Adult patient access to electronic health records.

BACKGROUND: To support patient-centred care, healthcare organisations increasingly offer patients access to data stored in the institutional electronic health record (EHR). OBJECTIVES: Primary objective 1. To assess the effects of providing adult patients with access to electronic health records (EHRs) alone or with additional functionalities on a range of patient, patient-provider, and health resource consumption outcomes, including patient knowledge and understanding, patient empowerment, patient adherence, patient satisfaction with care, adverse events, health-related quality of life, health-related outcomes, psychosocial health outcomes, health resource consumption, and patient-provider communication. Secondary objective 1. To assess whether effects of providing adult patients with EHR access alone versus EHR access with additional functionalities differ among patient groups according to age, educational level, or different status of disease (chronic or acute). SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, PsycINFO, CINAHL, and Scopus in June 2017 and in April 2020. SELECTION CRITERIA: Randomised controlled trials and cluster-randomised trials of EHR access with or without additional functionalities for adults with any medical condition. DATA COLLECTION AND ANALYSIS: We used standard Cochrane methodological procedures. MAIN RESULTS: We included 10 studies with 78 to 4500 participants and follow-up from 3 to 24 months. Nine studies assessed the effects of EHR with additional functionalities, each addressing a subset of outcomes sought by this review. Five studies focused on patients with diabetes mellitus, four on patients with specific diseases, and one on all patients. All studies compared EHR access alone or with additional functionalities plus usual care versus usual care only. No studies assessing the effects of EHR access alone versus EHR access with additional functionalities were identified. Interventions required a variety of data within the EHR, such as patient history, problem list, medication, allergies, and lab results. In addition to EHR access, eight studies allowed patients to share self-documented data, seven offered individualised disease management functions, seven offered educational disease-related information, six supported secure communication, and one offered preventive reminders. Only two studies were at low or unclear risk of bias across domains. Meta-analysis could not be performed, as participants, interventions, and outcomes were too heterogeneous, and most studies presented results based on different adjustment methods or variables. The quality of evidence was rated as low or very low across outcomes. Overall differences between intervention and control groups, if any, were small. The relevance of any small effects remains unclear for most outcomes because in most cases, trial authors did not define a minimal clinically important difference. Overall, results suggest that the effects of EHR access alone and with additional functionalities are mostly uncertain when compared with usual care. Patient knowledge and understanding: very low-quality evidence is available from one study, so we are uncertain about effects of the intervention on patient knowledge about diabetes and blood glucose testing. Patient empowerment: low-quality evidence from three studies suggests that the intervention may have little or no effect on patient empowerment measures. Patient adherence: low-quality evidence from two studies suggests that the intervention may slightly improve adherence to the process of monitoring risk factors and preventive services. Effects on medication adherence are conflicting in two studies; this may or may not improve to a clinically relevant degree. Patient satisfaction with care: low-quality evidence from three studies suggests that the intervention may have little or no effect on patient satisfaction, with conflicting results. Adverse events: two small studies reported on mortality; one of these also reported on serious and other adverse events, but sample sizes were too small for small differences to be detected. Therefore, low-quality evidence suggests that the intervention may have little to no effect on mortality and other adverse events. Health-related quality of life: only very low-quality evidence from one study is available. We are uncertain whether the intervention improves disease-specific quality of life of patients with asthma. Health-related outcomes: low-quality evidence from eight studies suggests that the intervention may have little to no effect on asthma control, glycosylated haemoglobin (HbA1c) levels, blood pressure, low-density lipoprotein or total cholesterol levels, body mass index or weight, or 10-year Framingham risk scores. Low-quality evidence from one study suggests that the composite scores of risk factors for diabetes mellitus may improve slightly with the intervention, but there is uncertainty about effects on ophthalmic medications or intraocular pressure. Psychosocial health outcomes: no study investigated psychosocial health outcomes in a more than anecdotal way. Health resource consumption: low-quality evidence for adult patients in three studies suggests that there may be little to no effect of the intervention on different measures of healthcare use. Patient-provider communication: very low-quality evidence is available from a single small study, and we are uncertain whether the intervention improves communication measures, such as the number of messages sent. AUTHORS' CONCLUSIONS: The effects of EHR access with additional functionalities in comparison with usual care for the most part are uncertain. Only adherence to the process of monitoring risk factors and providing preventive services as well as a composite score of risk factors for diabetes mellitus may improve slightly with EHR access with additional functionalities. Due to inconsistent terminology in this area, our search may have missed relevant studies. As the overall quality of evidence is very low to low, future research is likely to change these results. Further trials should investigate the impact of EHR access in a broader range of countries and clinical settings, including more patients over a longer period of follow-up, as this may increase the likelihood of detecting effects of the intervention, should these exist. More studies should focus on assessing outcomes such as patient empowerment and behavioural outcomes, rather than concentrating on health-related outcomes alone. Future studies should distinguish between effects of EHR access only and effects of additional functionalities, and investigate the impact of mobile EHR tools. Future studies should include information on usage patterns, and consider the potential for widening health inequalities with implementation of EHR access. A taxonomy for EHR access and additional functionalities should be developed to promote consistency and comparability of outcome measures, and facilitate future reviews by better enabling cross-study comparisons.

Experiences With Developing and Using Vital Sign Telemonitoring to Support Mobile Nursing in Rural Regions: Feasibility and Usability Study.

BACKGROUND: Modern information and communication technology has the potential to support mobile care in rural regions such as the Alpine region, which is characterized by long distances or even physically unreachable areas. OBJECTIVE: This study investigated the potential of supporting mobile nursing organizations in rural regions with the use of mobile telemonitoring systems in a case study setting. METHODS: As a subproject of the European Union-funded project INTESI, the VITAl parameter MOnitoring (VITAMO) project gathered stakeholders' requirements for telemonitoring support of mobile care in rural regions and then developed and implemented a prototype system that was used for a 3-month test period with a local nursing organization in Austria. Log analysis, surveys, and interviews were used to evaluate the system according to the Technology Acceptance Model. The focus was technology assessment and user satisfaction of both patients and nurses. RESULTS: Participants were provided Bluetooth devices to measure blood pressure, body weight, and blood glucose and to track activity. They also received a tablet with a mobile internet connection to see the results. The nurses were able to access the results remotely. Regularly executed speed tests and log analysis demonstrated the availability of high-speed mobile internet in the rural test region. Log analysis, surveys, and interviews revealed the suitability of the technology environment and showed that the system was easy to use and potentially useful. The perceived usefulness for supporting mobile care was rated meaningfully low, and the frequency of nurses using the tool declined continuously over the field test period. Further group discussions investigated this issue. CONCLUSIONS: While the technology environment with mobile internet, Bluetooth devices, and smart vital sign monitoring devices was adequate and suitable to support mobile nursing in rural regions, the potential benefit for the nursing organization could not be confirmed. Further analysis revealed that operational care processes did not follow a well-defined care strategy. Technology has the potential to leverage the available environment for developing meaningful solutions. These experiences could contribute to further investigations that need to identify and analyze existing mobile care processes at an organizational level.

Epidemiology and Treatment of Patients with Haemophilia in Austria-Update from the Austrian Haemophilia Registry.

The Austrian Haemophilia Registry collects epidemiological data on patients with haemophilia, on treatment modalities and potential side effects. The Registry covers more than 85% of the assumed total number of haemophilia patients in Austria. This report summarizes data on 753 patients: 84.3% (635) have haemophilia A and 15.7% (118) have haemophilia B. Patients' median age is 34 years (range: 1-93 years). Of the total cohort, 39.0% (294) patients have severe haemophilia, 11.3% (85) moderate haemophilia, and 49.4% (372) mild haemophilia. Of the patients with severe haemophilia, 38.4% (113) have been infected with hepatitis C virus (HCV) and 12.6% (37) are human immunodeficiency virus (HIV) positive. Overall, 10.6% (67) of patients with haemophilia A and 1.7% (2) of those with haemophilia B have had an inhibitor in their history. Among patients with severe haemophilia, 68.4% (201) receive prophylaxis and 28.6% (84) receive on-demand therapy. There are 65.0% (191) patients with severe haemophilia who are treated with recombinant products. In conclusion, most patients with severe haemophilia receive prophylactic treatment. HCV and HIV infections are still important issues in the Austrian haemophilia population.

Building a Community of Inquiry Within an Online-Based Health Informatics Program: Instructional Design and Lessons Learned.

The rapid medical and technological progress and the resulting need for life-long learning lead to the proliferation of online-based programs in health informatics for health care and health informatics professionals. Effective learning in these online-based programs demands close interaction and cooperation between students and instructors. In such cooperative online-based programs, special emphasis is thus put on fostering a community of inquiry between all participants. The online-based master program on Health Information Management at the University UMIT is firmly based on the constructivist theory of situated learning in such a community of inquiry. Online activities in this master program are designed to promote social presence, cognitive presence and teacher presence as preconditions for successful learning. To verify whether these three forms of presences are visible and whether learning was successful, the first four six-week online-based modules with overall 60 participants were analyzed in depth, combining data from community of inquiry surveys, student evaluations, workload assessments and final assessment results. Results indicate that it was possible to build a community of inquiry (with scores of 4.2 and higher) and to foster effective learning. We conclude with recommendations on how to build a community of inquiry in online-based cooperative learning and also discuss some constraints.

An Approach for Dynamic Vital Parameter Monitoring - Prototype Development.

The alpine space is characterized with rural regions, often hard to reach for mobile care. As part of the EU-funded INTESI project, a mobile platform for vital sign self-monitoring for patients who receive mobile care was developed. Based on a thorough analysis of user requirements and available technology a platform was established, that integrates several Bluetooth low energy devices for measuring vital signs. The developed VITAMO app further enables clients and nurses to easily govern measurements and jointly take control of a client's health during the care process. In addition, the system supports the communication of clients and nurses electronically. The internal data structure adheres to current healthcare standards e.g. FHIR and offers easy interfaces for future applications. The complete system was applied in a pilot study and got formally evaluated.

Semantic Web Service Delivery in Healthcare Based on Functional and Non-Functional Properties.

In the past decades, a lot of endeavor has been made on the trans-institutional exchange of healthcare data through electronic health records (EHR) in order to obtain a lifelong, shared accessible health record of a patient. Besides basic information exchange, there is a growing need for Information and Communication Technology (ICT) to support the use of the collected health data in an individual, case-specific workflow-based manner. This paper presents the results on how workflows can be used to process data from electronic health records, following a semantic web service approach that enables automatic discovery, composition and invocation of suitable web services. Based on this solution, the user (physician) can define its needs from a domain-specific perspective, whereas the ICT-system fulfills those needs with modular web services. By involving also non-functional properties for the service selection, this approach is even more suitable for the dynamic medical domain.

The Austrian e-Medikation pilot evaluation: lessons learned from a national medication list.

The objective of this paper is to present results and recommendations from the Austrian e-Medikation pilot project. e-Medikation comprises a national medication list of all prescribed and dispensed medications as well as central medication checks. Evaluation was based on log-file analysis and survey of all participants (physicians, pharmacists, patients). During the evaluation period, 97 physicians, 58 pharmacies and more than 5.000 patients, participated. All user groups found that e-Medikation has the potential to improve patient safety, but that software quality and system architecture is not yet suitable for routine use. The evaluation resulted in 34 recommendations for further development and roll out of e-Medikation in Austria. Most of these recommendations have already been included in the recently passed law concerning the upcoming Austrian electronic health record system called "ELGA".

Functional requirements regarding medical registries--preliminary results.

The term medical registry is used to reference tools and processes to support clinical or epidemiologic research or provide a data basis for decisions regarding health care policies. In spite of this wide range of applications the term registry and the functional requirements which a registry should support are not clearly defined. This work presents preliminary results of a literature review to discover functional requirements which form a registry. To extract these requirements a set of peer reviewed articles was collected. These set of articles was screened by using methods from qualitative research. Up to now most discovered functional requirements focus on data quality (e. g. prevent transcription error by conducting automatic domain checks).

Implementation of a secure and interoperable generic e-Health infrastructure for shared electronic health records based on IHE integration profiles.

INTRODUCTION: The ubiquitous availability of medical or care data for authorized clinicians and nurses is expected to increase quality while reducing costs in the health care sector. The standardized, distributed provision of medical or care data is capable to support the vision of patient centered shared electronic health records (SEHRs). A main contribution to cross-institutional data exchange is provided by Integrating the Healthcare Enterprise (IHE). However, holistic implementations of IHE based eHealth infrastructures for SEHRs are currently rare and security and privacy regulations are not fully covered by existing IHE Integration Profiles. This work aims to point out our experiences and lessons learned from five years of development and the implementation of IHE compliant products. METHODS: Cross-Enterprise Document Sharing (XDS) describes the base components for exchanging medical or care data. A unique patient Identification is described by the Patient Identifier Cross-referencing (PIX) and the Patient Demographics Query (PDQ) Integration Profile. All interactions are logged in an "Audit Record Repository" deployed once per Affinity Domain and defined in the Audit Trail and Node Authentication (ATNA) Integration Profile. RESULTS: Based on the IHE Integration Profile XDS and other Integration Profiles high-level components for eHealth infrastructures and applications, supporting a holistic, secure concept and, based on these concepts, software products for a technical cooperative care infrastructure, has been developed. The products are practically evaluated in a project for setting up an IHE XDS Affinity Domain in the Austrian district of Tyrol and a number of lessons have been learned.

IHE based interoperability - benefits and challenges.

INTRODUCTION: Optimized workflows and communication between institutions involved in a patient's treatment process can lead to improved quality and efficiency in the healthcare sector. Electronic Health Records (EHRs) provide a patient-centered access to clinical data across institutional boundaries supporting the above mentioned aspects. Interoperability is regarded as vital success factor. However a clear definition of interoperability does not exist. The aim of this work is to define and to assess interoperability criteria as required for EHRs. METHODS: The definition and assessment of interoperability criteria is supported by the analysis of existing literature and personal experience as well as by discussions with several domain experts. RESULTS: Criteria for interoperability addresses the following aspects: Interfaces, Semantics, Legal and organizational aspects and Security. The Integrating the Healthcare Enterprises initiative (IHE) profiles make a major contribution to these aspects, but they also arise new problems. Flexibility for adoption to different organizational/regional or other specific conditions is missing. Regional or national initiatives should get a possibility to realize their specific needs within the boundaries of IHE profiles. Security so far is an optional element which is one of IHE greatest omissions. An integrated security approach seems to be preferable. DISCUSSION: Irrespective of the so far practical significance of the IHE profiles it appears to be of great importance, that the profiles are constantly checked against practical experiences and are continuously adapted.

The ISO/IEC 9126-1 as a Supporting Means for the System Development Process of a Patient Information Web Service.

The development of patient information systems faces the mayor problems of increasing and more complex content as well as the introduction of new techniques of system implementation. An integrated development demands for a method to deal with both aspects. The ISO/IEC 9126-1 offers a framework where both views can be integrated to a general view of the system and can be used as a basis for further development. This article wants to introduce the ISO/IEC 9126-1 as a supporting means for the development of patient information systems considering the example of a web service for a patient information system.