Enhancing Patient Understanding of Laboratory Test Results: Systematic Review of Presentation Formats and Their Impact on Perception, Decision, Action, and Memory.

BACKGROUND: Direct access of patients to their web-based patient portal, including laboratory test results, has become increasingly common. Numeric laboratory results can be challenging to interpret for patients, which may lead to anxiety, confusion, and unnecessary doctor consultations. Laboratory results can be presented in different formats, but there is limited evidence regarding how these presentation formats impact patients' processing of the information. OBJECTIVE: This study aims to synthesize the evidence on effective formats for presenting numeric laboratory test results with a focus on outcomes related to patients' information processing, including affective perception, perceived magnitude, cognitive perception, perception of communication, decision, action, and memory. METHODS: The search was conducted in 3 databases (PubMed, Web of Science, and Embase) from inception until May 31, 2023. We included quantitative, qualitative, and mixed methods articles describing or comparing formats for presenting diagnostic laboratory test results to patients. Two reviewers independently extracted and synthesized the characteristics of the articles and presentation formats used. The quality of the included articles was assessed by 2 independent reviewers using the Mixed Methods Appraisal Tool. RESULTS: A total of 18 studies were included, which were heterogeneous in terms of study design and primary outcomes used. The quality of the articles ranged from poor to excellent. Most studies (n=16, 89%) used mock test results. The most frequently used presentation formats were numerical values with reference ranges (n=12), horizontal line bars with colored blocks (n=12), or a combination of horizontal line bars with numerical values (n=8). All studies examined perception as an outcome, while action and memory were studied in 1 and 3 articles, respectively. In general, participants' satisfaction and usability were the highest when test results were presented using horizontal line bars with colored blocks. Adding reference ranges or personalized information (eg, goal ranges) further increased participants' perception. Additionally, horizontal line bars significantly decreased participants' tendency to search for information or to contact their physician, compared with numerical values with reference ranges. CONCLUSIONS: In this review, we synthesized available evidence on effective presentation formats for laboratory test results. The use of horizontal line bars with reference ranges or personalized goal ranges increased participants' cognitive perception and perception of communication while decreasing participants' tendency to contact their physicians. Action and memory were less frequently studied, so no conclusion could be drawn about a single preferred format regarding these outcomes. Therefore, the use of horizontal line bars with reference ranges or personalized goal ranges is recommended to enhance patients' information processing of laboratory test results. Further research should focus on real-life settings and diverse presentation formats in combination with outcomes related to patients' information processing.

General Practices' Experiences With Patients' Web-Based Access to Medical Records: Survey Study.

BACKGROUND: Patients' web-based access to their medical records is expected to promote their role and responsibility in managing their own health and treatments and supporting shared decision-making. As of July 2020, general practices in the Netherlands are legally obliged to provide their patients access to their electronic medical records. Web-based access provision is facilitated and stimulated through a national support program named OPEN. OBJECTIVE: We aimed to investigate general practice staff experiences with providing web-based access; investigate its impact on patient consultations, administrative actions, and patient inquiries; and investigate how it affects routine general practice workflow processes. METHODS: In October 2021, a total of 3813 general practices in the Netherlands were invited to complete a web-based survey that included questions regarding their experiences with the provision of web-based access to medical records and how it affects routine general practice workflow. Responses of general practices that started providing web-based access before 2020, in 2020, or in 2021 were analyzed to identify trends. RESULTS: Of 3813 invited general practices, 523 (13.72%) completed the survey. Approximately all responding general practices (487/523, 93.1%) indicated that they provide web-based access. Experiences with patients' web-based access were diverse, with 36.9% (178/482) primarily positive, 8.1% (39/482) primarily negative, 42.3% (204/482) neutral, and 12.7% (61/482) could not (yet) indicate how they experienced web-based access. Of the total, two-thirds (311/473, 65.8%) reported an increase in e-consultations and a similar percentage (302/474, 63.7%) indicated an increase in administrative actions associated with web-based access provision. A small proportion of the practices (≤10%) experienced a decrease in patient contacts. Earlier adoption of web-based access was associated with a more positive attitude toward web-based access and more positive experienced effects related to patient contacts and general practice workflow. CONCLUSIONS: The surveyed general practices mainly experienced providing web-based access as either neutral or mostly positive, despite an increased number of patient contacts and administrative burden that were associated with its adoption. Periodic monitoring of experiences is needed to understand the temporal or structural nature of both the intended and unintended effects of patients' web-based access to medical records for general practices and their staff.

The Effects of Online Access to General Practice Medical Records Perceived by Patients: Longitudinal Survey Study.

BACKGROUND: Patient online access to medical records is assumed to facilitate patient empowerment and advance patient-centered health care. However, to date, the actual effects of online access to medical records perceived by patients and other outcomes are insufficiently empirically tested. OBJECTIVE: This study aimed to investigate the effects of online access to medical records on patient empowerment, informed decision-making, and the patient-provider relationship perceived by patients. METHODS: A nationwide, 2-wave, longitudinal survey study was conducted among Dutch adults (N=2402). Linear regression analyses were performed. In model 1, the perceived effects of online access to medical records (measured at T1 [first measurement; July 2021]) on 16 outcomes (measured at T2 [second measurement; January 2022]), which were associated with the use of online access to general practice medical records in previous research, were investigated. Model 2 included sociodemographic factors and patient characteristics as confounders. RESULTS: Users indicated more strongly than nonusers that online access to medical records would increase their participation in health care, improve the relationship with their general practitioner, and support informed decision-making. These results were robust when adjusted for the influence of confounders. Effect sizes were very small, with unstandardized regression coefficients (B) ranging between -0.39 and 0.28. Higher digital and health literacy were associated with higher ratings of almost all effects. CONCLUSIONS: Online access to medical records has the potential to empower patients and foster informed decision-making among patients. The effects in this study were small but might grow over time. Other factors, such as the attitude of general practitioners toward online access to medical records, might moderate these effects. The results indicate that the potential benefits of online access to medical records might be unevenly distributed. We suggest future exploration of the conditions under which online access to medical records can improve health care system functioning and efficiency without increasing health inequality.

Patient and Health Care Provider Perspectives on Patient Access to Test Results via Web Portals: Scoping Review.

BACKGROUND: A frequently used feature of electronic patient portals is the viewing of test results. Research on patient portals is abundant and offers evidence to help portal implementers make policy and practice decisions. In contrast, no comparable comprehensive summary of research addresses the direct release of and patient access to test results. OBJECTIVE: This scoping review aims to analyze and synthesize published research focused on patient and health care provider perspectives on the direct release of laboratory, imaging, and radiology results to patients via web portals. METHODS: PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were followed. Searches were conducted in CINAHL, MEDLINE, and other databases. Citations were screened in Covidence using the inclusion and exclusion criteria. Primary studies that focused on patient and health care provider perspectives on patient access to laboratory and imaging results via web portals were included. An updated search was conducted up to August 2023. Our review included 27 articles-20 examining patient views, 3 examining provider views, and 4 examining both patient and provider views. Data extraction and inductive data analysis were informed by sensitizing concepts from sociomaterial perspectives, and 15 themes were generated. RESULTS: Patient perspectives (24 papers) were synthesized using nine themes: (1) patterns of use and patient characteristics; (2) emotional response when viewing the results and uncertainty about their implications; (3) understanding test results; (4) preferences for mode and timing of result release; (5). information seeking and patients' actions motivated by viewing results via a portal; (6) contemplating changes in behavior and managing own health; (7) benefits of accessing test results via a portal; (8) limitations of accessing test results via a portal; and (9) suggestions for portal improvement. Health care provider perspectives (7 papers) were synthetized into six themes: (1) providers' view of benefits of patient access to results via the portal; (2) effects on health care provider workload; (3) concerns about patient anxiety; (4) timing of result release into the patient portal; (5) the method of result release into the patient portal: manual versus automatic release; and (6) the effects of hospital health information technology system on patient quality outcomes. CONCLUSIONS: The timing of the release of test results emerged as a particularly important topic. In some countries, the policy context may motivate immediate release of most tests directly into patient portals. However, our findings aim to make policy makers, health administrators, and other stakeholders aware of factors to consider when making decisions about the timing of result release. This review is sensitive to the characteristics of patient populations and portal technology and can inform result release framework policies. The findings are timely, as patient portals have become more common internationally.

Diagnosis clarification by generalization to patient-friendly terms and definitions: Validation study.

BACKGROUND: Now that patients increasingly get access to their healthcare records, its contents require clarification. The use of patient-friendly terms and definitions can help patients and their significant others understand their medical data. However, it is costly to make patient-friendly descriptions for the myriad of terms used in the medical domain. Furthermore, a description in more general terms, leaving out some of the details, might already be sufficient for a layperson. We developed an algorithm that employs the SNOMED CT hierarchy to generalize diagnoses to a limited set of concepts with patient-friendly terms for this purpose. However, generalization essentially implies loss of detail and might result in errors, hence these generalizations remain to be validated by clinicians. We aim to assess the medical validity of diagnosis clarification by generalization to concepts with patient-friendly terms and definitions in SNOMED CT. Furthermore, we aim to identify the characteristics that render clarifications invalid. RESULTS: Two raters identified errors in 12.7% (95% confidence interval - CI: 10.7-14.6%) of a random sample of 1,131 clarifications and they considered 14.3% (CI: 12.3-16.4%) of clarifications to be unacceptable to show to a patient. The intraclass correlation coefficient of the interrater reliability was 0.34 for correctness and 0.43 for acceptability. Errors were mostly related to the patient-friendly terms and definitions used in the clarifications themselves, but also to terminology mappings, terminology modelling, and the clarification algorithm. Clarifications considered to be most unacceptable were those that provide wrong information and might cause unnecessary worry. CONCLUSIONS: We have identified problems in generalizing diagnoses to concepts with patient-friendly terms. Diagnosis generalization can be used to create a large amount of correct and acceptable clarifications, reusing patient-friendly terms and definitions across many medical concepts. However, the correctness and acceptability have a strong dependency on terminology mappings and modelling quality, as well as the quality of the terms and definitions themselves. Therefore, validation and quality improvement are required to prevent incorrect and unacceptable clarifications, before using the generalizations in practice.

Perspective of Patients with Metastatic Breast Cancer on Electronic Access to Scan Results: Mixed-Methods Study.

BACKGROUND: Patient-accessible electronic health records give patients quick and easy access to their health care data, enabling them to view their test results online prior to a clinic visit. Hospital reports can be difficult for patients to understand, however, and can lead to unnecessary anxiety. OBJECTIVE: We aimed to investigate the attitudes and experiences of Danish patients with metastatic breast cancer in using electronic health records to view their own scan results. METHODS: We conducted a prospective mixed-methods study in a sequential design at our institution during 2018. Participants were women with metastatic breast cancer who were having scans every 3 months (combined positron emission tomography and computed tomography or computed tomography alone) to monitor treatment effects. Participants first received an online questionnaire about their knowledge and use of online access to scan results. We then conducted semistructured interviews with 4 women who used the online access to view their scan results. RESULTS: A total of 46 patients received the questionnaire (median age 66, SD 11.8, range 34-84 years). Of these women, 38 (83%) completed the survey (median age 69, SD 10.7, range 42-84 years). Most patients (34/38) were aware of the opportunity to access their reports online, but only 40% (15/38) used this access to read their scan results. Barriers to online access were (1) anxiety over reading the scan results in the absence of clinician support, and (2) a preference to receive all disease information at their next hospital appointment. The patients who read their scan result found that facilitators were greater transparency and empowerment, and barriers were the consequences of reading bad news, the feeling of dilemma about the access, and the medical terminology. CONCLUSIONS: Patients with metastatic breast cancer generally had a positive attitude toward electronic access to their scan results, and those who used this opportunity played a greater participatory role in their disease and its management. Others described the potential distress this opportunity caused. The study findings suggest that immediate online access to scan results should be available to patients, but it needs a support function alongside that ensures optimal patient care.

Evaluation of lexical clarification by patients reading their clinical notes: a quasi-experimental interview study.

BACKGROUND: Patients benefit from access to their medical records. However, clinical notes and letters are often difficult to comprehend for most lay people. Therefore, functionality was implemented in the patient portal of a Dutch university medical centre (UMC) to clarify medical terms in free-text data. The clarifications consisted of synonyms and definitions from a Dutch medical terminology system. We aimed to evaluate to what extent these lexical clarifications match the information needs of the patients. Secondarily, we evaluated how the clarifications and the functionality could be improved. METHODS: We invited participants from the patient panel of the UMC to read their own clinical notes. They marked terms they found difficult and rated the ease of these terms. After the functionality was activated, participants rated the clarifications provided by the functionality, and the functionality itself regarding ease and usefulness. Ratings were on a scale from 0 (very difficult) to 100 (very easy). We calculated the median number of terms not understood per participant, the number of terms with a clarification, the overlap between these numbers (coverage), and the precision and recall. RESULTS: We included 15 participants from the patient panel. They marked a median of 21 (IQR 19.5-31) terms as difficult in their text files, while only a median of 2 (IQR 1-4) of these terms were clarified by the functionality. The median precision was 6.5% (IQR 2.3-14.25%) and the median recall 8.3% (IQR 4.7-13.5%) per participant. However, participants rated the functionality with median ease of 98 (IQR 93.5-99) and a median usefulness of 79 (IQR 52.5-97). Participants found that many easy terms were unnecessarily clarified, that some clarifications were difficult, and that some clarifications contained mistakes. CONCLUSIONS: Patients found the functionality easy to use and useful. However, in its current form it only helped patients to understand few terms they did not understand, patients found some clarifications to be difficult, and some to be incorrect. This shows that lexical clarification is feasible even when limited terms are available, but needs further development to fully use its potential.

Communicating laboratory results to patients and families.

People are increasingly able to access their laboratory results via patient portals. The potential benefits provided by such access, such as reductions in patient burden and improvements in patient satisfaction, disease management, and medical decision making, also come with potentially valid concerns about such results causing confusion or anxiety among patients. However, it is possible to clearly convey the meaning of results and, when needed, indicate required action by designing systems to present laboratory results adapted to the people who will use them. Systems should support people in converting the potentially meaningless data of results into meaningful information and actionable knowledge. We offer 10 recommendations toward this goal: (1) whenever possible, provide a clear takeaway message for each result. (2) Signal whether differences are meaningful or not. (3) When feasible, provide thresholds for concern and action. (4) Individualize the frame of reference by allowing custom reference ranges. (5) Ensure the system is accessible. (6) Provide conversion tools along with results. (7) Design in collaboration with users. (8) Design for both new and experienced users. (9) Make it easy for people use the data as they wish. (10) Collaborate with experts from relevant fields. Using these 10 methods and strategies renders access to laboratory results into meaningful and actionable communication. In this way, laboratories and medical systems can support patients and families in understanding and using their laboratory results to manage their health.

Patient and Health Care Provider Experiences With a Recently Introduced Patient Portal in an Academic Hospital in the Netherlands: Mixed Methods Study.

BACKGROUND: In the Netherlands, the health care system and related information technology landscape are fragmented. Recently, hospitals have started to launch patient portals. It is not clear how these portals are used by patients and their health care providers (HCPs). OBJECTIVE: The objective of this study was to explore the adoption, use, usability, and usefulness of a recently introduced patient portal in an academic hospital to learn lessons for the implementation of patient portals in a fragmented health care system. METHODS: A mixed methods study design was used. In the quantitative study arm, characteristics of patients who used the portal were analyzed, in addition to the utilization of the different functionalities of the portal. In the qualitative study arms, think-aloud observations were made to explore usability. Focus group discussions were conducted among patients and HCPs of the dermatology and ophthalmology outpatient departments. Thematic content analysis of qualitative data was carried out and overarching themes were identified using a framework analysis. RESULTS: One year after the introduction of the portal, 24,514 patients, 13.49% of all patients who visited the hospital, had logged in to the portal. Adoption of the portal was associated with the age group 45 to 75 years, a higher socioeconomic status, and having at least one medical diagnosis. Overarching themes from the qualitative analyses were (1) usability and user-friendliness of the portal, (2) HCP-patient communication through the portal, (3) usefulness of the information that can be accessed through the portal, (4) integration of the portal in care and work processes, and (5) HCP and patient roles and relationships. CONCLUSIONS: One year after the introduction of the patient portal, patients and HCPs who used the portal recognized the potential of the portal to engage patients in their care processes, facilitate patient-HCP communication, and increase patient convenience. Uncertainties among patients and HCPs about how to use the messaging functionality and limited integration of the portal in care and work processes are likely to have limited portal use and usefulness.

Methods to Evaluate the Effects of Internet-Based Digital Health Interventions for Citizens: Systematic Review of Reviews.

BACKGROUND: Digital health can empower citizens to manage their health and address health care system problems including poor access, uncoordinated care and increasing costs. Digital health interventions are typically complex interventions. Therefore, evaluations present methodological challenges. OBJECTIVE: The objective of this study was to provide a systematic overview of the methods used to evaluate the effects of internet-based digital health interventions for citizens. Three research questions were addressed to explore methods regarding approaches (study design), effects and indicators. METHODS: We conducted a systematic review of reviews of the methods used to measure the effects of internet-based digital health interventions for citizens. The protocol was developed a priori according to Preferred Reporting Items for Systematic review and Meta-Analysis Protocols and the Cochrane Collaboration methodology for overviews of reviews. Qualitative, mixed-method, and quantitative reviews published in English or French from January 2010 to October 2016 were included. We searched for published reviews in PubMed, EMBASE, The Cochrane Database of Systematic Reviews, CINHAL and Epistemonikos. We categorized the findings based on a thematic analysis of the reviews structured around study designs, indicators, types of interventions, effects and perspectives. RESULTS: A total of 20 unique reviews were included. The most common digital health interventions for citizens were patient portals and patients' access to electronic health records, covered by 10/20 (50%) and 6/20 (30%) reviews, respectively. Quantitative approaches to study design included observational study (15/20 reviews, 75%), randomized controlled trial (13/20 reviews, 65%), quasi-experimental design (9/20 reviews, 45%), and pre-post studies (6/20 reviews, 30%). Qualitative studies or mixed methods were reported in 13/20 (65%) reviews. Five main categories of effects were identified: (1) health and clinical outcomes, (2) psychological and behavioral outcomes, (3) health care utilization, (4) system adoption and use, and (5) system attributes. Health and clinical outcomes were measured with both general indicators and disease-specific indicators and reported in 11/20 (55%) reviews. Patient-provider communication and patient satisfaction were the most investigated psychological and behavioral outcomes, reported in 13/20 (65%) and 12/20 (60%) reviews, respectively. Evaluation of health care utilization was included in 8/20 (40%) reviews, most of which focused on the economic effects on the health care system. CONCLUSIONS: Although observational studies and surveys have provided evidence of benefits and satisfaction for patients, there is still little reliable evidence from randomized controlled trials of improved health outcomes. Future evaluations of digital health interventions for citizens should focus on specific populations or chronic conditions which are more likely to achieve clinically meaningful benefits and use high-quality approaches such as randomized controlled trials. Implementation research methods should also be considered. We identified a wide range of effects and indicators, most of which focused on patients as main end users. Implications for providers and the health system should also be included in evaluations or monitoring of digital health interventions.

Implementation of a patient-facing genomic test report in the electronic health record using a web-application interface.

BACKGROUND: Genomic medicine is emerging into clinical care. Communication of genetic laboratory results to patients and providers is hampered by the complex technical nature of the laboratory reports. This can lead to confusion and misinterpretation of the results resulting in inappropriate care. Patients usually do not receive a copy of the report leading to further opportunities for miscommunication. To address these problems, interpretive reports were created using input from the intended end users, patients and providers. This paper describes the technical development and deployment of the first patient-facing genomic test report (PGR) within an electronic health record (EHR) ecosystem using a locally developed standards-based web-application interface. METHODS: A patient-facing genomic test report with a companion provider report was configured for implementation within the EHR using a locally developed software platform, COMPASS™. COMPASS™ is designed to manage secure data exchange, as well as patient and provider access to patient reported data capture and clinical display tools. COMPASS™ is built using a Software as a Service (SaaS) approach which exposes an API that apps can interact with. RESULTS: An authoring tool was developed that allowed creation of patient-specific PGRs and the accompanying provider reports. These were converted to a format that allowed them to be presented in the patient portal and EHR respectively using the existing COMPASS™ interface thus allowing patients, caregivers and providers access to individual reports designed for the intended end user. CONCLUSIONS: The PGR as developed was shown to enhance patient and provider communication around genomic results. It is built on current standards but is designed to support integration with other tools and be compatible with emerging opportunities such as SMART on FHIR. This approach could be used to support genomic return of results as the tool is scalable and generalizable.

Presentation of laboratory test results in patient portals: influence of interface design on risk interpretation and visual search behaviour.

BACKGROUND: Patient portals are considered valuable instruments for self-management of long term conditions, however, there are concerns over how patients might interpret and act on the clinical information they access. We hypothesized that visual cues improve patients' abilities to correctly interpret laboratory test results presented through patient portals. We also assessed, by applying eye-tracking methods, the relationship between risk interpretation and visual search behaviour. METHODS: We conducted a controlled study with 20 kidney transplant patients. Participants viewed three different graphical presentations in each of low, medium, and high risk clinical scenarios composed of results for 28 laboratory tests. After viewing each clinical scenario, patients were asked how they would have acted in real life if the results were their own, as a proxy of their risk interpretation. They could choose between: 1) Calling their doctor immediately (high interpreted risk); 2) Trying to arrange an appointment within the next 4 weeks (medium interpreted risk); 3) Waiting for the next appointment in 3 months (low interpreted risk). For each presentation, we assessed accuracy of patients' risk interpretation, and employed eye tracking to assess and compare visual search behaviour. RESULTS: Misinterpretation of risk was common, with 65% of participants underestimating the need for action across all presentations at least once. Participants found it particularly difficult to interpret medium risk clinical scenarios. Participants who consistently understood when action was needed showed a higher visual search efficiency, suggesting a better strategy to cope with information overload that helped them to focus on the laboratory tests most relevant to their condition. CONCLUSIONS: This study confirms patients' difficulties in interpreting laboratories test results, with many patients underestimating the need for action, even when abnormal values were highlighted or grouped together. Our findings raise patient safety concerns and may limit the potential of patient portals to actively involve patients in their own healthcare.

Personal Health Records: A Systematic Literature Review.

BACKGROUND: Information and communication technology (ICT) has transformed the health care field worldwide. One of the main drivers of this change is the electronic health record (EHR). However, there are still open issues and challenges because the EHR usually reflects the partial view of a health care provider without the ability for patients to control or interact with their data. Furthermore, with the growth of mobile and ubiquitous computing, the number of records regarding personal health is increasing exponentially. This movement has been characterized as the Internet of Things (IoT), including the widespread development of wearable computing technology and assorted types of health-related sensors. This leads to the need for an integrated method of storing health-related data, defined as the personal health record (PHR), which could be used by health care providers and patients. This approach could combine EHRs with data gathered from sensors or other wearable computing devices. This unified view of patients' health could be shared with providers, who may not only use previous health-related records but also expand them with data resulting from their interactions. Another PHR advantage is that patients can interact with their health data, making decisions that may positively affect their health. OBJECTIVE: This work aimed to explore the recent literature related to PHRs by defining the taxonomy and identifying challenges and open questions. In addition, this study specifically sought to identify data types, standards, profiles, goals, methods, functions, and architecture with regard to PHRs. METHODS: The method to achieve these objectives consists of using the systematic literature review approach, which is guided by research questions using the population, intervention, comparison, outcome, and context (PICOC) criteria. RESULTS: As a result, we reviewed more than 5000 scientific studies published in the last 10 years, selected the most significant approaches, and thoroughly surveyed the health care field related to PHRs. We developed an updated taxonomy and identified challenges, open questions, and current data types, related standards, main profiles, input strategies, goals, functions, and architectures of the PHR. CONCLUSIONS: All of these results contribute to the achievement of a significant degree of coverage regarding the technology related to PHRs.

Reasons and barriers for using a patient portal: survey among patients with diabetes mellitus.

BACKGROUND: The use of a Web portal for patients with diabetes mellitus to access their own personal health record may result in improved diabetes outcomes. However, the adoption by patients is slow. This may be caused by patient characteristics, but also by the content, layout, and promotion of the portal. Detailed knowledge about this could help increase patients' participation in Web portals. OBJECTIVE: The aim was to study the opinions of patients with diabetes and identify perceived barriers to using a Web portal to optimize its use. METHODS: We conducted a survey among patients with type 1 and type 2 diabetes mellitus from 62 primary care practices and 1 outpatient hospital clinic in the central area of the Netherlands who all used the same electronic health record with a Web portal. Questionnaires about patient characteristics, opinions about reasons for use or nonuse, and about portal content were sent to 1500 patients with a login and 3000 patients without a login to the Web portal. Patient groups were stratified according to login frequency. Demographic and diabetes-related variables were analyzed with multivariable regression analysis. RESULTS: The total response rate was 66.63% (2391/4399); 1390 of 4399 patients (31.60%) were eligible for analysis. There were 413 regular users (login frequency more than once) and 758 nonusers (no login). Most nonusers (72.4%) stated that the main reason for not requesting a login was that they were unaware of the existence of the portal. Other barriers reported by patients were disinterest in managing their own disease (28.5%, 216/758) and feelings of inadequacy with the use of computers and Internet (11.6%, 88/758). Patients treated by a general practitioner were more frequently nonusers compared to patients treated by an internist (78.8%, 666/846 vs 28.3%, 92/325; P<.001) and more users than nonusers became aware of the Web portal through their physician (94.9%, 392/413 vs 48.8%, 102/209; P<.001). Nonusers perceived specific portal content as not as useful as regular users did, especially access to laboratory values (71.7%, 383/534 vs 92.3%, 372/403), rereading clinic visits (61.3%, 320/522 vs 89.6%, 360/402), e-messaging (52.0%, 262/504 vs 74.6%, 299/401), and uploading results to the glucose diary (45.3%, 229/506 vs 74.0%, 288/400; all P<.001). CONCLUSIONS: Our study shows that unawareness of the patient portal is the main barrier of enrollment. Users and nonusers perceive the usefulness of the portal differently and do not have the same recommendations for additional functionalities. To increase patients' participation in a Web portal, the unawareness of its existence and its possibilities need to be addressed by their health care professionals.

Patient online access to medical records in general practice: Perceived effects after one year follow-up.

OBJECTIVE: Online access to medical records is expected to foster patient empowerment and patient-centred healthcare. However, data on actual experienced effects remain limited. We aimed to examine the development of effects patients perceive from online access. METHODS: A nationwide online survey (N = 1769) evaluated Dutch patients' use of online access and beliefs about its effects on 16 outcomes at baseline and one-year follow-up. Analyses of Variance (ANOVA) were used to examine within-person belief changes across three user groups: patients who 1) used online access before the study, 2) started use during the study, and 3) did not use it at all. RESULTS: There was a small decline in five beliefs around online access facilitating patient empowerment and participation in participants who started using online access during the study compared to at least one other user group. Most changes in beliefs did not differ between groups. CONCLUSION: No evidence of benefits from online access was found. The findings might indicate inadequacies in the current system of online access. Possibly, the benefits of online access are contingent upon portal improvements and changes in documentation practices. PRACTICE IMPLICATION: Records need to be easily accessible and comprehensible for patients. Consultation practices should enable patient participation.

Online access to doctors' notes: patient concerns about privacy.

BACKGROUND: Offering patients online access to medical records, including doctors' visit notes, holds considerable potential to improve care. However, patients may worry about loss of privacy when accessing personal health information through Internet-based patient portals. The OpenNotes study provided patients at three US health care institutions with online access to their primary care doctors' notes and then collected survey data about their experiences, including their concerns about privacy before and after participation in the intervention. OBJECTIVE: To identify patients' attitudes toward privacy when given electronic access to their medical records, including visit notes. METHODS: The design used a nested cohort study of patients surveyed at baseline and after a 1-year period during which they were invited to read their visit notes through secure patient portals. Participants consisted of 3874 primary care patients from Beth Israel Deaconess Medical Center (Boston, MA), Geisinger Health System (Danville, PA), and Harborview Medical Center (Seattle, WA) who completed surveys before and after the OpenNotes intervention. The measures were patient-reported levels of concern regarding privacy associated with online access to visit notes. RESULTS: 32.91% of patients (1275/3874 respondents) reported concerns about privacy at baseline versus 36.63% (1419/3874 respondents) post-intervention. Baseline concerns were associated with non-white race/ethnicity and lower confidence in communicating with doctors, but were not associated with choosing to read notes or desire for continued online access post-intervention (nearly all patients with notes available chose to read them and wanted continued access). While the level of concern among most participants did not change during the intervention, 15.54% (602/3874 respondents, excluding participants who responded "don't know") reported more concern post-intervention, and 12.73% (493/3874 respondents, excluding participants who responded "don't know") reported less concern. CONCLUSIONS: When considering online access to visit notes, approximately one-third of patients had concerns about privacy at baseline and post-intervention. These perceptions did not deter participants from accessing their notes, suggesting that the benefits of online access to medical records may outweigh patients' perceived risks to privacy.

Evaluating self-management behaviors of diabetic patients in a telehealthcare program: longitudinal study over 18 months.

BACKGROUND: Self-management is an important skill for patients with diabetes, and it involves frequent monitoring of glucose levels and behavior modification. Techniques to enhance the behavior changes of diabetic patients have been developed, such as diabetes self-management education and telehealthcare. Although the patients are engaged in self-management activities, barriers to behavior changes remain and additional work is necessary to address the impact of electronic media and telehealthcare on patient self-care behaviors. OBJECTIVE: The aims of this study were to (1) explore the behaviors of diabetic patients interacting with online applications, (2) determine the impact of a telehealthcare program among 7 self-care behaviors of the patients, and (3) determine the changes in glycosylated hemoglobin (HbA1c) levels. METHODS: A telehealthcare program was conducted to assist the patients with 7 self-care activities. The telehealthcare program lasted for 18 months and included the use of a third-generation mobile telecommunications glucometer, an online diabetes self-management system, and a teleconsultant service. We analyzed the data of 59 patients who participated in the telehealthcare program and 103 who did not. The behavioral assessments and the HbA1c data were collected and statistically analyzed to determine whether the telehealthcare services had an impact on the patients. We divided the 18-month period into 3 6-month intervals and analyzed the parameters of patients assisted by the telehealthcare service at different time points. We also compared the results of those who were assisted by the telehealthcare service with those who were not. RESULTS: There was a significant difference in monitoring blood glucose between the beginning and the end of the patient participation (P=.046) and between the overall period and the end of patient participation (P<.001). Five behaviors were significantly different between the intervention and control patients: being active (P<.001), healthy eating (P<.001), taking medication (P<.001), healthy coping (P=.02), and problem solving (P<.001). Monitoring of blood glucose was significantly different (P=.02) during the 6-12 month stage of patient participation between the intervention and control patients. A significant difference between the beginning and the 6-12 month stage of patient participation was observed for the mean value of HbA1c level (P=.02), and the differences between the overall HbA1c variability and the variability of each 6-month interval was also significant. CONCLUSIONS: Telehealthcare had a positive effect on diabetic patients. This study had enhanced blood glucose monitoring, and the patients in the program showed improvements in glycemic control. The self-care behaviors affect patient outcomes, and the changes of behavior require time to show the effects.

Patient online access to general practice medical records: A qualitative study on patients' needs and expectations.

BACKGROUND: Patient online access to medical records is assumed to foster patient empowerment and advance patient-centred healthcare. Since July 2020, patients in the Netherlands have been legally entitled to electronically access their medical record in general practice. Experience from pioneering countries has shown that despite high patient interest, user rates often remain low. How to best support implementation depends on individual needs and expectations of patient populations, which are as yet unknown in the Dutch context. OBJECTIVE: To understand Dutch patients' needs and expectations with regard to online access to their medical record in general practice. METHOD: Twenty participants completed semi-structured individual interviews via video or telephone call. Transcripts of interviews underwent template analysis combining deductive and inductive coding using Atlas.ti software. RESULTS: Patients' needs and expectations ranged across three overlapping areas: (i) prerequisites for getting online access; (ii) using online access; and (iii) the impact on interaction with healthcare providers. Patients expected benefits from online access such as better overview, empowerment and improved communication with their general practitioner but identified needs regarding technological difficulties, data privacy and complex medical language in their record. CONCLUSION: The concerns and obstacles participants identified point towards the need for organisational changes in general practice, for example, adjusted documentation practices, and the key role of the general practitioner and staff in promoting and facilitating online access. IMPLICATIONS: Implementation strategies addressing needs identified in this study may help to unlock the full potential of online access to achieve desired outcomes of patient involvement and satisfaction.

Designing a Personalized Health Dashboard: Interdisciplinary and Participatory Approach.

BACKGROUND: Within the Dutch Child Health Care (CHC), an online tool (360° CHILD-profile) is designed to enhance prevention and transformation toward personalized health care. From a personalized preventive perspective, it is of fundamental importance to timely identify children with emerging health problems interrelated to multiple health determinants. While digitalization of children's health data is now realized, the accessibility of data remains a major challenge for CHC professionals, let alone for parents/youth. Therefore, the idea was initiated from CHC practice to develop a novel approach to make relevant information accessible at a glance. OBJECTIVE: This paper describes the stepwise development of a dashboard, as an example of using a design model to achieve visualization of a comprehensive overview of theoretically structured health data. METHODS: Developmental process is based on the nested design model with involvement of relevant stakeholders in a real-life context. This model considers immediate upstream validation within 4 cascading design levels: Domain Problem and Data Characterization, Operation and Data Type Abstraction, Visual Encoding and Interaction Design, and Algorithm Design. This model also includes impact-oriented downstream validation, which can be initiated after delivering the prototype. RESULTS: A comprehensible 360° CHILD-profile is developed: an online accessible visualization of CHC data based on the theoretical concept of the International Classification of Functioning, Disability and Health. This dashboard provides caregivers and parents/youth with a holistic view on children's health and "entry points" for preventive, individualized health plans. CONCLUSIONS: Describing this developmental process offers guidance on how to utilize the nested design model within a health care context.

Towards an Adoption Framework for Patient Access to Electronic Health Records: Systematic Literature Mapping Study.

BACKGROUND: Patient access to electronic health records (EHRs) is associated with increased patient engagement and health care quality outcomes. However, the adoption of patient portals and personal health records (PHRs) that facilitate this access is impeded by barriers. The Clinical Adoption Framework (CAF) has been developed to analyze EHR adoption, but this framework does not consider the patient as an end-user. OBJECTIVE: We aim to extend the scope of the CAF to patient access to EHRs, develop guidance documentation for the application of the CAF, and assess the interrater reliability. METHODS: We systematically reviewed existing systematic reviews on patients' access to EHRs and PHRs. Results of each review were mapped to one of the 43 CAF categories. Categories were iteratively adapted when needed. We measured the interrater reliability with Cohen's unweighted kappa and statistics regarding the agreement among reviewers on mapping quotes of the reviews to different CAF categories. RESULTS: We further defined the framework's inclusion and exclusion criteria for 33 of the 43 CAF categories and achieved a moderate agreement among the raters, which varied between categories. CONCLUSIONS: In the reviews, categories about people, organization, system quality, system use, and the net benefits of system use were addressed more often than those about international and regional information and communication technology infrastructures, standards, politics, incentive programs, and social trends. Categories that were addressed less might have been underdefined in this study. The guidance documentation we developed can be applied to systematic literature reviews and implementation studies, patient and informal caregiver access to EHRs, and the adoption of PHRs.