Exchanging personal health data with electronic health records: A standardized information model for patient generated health data and observations of daily living.

OBJECTIVE: The development of a middleware information model to facilitate better interoperability between Personal and Electronic Health Record systems in order to allow exchange of Patient Generated Health Data and Observations of Daily Leaving between patients and providers in order to encourage patient self-management. MATERIALS AND METHODS: An information model based on HL7 standards for interoperability has been extended to support PGHD and ODL data types. The new information models uses HL7 CDA to represent data, is instantiated as a Protégé ontology and uses a set of mapping rules to transfer data between Personal and Electronic Health Record systems. RESULTS: The information model was evaluated by executing a set of use case scenarios containing data exported from three consumer health apps, transformed to CDA according to developed mapping rules and validated against a CDA schema. This allowed various challenges to emerge as well as revealed gaps in current standards in use and the information model has been refined accordingly. DISCUSSION AND CONCLUSION: Our proposed middleware solution offers a number of advantages. When modifications are made to either a Personal or Health Electronic Health Record system or any integrated consumer app, they can be incorporated by altering only the instantiation of the information model. Our proposition uses current standards in use such as CDA. The solution is applicable to any EHR system with HL7 CDA support.

Successful linking of patient records between hospital services and general practice to facilitate integrated care in a hospital and health service in south-east Queensland.

This brief paper describes a recent exercise undertaken within a hospital and health service in south-east Queensland to attempt to link patient records between general practice and hospital services. It describes the technical and governance processes undertaken to achieve this link and the challenges experienced to date in linking the two data sources.

[The role of Integrating the Healthcare Enterprise (IHE) in telemedicine]. / Die Rolle von Integrating the Healtcare Enterprise (IHE) in der Telemedizin.

BACKGROUND: Telemedicine systems are today already used in a variety of areas to improve patient care. The lack of standardization in those solutions creates a lack of interoperability of the systems. Internationally accepted standards can help to solve the lack of system interoperability. With Integrating the Healthcare Enterprise (IHE), a worldwide initiative of users and vendors is working on the use of defined standards for specific use cases by describing those use cases in so called IHE Profiles. OBJECTIVES: The aim of this work is to determine how telemedicine applications can be implemented using IHE profiles. METHODS: Based on a literature review, exemplary telemedicine applications are described and technical abilities of IHE Profiles are evaluated. These IHE Profiles are examined for their usability and are then evaluated in exemplary telemedicine application architectures. RESULTS: There are IHE Profiles which can be identified as being useful for intersectoral patient records (e.g. PEHR at Heidelberg), as well as for point to point communication where no patient record is involved. In the area of patient records, the IHE Profile "Cross-Enterprise Document Sharing (XDS)" is often used. The point to point communication can be supported using the IHE "Cross-Enterprise Document Media Interchange (XDM)". IHE-based telemedicine applications offer caregivers the possibility to be informed about their patients using data from intersectoral patient records, but also there are possible savings by reusing the standardized interfaces in other scenarios.

Systems Architecture for a Nationwide Healthcare System.

From a national level to give Internet technology support, the Nationwide Integrated Healthcare System in Uruguay requires a model of Information Systems Architecture. This system has multiple healthcare providers (public and private), and a strong component of supplementary services. Thus, the data processing system should have an architecture that considers this fact, while integrating the central services provided by the Ministry of Public Health. The national electronic health record, as well as other related data processing systems, should be based on this architecture. The architecture model described here conceptualizes a federated framework of electronic health record systems, according to the IHE affinity model, HL7 standards, local standards on interoperability and security, as well as technical advice provided by AGESIC. It is the outcome of the research done by AGESIC and Systems Integration Laboratory (LINS) on the development and use of the e-Government Platform since 2008, as well as the research done by the team Salud.uy since 2013.

Towards the Implementation of an openEHR-based Open Source EHR Platform (a vision paper).

Healthcare Information Systems are a big business. Currently there is an explosion of EHR/EMR products available on the market, and the best tools are really expensive. Many developing countries and healthcare providers cannot access such tools, and for those who can, there is not a clear strategy for the evolution, scaling, and cost of these electronic health products. The lack of standard-based implementations conduct to the creation of isolated information silos that cannot be exploited (i.e. shared between providers to promote a holistic view of each patient's medical history). This paper exposes the main elements behind a Standard-based Open Source EHR Platform that is future-proof and allows to evolve and scale with minimal cost. The proposed EHR Architecture is based on openEHR specifications, adding elements emerged from research and development experiences, leading to a design that can be implemented in any modern technology. Different implementations will be interoperable by design. This Platform will leverage contexts of scarce resources, reusing clinical knowledge, a common set of software components and services.

[Linking claims data and beneficiary survey information to report on the quality of health care: potential, pitfalls, and perspectives]. / Routinedaten der gesetzlichen Krankenversicherung und Versichertenbefragungen in der Qualitätsberichterstattung - Potenzial, Probleme und Perspektiven.

Reports on the quality of care aim at health and patient-reported outcomes in routine clinical care. To achieve meaningful information the study designs must be robust against bias through highly selected patient populations or health care providers but also allow for adequate control of confounding. The article describes the potential and pitfalls of administrative claims data and surveys of beneficiaries. The large potential of using both sources is illustrated in the primary inpatient treatment for prostate cancer. However, linking claims data and patient survey data still leaves some problems to be addressed in the final section. Linking claims data and beneficiary survey information on patient reported outcomes overcomes sectoral barriers and allows for an integrated evaluation of pathways of care in the short-, mid- and long-term. It is economical and well suited for a variety, but not all health care problems. Future efforts might be directed towards more collaboration among sickness funds.

Risk mitigation of shared electronic records system in campus institutions: medical social work practice in singapore.

In 2013, the Singapore General Hospital (SGH) Campus initiated a shared electronic system where patient records and documentations were standardized and shared across institutions within the Campus. The project was initiated to enhance quality of health care, improve accessibility, and ensure integrated (as opposed to fragmented) care for best outcomes in our patients. In mitigating the risks of ICT, it was found that familiarity with guiding ethical principles, and ensuring adherence to regulatory and technical competencies in medical social work were important. The need to negotiate and maneuver in a large environment within the Campus to ensure proactive integrative process helped.

Improving health care service delivery with a national code service.

An implementation of eHealth services including a national code service is ongoing in Finland. The code service shares and maintains all common codes and data structures used in electronic patient records. In this paper, we describe the code service process and the challenges of developing the process as a part of national eHealth services.

Improving integrated care in chronic kidney failure patients with a standard-based interoperability framework.

This paper introduces the evaluation report after fostering a Standard-based Interoperability Framework (SIF) between the Virgen del Rocío University Hospital (VRUH) Haemodialysis (HD) Unit and 5 outsourced HD centres in order to improve integrated care by automatically sharing patients' Electronic Health Record (EHR) and lab test reports. A pre-post study was conducted during fourteen months. The number of lab test reports of both emergency and routine nature regarding to 379 outpatients was computed before and after the integration of the SIF. Before fostering SIF, 19.38 lab tests per patient were shared between VRUH and HD centres, 5.52 of them were of emergency nature while 13.85 were routine. After integrating SIF, 17.98 lab tests per patient were shared, 3.82 of them were of emergency nature while 14.16 were routine. The inclusion of a SIF in the HD Integrated Care Process has led to an average reduction of 1.39 (p=0.775) lab test requests per patient, including a reduction of 1.70 (p=0.084) in those of emergency nature, whereas an increase of 0.31 (p=0.062) was observed in routine lab tests. Fostering this strategy has led to the reduction in emergency lab test requests, which implies a potential improvement of the integrated care.

Improvement of cross-sector communication in the integrated health environment.

Patient care is a complex process with different providers located in various institutions co-operating within an integrated health environment. In spite of technical improvements in medical care, patient information is usually exchanged by paper. Digital and timely communication between regional care providers can improve the exchange of information. Different systems and missing data standards are challenges that have to be met. ByMedConnect, a project sponsored by the Bavarian State Ministry of the Environment and Public Health, develops and demonstrates a communication solution based on the EN 13606 standard. In a first step the dataset, which will be exchanged by the care providers, is defined. ByMedConnect develops the dataset in cooperation with practicing clinicians and converts it via modeling tools into archetypes that provide the base for reliable cross-sector communication. Existing heterogeneous systems are integrated via a dedicated module that transforms legacy data into a normalized representation. Information provided in a standardized form thereby enables semantic interoperability between different systems and allows medical add-on applications to connect. A secure digital communication network guarantees easy and direct data sharing. ByMedConnect aims to evaluate the achieved theoretical preliminary work in practice and to draft approaches, which can be applied beyond the pilot application.

Citizens, seamlessness, and care - inter-relationships and inter-operability.

Health care is currently fragmented, as are its IT systems, and each excludes partner care services which are important in supporting citizen health. Citizens see commercial international interoperability such as in banking, and wonder why the health sector cannot match that even at local level. The focus on inter-operability priorities is on health system interoperability, in the context of a policy of full European interoperability by 2015. However, the priority for citizens is to see coordination of objectives and delivery of care and assurance of day-to-day delivery of integrated care involving not just health but other agencies. A change from international vertical healthcare inter-operability, to horizontal citizen-based inter-operability should be considered the priority.

The economic benefits of health information exchange interoperability for Australia.

OBJECTIVE: To estimate costs and benefits for Australia of implementing health information exchange interoperability among health care providers and other health care stakeholders. DESIGN: A cost-benefit model considering four levels of interoperability (Level 1, paper based; Level 2, machine transportable; Level 3, machine readable; and Level 4, machine interpretable) was developed for Government-funded health services, then validated by expert review. RESULTS: Roll-out costs for Level 3 and Level 4 interoperability were projected to be $21.5 billion and $14.2 billion, respectively, and steady-state costs, $1470 million and $933 million per annum, respectively. Level 3 interoperability would achieve steady-state savings of $1820 million, and Level 4 interoperability, $2990 million, comprising transactions of: laboratory $1180 million (39%); other providers, $893 million (30%); imaging centre, $680 million (23%); pharmacy, $213 million (7%) and public health, $27 million (1%). Net steady-state Level 4 benefits are projected to be $2050 million: $1710 million more than Level 3 benefits of $348 million, reflecting reduced interface costs for Level 4 interoperability due to standardisation of the semantic content of Level 4 messages. CONCLUSIONS: Benefits to both providers and society will accrue from the implementation of interoperability. Standards are needed for the semantic content of clinical messages, in addition to message exchange standards, for the full benefits of interoperability to be realised. An Australian Government policy position supporting such standards is recommended.

Enhancement of MML medical data exchange standard for a localized Chinese version.

Medical Markup Language (MML) is a standard for the exchange of medical data among different medical institutions. It was developed in Japan in 1995. Since version 2.21, MML has used eXtensible Markup Language (XML) as a meta-language. The latest version, 3.0, conforms to HL7 Clinical Document Architecture (CDA) and contains 14 modules and 36 data definition tables. In China, a standard which structures entire medical records in XML does not yet exist. Taking advantage of MML's flexibility, we created a localized Chinese version based on MML 3.0. Parts of the original specifications have been enhanced; these include a newly developed health insurance information module and 12 additional or redefined data definition tables. The Chinese version takes local needs into account and now makes it possible to exchange medical data among Chinese medical institutions.

Integration challenges of clinical information systems developed without a shared data dictionary.

Legacy systems have proven to be long-term integration challenges for Intermountain Health Care (IHC) despite commitment and attention to share clinical information across settings and among clinicians. This study measures the extent of the disparity of data elements across three independent data systems in current use. A sample of relevant data elements was selected across systems covering prenatal, labor and delivery, and newborn intensive care units (NICU). The findings revealed only 17% of these sample data elements had compatible structure across all three systems. The implications from differences in granularity, missing data, and duplicate data entry, include diminished data quality, greater risk for medical error, increased costs of integration and inefficient use of clinician time. Retrospective guidelines for managing conceptual context and granularity are given to assist in designing an integrated longitudinal patient electronic medical record.

The American Cancer Society Cancer Prevention Study II Nutrition Cohort: rationale, study design, and baseline characteristics.

BACKGROUND: Large-scale, prospective cohort studies have played a critical role in discovering factors that contribute to variability in cancer risk in human populations. Epidemiologists and volunteers at the American Cancer Society (ACS) were among the first to establish such cohorts, beginning in the early 1950s and continuing through the present, and these ACS cohorts have made landmark contributions in many areas of epidemiologic research. METHODS AND RESULTS: The Cancer Prevention Study II Nutrition Cohort was established in 1992 and was designed to investigate the relation between diet and other lifestyle factors and exposures and the risk of cancer, mortality, and survival. The cohort includes over 84,000 men and 97,000 women who completed a mailed questionnaire in 1992. New questionnaires are sent to surviving cohort members every other year to update exposure information and to ascertain new occurrences of cancer; a 90% response rate was achieved for follow-up questionnaires in 1997 and 1999. Reported cancers are verified through medical records, registry linkage, or death certificates. The cohort is followed actively for all cases of incident cancer and for all causes of death. Through a collaborative effort among ACS national and division staff, volunteers, and the American College of Surgeons, blood samples were collected from a subgroup of 40,000 cohort members and are in storage at a central repository for future investigation of dietary, hormonal, genetic, and other factors and cancer risk. Collection of DNA samples from buccal cells in an additional 50,000 cohort members is underway currently and will be completed in 2002. CONCLUSIONS: This new cohort of both men and women promises to be particularly valuable for the study of cancer occurrence, mortality, and survival as they relate to obesity and weight change, physical activity at various points in life, vitamin supplement use, exogenous hormone use, other medications (such as aspirin and nonsteroidal anti-inflammatory drugs) and cancer screening modalities.