHR. This study enriched the understanding of elders' attachment to doctors on PAEHRs and contributed to the literature on health-related ICT usage targets of older adults. Our findings also shed light on inspiring operators of health-related ICTs to formulate appropriate strategies for aging-friendly design to guide older adults to adopt health-related ICTs in their everyday health information practices.

Changes in Documentation Due to Patient Access to Electronic Health Records (PubMed).

Abstract Internationally, patient-accessible electronic health records (PAEHRs) are increasingly being implemented. Despite reported benefits to patients, the innovation has prompted concerns among health care professionals (HCPs), including the possibility that access incurs a "dumbing down" of clinical records. Currently, no review has investigated empirical evidence of whether and how documentation changes after introducing PAEHRs. The objective of this review is to examine potential subjective and objective changes in HCPs documentation after using PAEHRs.

Attitudes and associated factors of patients' adoption of patient accessible electronic health records in China - A mixed methods study.

Although patient accessible electronic health records (PAEHRs) offer great potential in enhancing the provision of patient-centered care and improving satisfaction, the adoption rate is still low. Currently, few studies are there for researchers and health organization leaders to understand patients' thoughts and related factors of PAEHRs adoption in developing countries. China adopted more limited practices of PAEHRs, among which we selected Yuebei People's Hospital as an example. The study aimed to research patient attitudes toward PAEHRs use and the associated factors of patients' adoption of PAEHRs in China, which is achieved by both qualitative and quantitative studies. This study employed sequential mixed-methods. The DeLone & McLean information systems (D&M IS) success model, Unified Theory of Acceptance and Use of Technology (UTAUT) and task-technology fit (TTF) model were used to guide the research. Finally, we collected 28 valid in-depth interview responses, 51 valid semi-structured interview responses and 235 valid questionnaire responses. The research model was tested and validated using data collected. The findings of the qualitative study reveal that patients' rate perceived task productivity and customer satisfaction as benefits, and poor-quality information as flaws. Results of the quantitative study show that the drivers of behavioral intention are performance expectance, effort expectancy and social influence; the predictors of use behavior are TTF and behavioral intention. It is necessary to consider PAEHRs' task-tool role in patients' adoption behavior. Hospitalized patients value PAEHRs' practical attributes and attach much importance to the information content and application design.

Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review.

Ongoing efforts worldwide to provide patients with patient-accessible electronic health records (PAEHRs) have led to variability in adolescent and parental access across providers, regions, and countries. There is no compilation of evidence to guide policy decisions in matters such as access age and the extent of parent proxy access. In this paper, we outline our scoping review of different stakeholders' (including but not limited to end users) views, use, and experiences pertaining to web-based access to electronic health records (EHRs) by children, adolescents, and parents. The aim of this study was to identify, categorize, and summarize knowledge about different stakeholders' (eg, children and adolescents, parents, health care professionals [HCPs], policy makers, and designers of patient portals or PAEHRs) views, use, and experiences of EHR access for children, adolescents, and parents. A scoping review was conducted according to the Arksey and O'Malley framework. A literature search identified eligible papers that focused on EHR access for children, adolescents, and parents that were published between 2007 and 2021. A number of databases were used to search for literature (PubMed, CINAHL, and PsycINFO). The approach resulted in 4817 identified articles and 74 (1.54%) included articles. The papers were predominantly viewpoints based in the United States, and the number of studies on parents was larger than that on adolescents and HCPs combined. First, adolescents and parents without access anticipated low literacy and confidentiality issues; however, adolescents and parents who had accessed their records did not report such concerns. Second, the main issue for HCPs was maintaining adolescent confidentiality. This remained an issue after using PAEHRs for parents, HCPs, and other stakeholders but was not an experienced issue for adolescents. Third, the viewpoints of other stakeholders provided a number of suggestions to mitigate issues. Finally, education is needed for adolescents, parents, and HCPs. There is limited research on pediatric PAEHRs, particularly outside the United States, and on adolescents' experiences with web-based access to their records. These findings could inform the design and implementation of future regulations regarding access to PAEHRs. Further examination is warranted on the experiences of adolescents, parents, and HCPs to improve usability and utility, inform universal principles reducing the current arbitrariness in the child's age for own and parental access to EHRs among providers worldwide, and ensure that portals are equipped to safely and appropriately manage a wide variety of patient circumstances. RR2-10.2196/36158.

The Effects of the Use of Patient-Accessible Electronic Health Record Portals on Cancer Survivors' Health Outcomes: Cross-sectional Survey Study.

In the past decade, patient-accessible electronic health record (PAEHR) systems have emerged as an important tool for health management both at the hospital level and individual level. However, little is known about the effects of PAEHR portals on the survivorship of patients with chronic health conditions (eg, cancer). This study aims to investigate the effects of the use of PAEHR portals on cancer survivors' health outcomes and to examine the mediation pathways through patient-centered communication (PCC) and health self-efficacy. Data for this study were derived from the Health Information National Trends Survey (HINTS 5, Cycle 4) collected from February 2020 to June 2020. This study only involved respondents who reported having been diagnosed with cancer (N=626). Descriptive analyses were performed, and the mediation models were tested using Model 6 from the SPSS macro PROCESS. Statistically significant relationships among PAEHR portal use, PCC, health self-efficacy, and physical and psychological health were examined using bootstrapping procedures. In this study, we referred to the regression coefficients generated by min-max normalization as percentage coefficients (bp). The 95% bootstrapped CIs were used with 10,000 resamplings. No positive direct associations between PAEHR portal use and cancer survivors' health outcomes were found. The results supported the indirect relationship between PAEHR portal use and cancer survivors' psychological health via (1) PCC (bp=0.029; β=.023, 95% CI .009-.054), and (2) PCC and health self-efficacy in sequence (bp=0.006; β=.005, 95% CI .002-.014). Besides, the indirect association between PAEHR portal use and cancer survivors' physical health (bp=0.006; β=.004, 95% CI .002-.018) via sequential mediators of PCC and health self-efficacy was also statistically acknowledged. This study offers empirical evidence about the significant role of PAEHR portals in delivering PCC, improving health self-efficacy, and ultimately contributing to cancer survivors' physical and psychological health.

Usability of the Swedish Accessible Electronic Health Record: Qualitative Survey Study.

BackgroundPatient portals are increasingly being implemented worldwide to ensure that patients have timely access to their health data, including patients’ access to their electronic health records. In Sweden, the e-service Journalen is a national patient-accessible electronic health record (PAEHR), accessible on the web through the national patient portal. User characteristics and perceived benefits of using a PAEHR will influence behavioral intentions to use and adoption; however, poor usability, which increases effort expectancy, may have a negative impact. Therefore, it is of interest to further explore how users of the PAEHR Journalen perceive its usability and usefulness.ObjectiveOn the basis of the analysis of the survey respondents’ experiences of the usability of the Swedish PAEHR, this study aimed to identify specific usability problems that may need to be addressed in the future.MethodsA survey study was conducted to elicit opinions and experiences of patients using Journalen. Data were collected from June to October 2016. The questionnaire included a free-text question regarding the usability of the system, and the responses were analyzed using content analysis with a sociotechnical framework as guidance when grouping identified usability issues.ResultsDuring the survey period, 423,141 users logged into Journalen, of whom 2587 (0.61%) completed the survey (unique users who logged in; response rate 0.61%). Of the 2587 respondents, 186 (7.19%) provided free-text comments on the usability questions. The analysis resulted in 19 categories, which could be grouped under 7 of the 8 dimensions in the sociotechnical framework of Sittig and Singh. The most frequently mentioned problems were related to regional access limitations, structure and navigation of the patient portal, and language and understanding.ConclusionsAlthough the survey respondents, who were also end users of the PAEHR Journalen, were overall satisfied with its usability, they also experienced important challenges when accessing their records. For all patients to be able to reap the benefits of record access, it is essential to understand both the usability challenges they encounter and, more broadly, how policies, regulations, and technical implementation decisions affect the usefulness of record access. The results presented here are specific to the Swedish PAEHR Journalen but also provide important insights into how design and implementation of record access can be improved in any context.

Design of a Patient-Accessible Electronic Health Record System in Mental Health.

Patient accessible Electronic Health Records (PAEHRs) are increasingly implemented internationally. However, studies carried out in the mental health care setting report several practical and ethical challenges when introducing PAEHRs. In this paper we aim to explore the requirements of a PAEHR system in mental health. As part of a participatory design process, we collected qualitative data from service users and staff in a rural mental health day clinic setting, which can be summarized in the following themes: I) Function and way of the documentation; II) Impact on Treatment; III) Concerns about PAEHRs; IV) time of access to PAEHRs; V) Different views on what to share; VI) Access, Data Privacy and Special Features. Our study uncovered the complexity and special requirements and barriers to the design of PAEHR in mental health. While we are in an early stage of our study, we will continue this iterative process and adapt the PAEHR system to the specific needs of the users and domains.

Experiences from using patient accessible electronic health records - a qualitative study within Sámi mental health patients in Norway

ABSTRACT Patient accessible electronic health records (PAEHR) has been implemented in the Norwegian public health care system since 2015. In Norway the indigenous minority is the Sámi people. Studies show that lingual and cultural competence of the health professionals can affect Sámi patients’ user satisfaction with the health care system. A qualitative study was conducted to gather experience of PAEHR in mental health care for Sámi patients. Semi-structured interviews were conducted with five participants, who self-identified as Sámi, had experience as patients in mental health care, and had used the PAEHR service. The material was transcribed and coded and categorised using the framework method. Finally, the data was analysed using theoretic thematic analysis. The participants reported that the service was particularly helpful in identifying misunderstandings caused by different cultural perceptions between the patient and the therapist. Difficulties with Norwegian as written language in the journal were uncovered. The participants were ambiguous on whether cultural characteristics scold be recorded in the journal.

User Evaluation of the Swedish Patient Accessible Electronic Health Record: System Usability Scale.

BackgroundTransparency is increasingly called for in health care, especially, when it comes to patients’ access to their electronic health records. In Sweden, the e-service Journalen is a national patient accessible electronic health record (PAEHR), accessible online via the national patient portal. User characteristics and perceived benefits of using a PAEHR influence behavioral intention for use and adoption, but poor usability that increases the effort expectancy can have a negative impact. It is, therefore, of interest to explore how users of the PAEHR Journalen perceive its usability and usefulness.ObjectiveThe aim of this study was to explore how the users of the Swedish PAEHR experience the usability of the system and to identify differences in these experiences based on the level of transparency of the region.MethodsA survey study was conducted to elicit opinions and experiences of patients using Journalen. The data were collected from June to October 2016. The questionnaire included questions regarding the usability of the system from the System Usability Scale (SUS). The SUS analysis was the focus of this paper. Analysis was performed on different levels: nationally looking at the whole data set and breaking it down by focusing on 2 different regions to explore differences in experienced usability based on the level of transparency.ResultsDuring the survey period, 423,141 users logged into Journalen, of which 2587 unique users completed the survey (response rate 0.61%). The total mean score for all respondents to the SUS items was 79.81 (SD 14.25), which corresponds to a system with good usability. To further explore whether the level of transparency in a region would affect the user’s experience of the usability of the system, we analyzed the 2 regions with the most respondents: Region Uppsala (the first to launch, with a high level of transparency), and Region Skåne (an early implementer, with a low level of transparency at the time of the survey). Of the participants who responded to at least 1 SUS statement, 520 stated that they had received care in Region Skåne, whereas 331 participants had received care in Region Uppsala. Uppsala’s mean SUS score was 80.71 (SD 13.41), compared with Skåne’s mean of 79.37 (SD 13.78).ConclusionsThe Swedish national PAEHR Journalen has a reasonably good usability (mean SUS score 79.81, SD 14.25); however, further research into more specific usability areas are needed to ensure usefulness and ease of use in the future. A somewhat higher SUS score for the region with high transparency compared with the region with low transparency could indicate a relationship between the perceived usability of a PAEHR and the level of transparency offered, but further research on the relationship between transparency and usability is required.

Do you want to receive bad news through your patient accessible electronic health record? A national survey on receiving bad news in an era of digital health.

Despite the fact that patient accessible electronic health records (PAEHRs) have been around for many years in several countries, there is a lack of research investigating patient's preferences for receiving bad news, including through PAEHRs. Little is also known about the characteristics of the patients who prefer to receive bad news through the PAEHR in terms of, for example medical diagnosis, age and educational level. This study, based on a national patient survey in Sweden (N = 2587), investigated this. Results show that, generally, receiving bad news by reading in the PAEHR is still among the least preferred options. Additionally, a higher proportion of men want to receive bad news in the PAEHR compared to women (p = 0.001), and the same goes for those who are not working/have worked in healthcare (p = 0.007). An effect of disease groups was also found, showing that diabetes patients in particular, want to receive bad news through the PAEHR.

Factors Influencing Development and Implementation of Patients' Access to Electronic Health Records-A Comparative Study of Sweden and the Netherlands.

Background: Patient-accessible electronic health records (PAEHRs) and associated national policies have increasingly been set up over the past two decades. Still little is known about the most effective strategy for developing and implementing PAEHRs. There are many stakeholders to take into account, and previous research focuses on the viewpoints of patients and healthcare professionals. Many known barriers and challenges could be solved by involving end-users in the development and implementation process. This study therefore compares barriers and facilitators for PAEHR development and implementation, both general and specific for patient involvement, that were present in Sweden and the Netherlands.Methods: There were a total of 14 semi-structured interviews with 16 key informants from both countries, on which content analysis was performed. The Consolidated Framework for Implementation Research was used to guide both the construction of the interview guides and the content analysis.Outcomes: The main barriers present in both countries are resistance from healthcare professionals and technical barriers regarding electronic health record systems and vendors. Facilitators varied across the two contexts, where the national infrastructure and program management were highlighted as facilitators in Sweden and stakeholder engagement (including patients and healthcare professionals) was described as a facilitator in both contexts. Strong leadership was also described as a critical success factor, especially when faced with healthcare professional resistance.Conclusion: Most of the major barriers and facilitators from both countries are covered in existing literature. This study, however, identified factors that can be seen as more practical and that would not have arisen from interviews with patients or physicians. Recommendations for policymakers include keeping the mentioned barriers in mind from the start of development and paving the way for facilitators, mainly strict policies, learning from peer implementers, and patient involvement, when possible. Implementers should focus on strong decision-making and project management and on preparing the healthcare organization for the PAEHR.

Off the record: The invisibility work of doctors in a patient-accessible electronic health record information service.

In this article, we draw on Michael Lipsky's work on street-level bureaucrats and discretion to analyse a real case setting comprising an interview study of 30 Swedish doctors regarding their experiences of changes in clinical work following patients being given access to medical records information online. We introduce the notion of invisibility work to capture how doctors exercise discretion to preserve the invisibility of their work, in contrast to the well-established notion of invisible work, which denotes work made invisible by parties other than those performing it. We discuss three main forms of invisibility work in relation to records: omitting information, cryptic writing and parallel note writing. We argue that invisibility work is a way for doctors to resolve professional tensions arising from the political decision to provide patients with online access to record information. Although invisibility work is understood by doctors as a solution to government-initiated visibility, we highlight how it can create difficulties for doctors concerning accountability towards patients, peers and authorities.

How the Use of a Patient-Accessible Health Record Contributes to Patient-Centered Care: Scoping Review.

BackgroundWorldwide, patient-centered care is becoming a widely used concept in medical practice, getting more and more attention because of its proven ability to improve quality of care and reduce costs. Although several studies show that patient-accessible electronic health records (PAEHRs) influence certain aspects of patient-centered care, the possible contribution of PAEHR implementation to patient-centered care as a comprehensive concept has not, to our knowledge, been structurally evaluated to date.ObjectiveThe objective of this study is to review whether and how the use of PAEHRs contributes to patient-centered care both in general and among specific population groups.MethodsWe followed PRISMA Extension for Scoping Reviews reporting guidelines. We identified literature in 5 databases, using the terms “patient-accessible medical records,” “patient experiences,” and “professional experiences” as key concepts. A total of 49 articles were included and analyzed with a charting code list containing 10 elements of patient-centered care.ResultsStudies were diverse in design, country of origin, functionalities of the investigated PAEHR, and target population. Participants in all studies were adults. Most studies reported positive influence of PAEHR use on patient-centered care; patient accessible health records were appreciated for their opportunity to empower patients, inform patients about their health, and involve patients in their own care. There were mixed results for the extent to which PAEHRs affected the relation between patients and clinicians. Professionals and patients in mental health care held opposing views concerning the impact of transparency, where professionals appeared more worried about potential negative impact of PAEHRs on the patient-clinician relationship. Their worries seemed to be influenced by a reluctant attitude toward patient-centered care. Disadvantaged groups appeared to have less access to and make less use of patient-accessible records than the average population but experienced more benefits than the average population when they actually used PAEHRs.ConclusionsThe review indicates that PAEHRs bear the potential to positively contribute to patient-centered care. However, concerns from professionals about the impact of transparency on the patient-clinician relationship as well as the importance of a patient-centered attitude need to be addressed. Potentially significant benefits for disadvantaged groups will be achieved only through easily accessible and user-friendly PAEHRs.

Finding the Person in Electronic Health Records. A Mixed-Methods Analysis of Person-Centered Content and Language

ABSTRACT The co-creation and sharing of documentation of person-centered care is important, but challenging in clinical practice. Online access to health records is considered essential to increase patient participation and empowerment in person-centered care provision. The aims of this study were (1) to identify the extent of person-centered content in medical inpatient records and discharge letters; (2) to describe the characteristics of the language and rhetoric used in discharge letters. This was a concurrent, mixed-methods study involving a deductive, quantitative analysis of person-centered content in 69 Patient Accessible Electronic Health Records from patients with pituitary tumors, and an iterative, qualitative language analysis of a nested sample of 57 discharge letters. Both the content and language of inpatient records were mostly patient-centered. Records were concerned with the documentation of symptoms and medical and care interventions. There was little person-centered documentation of patients’ preferences, wishes and needs, and shared decision-making. In the discharge letters, written for the patients, some physicians had attempted to write in a person-centered way, using plain language and a narrative. However, most wrote in a style that was reflective of their discourse community, using abbreviations and medical terms. Established norms for documentation in healthcare are a barrier to person-centered documentation. Patients’ needs and preferences about documentation should be explored to increase understanding of how person-centered documentation can be achieved in clinical practice.