Empowerment of patients and communication with health care professionals through an electronic health record

Objective: The aim of this project was to design and develop a personal electronic health record (EHR) in order to support patient empowerment and additionally to enhance their communication and information exchange with health professionals through this EHR. Method: The functionality of a personal Electronic Healthcare Record (EHR) may vary from a simple web-based interface for interactive data entry and data review up to a much more powerful system additionally supporting electronic data/document communication between clinical information systems of primary care practitioners or hospitals and even reminder based support for the empowered citizen, to actively take care of his health, based on relevant disease management programs. It is one means to support patient empowerment, additionally supported by tools for building a patient community. Since storage and communication of data in an EHR comprises sensible personal health data, each of those functions needs specific security and access management requirements to be considered and implemented. Result: Clinical pilot projects are already done or under development.     

Building a robust, scalable and standards-driven infrastructure for secondary use of EHR data: the SHARPn project

The Strategic Health IT Advanced Research Projects (SHARP) Program, established by the Office of the National Coordinator for Health Information Technology in 2010 supports research findings that remove barriers for increased adoption of health IT. The improvements envisioned by the SHARP Area 4 Consortium (SHARPn) will enable the use of the electronic health record (EHR) for secondary purposes, such as care process and outcomes improvement, biomedical research and epidemiologic monitoring of the nation's health. One of the primary informatics problem areas in this endeavor is the standardization of disparate health data from the nation's many health care organizations and providers. The SHARPn team is developing open source services and components to support the ubiquitous exchange, sharing and reuse or 'liquidity' of operational clinical data stored in electronic health records. One year into the design and development of the SHARPn framework, we demonstrated end to end data flow and a prototype SHARPn platform, using thousands of patient electronic records sourced from two large healthcare organizations: Mayo Clinic and Intermountain Healthcare. The platform was deployed to (1) receive source EHR data in several formats, (2) generate structured data from EHR narrative text, and (3) normalize the EHR data using common detailed clinical models and Consolidated Health Informatics standard terminologies, which were (4) accessed by a phenotyping service using normalized data specifications. The architecture of this prototype SHARPn platform is presented. The EHR data throughput demonstration showed success in normalizing native EHR data, both structured and narrative, from two independent organizations and EHR systems. Based on the demonstration, observed challenges for standardization of EHR data for interoperable secondary use are discussed.     

Towards a comprehensive electronic patient record to support an innovative individual care concept for premature infants using the openEHR approach

Purpose

This paper introduces the modelling of a prototype neonatology electronic patient record (EPR) using openEHR archetypes. The EPR is necessary to support the complex communication tasks of the innovative concept of ‘Developmental, Family-Centred, Individual Care of Premature Infants and Newborns’ established for the Department of Neonatology at Heidelberg University Hospital.

Methods

The data to be documented was analysed and modelled using the five step openEHR data modelling approach (odma).

Results

The analysis revealed a total of 1818 items, which could be arranged into 70 clinical concepts. The items and concepts were then mapped to 132 openEHR archetypes. Fifty-eight of these archetypes could be reused either directly or via specialisation from the existing openEHR archetypes. A further 67 archetypes were newly developed. To combine and constrain archetypes for local settings 16 templates were developed.

Conclusion

By using the five step openEHR data modelling approach, semantic interoperability, and a reduced need for repeated documentation of the same data can be realised. This is of major importance within the hospital as well as for trans-institutional data exchange.     

An e-consent-based shared EHR system architecture for integrated healthcare networks

OBJECTIVES: Virtual integration of distributed patient data promises advantages over a consolidated health record, but raises questions mainly about practicability and authorization concepts. Our work aims on specification and development of a virtual shared health record architecture using a patient-centred integration and authorization model. METHODS: A literature survey summarizes considerations of current architectural approaches. Complemented by a methodical analysis in two regional settings, a formal architecture model was specified and implemented. RESULTS: Results presented in this paper are a survey of architectural approaches for shared health records and an architecture model for a virtual shared EHR, which combines a patient-centred integration policy with provider-oriented document management. An electronic consent system assures, that access to the shared record remains under control of the patient. A corresponding system prototype has been developed and is currently being introduced and evaluated in a regional setting. CONCLUSION: The proposed architecture is capable of partly replacing message-based communications. Operating highly available provider repositories for the virtual shared EHR requires advanced technology and probably means additional costs for care providers. Acceptance of the proposed architecture depends on transparently embedding document validation and digital signature into the work processes. The paradigm shift from paper-based messaging to a "pull model" needs further evaluation.     

Rates,levels, and determinants of electronic health record system adoption: A study of hospitals in Riyadh,Saudi Arabia

ObjectiveOutside a small number of OECD countries, little information exists regarding the rates, levels, and determinants of hospital electronic health record (EHR) system adoption. This study examines EHR system adoption in Riyadh, Saudi Arabia.Materials and methodsRespondents from 22 hospitals were surveyed regarding the implementation, maintenance, and improvement phases of EHR system adoption. Thirty-seven items were graded on a three-point scale of preparedness/completion. Measured determinants included hospital size, level of care, ownership, and EHR system development team composition.ResultsEleven of the hospitals had implemented fully functioning EHR systems, eight had systems in progress, and three had not adopted a system. Sixteen different systems were being used across the 19 adopting hospitals. Differential adoption levels were positively related to hospital size and negatively to the level of care (secondary versus tertiary). Hospital ownership (nonprofit versus private) and development team composition showed mixed effects depending on the particular adoption phase being considered.DiscussionAdoption rates compare favourably with those reported from other countries and other districts in Saudi Arabia, but wide variations exist among hospitals in the levels of adoption of individual items. General weaknesses in the implementation phase concern the legacy of paper data systems, including document scanning and data conversion; in the maintenance phase concern updating/maintaining software; and in the improvement phase concern the communication and exchange of health information.ConclusionThis study is the first to investigate the level and determinants of EHR system adoption for public, other nonprofit, and private hospitals in Saudi Arabia. Wide interhospital variations in adoption bear implications for policy-making and funding intervention. Identified areas of weakness require action to increase the degree of adoption and usefulness of EHR systems.     

The impact of patient-generated contextual data on communication in clinical practice: A qualitative assessment of patient and clinician perspectives

BackgroundEffective communication is integral to patient-centered care, yet external pressures can impede the ability to discuss important topics. One strategy to facilitate communication is pre-visit collection and sharing of patient contextual data (PCD), including life circumstances such as their beliefs, needs, and concerns.ObjectiveTo understand how patients and care team members perceive the electronic collection of PCD and its impact on communication in the context of a large academic health system that implemented PatientWisdom, a new technology that elicits PCD from patients and integrates within the electronic health record (EHR).MethodsWe conducted focus groups with patients (n = 26) and semi-structured interviews with primary care team members (n = 20). Qualitative analysis of focus group/interviews included an iterative and reflexive inductive technique to uncover emergent themes.ResultsFour themes were reflected among both patient and care team: (1) the technology enhances the patient’s voice; (2) the technology creates a safe space for patients to share sensitive topics; (3) PCD facilitates rapport not only between patient and provider but the entire care team; (4) PCD aligns patient and clinician goals. Two unique themes emerged among patients: (1) PCD provides opportunity for reflection; (2) PCD humanizes patients in the clinical context. One theme was evident in provider comments: collecting PCD may potentially undermine trust if not reviewed by clinical teams.ConclusionPCD collected directly from patients and available within the EHR was seen by patients and care team members as beneficial to communication. PCD collection supports a paradigm shift towards coproduction of health information and a shared responsibility for information gathering but requires investment from patients and care team to ensure the data are effectively utilized.Practice valuePCD may be useful for team-based care, enabling physicians and non-physician staff to more quickly and responsively connect with patients.     

Requirements for effective academic leadership in Iran: A Nominal Group Technique exercise

Background

United States academic medical centers are increasingly incorporating electronic health records (EHR) into teaching settings. We report third year medical students' attitudes towards clinical learning using the electronic health record in ambulatory primary care clinics.

Methods

In academic year 2005–06, 60 third year students were invited to complete a questionnaire after finishing the required Ambulatory Medicine/Family Medicine clerkship. The authors elicited themes for the questionnaire by asking a focus group of third year students how using the EHR had impacted their learning. Five themes emerged: organization of information, access to online resources, prompts from the EHR, personal performance (charting and presenting), and communication with patients and preceptors. The authors added a sixth theme: impact on student and patient follow-up. The authors created a 21-item questionnaire, based on these themes that used a 5-point Likert scale from "Strongly Agree" to "Strongly Disagree". The authors emailed an electronic survey link to each consenting student immediately following their clerkship experience in Ambulatory Medicine/Family Medicine.

Results

33 of 53 consenting students (62%) returned completed questionnaires. Most students liked the EHR's ability to organize information, with 70% of students responding that essential information was easier to find electronically. Only 36% and 33% of students reported accessing online patient information or clinical guidelines more often when using the EHR than when using paper charts. Most students (72%) reported asking more history questions due to EHR prompts, and 39% ordered more clinical preventive services. Most students (69%) reported that the EHR improved their documentation. 39% of students responded that they received more feedback on their EHR notes compared to paper chart notes. Only 64% of students were satisfied with the doctor-patient communication with the EHR, and 48% stated they spent less time looking at the patient.

Conclusion

Third year medical students reported generally positive attitudes towards using the EHR in the ambulatory setting. They reported receiving more feedback on their electronic charts than on paper charts. However, students reported significant concerns about the potential impact of the EHR on their ability to conduct the doctor-patient encounter.     

A clinical management system for patient participatory health care support. Assuring the patients' rights and confirming operation of clinical treatment and hospital administration

We conducted a drastic change in our hospital information system to support patient participatory health care provided in the New Hiroshima University Hospital (HUH). The new information system in HUH (HU-MIND II-Hiroshima University Hospital Medical Intelligence and Notice Delivery system II) is designed as "clinical management system" (CMS). The core of this CMS is the electronic health record (EHR), which aims to assure both the patients' right to know, and the attendants' accountability. It is evident that the team practice including patients requires close communication. Data in the EHR are written not only by physicians, but also by all coworkers, which will enable them to realize the team communication and the ordering in a reliable way and to leave the evidence of conducted practices. Moreover, the bedside information systems were set-up at all 700 beds. Patients can access their anamnesis and future clinical care procedures themselves. Based on the demand outlined above, the new regulations of HUH are composed of 21 requirements, conditions of information collection, accumulation and use. Our focus was how to make patients' right compatible with attendants' accountability. As the data owners, patients have the facility to access their own data at their bedsides. They can view their own health condition and treatment program and can control the data flow.     

as standard for communicating in a document-based electronic patient record: a 3 years experiment

During the past few years, the eXtensible Markup Language ( ) has progressively become a gold standard for accessing, representing and exchanging information, especially in the health care environment. This paper presents an implementation of the use of for the electronic patient record (EPR) and discusses more specifically its growing use in two areas of the EPR: first, as a format for the exchange of structured messages, and second, as a comprehensible way of representing patient documents. These statements rely on a 3 years experiment conducted at the Geneva University Hospital as part of its document-centered EPR.     

Electronic patient records and the impact of the Internet

The term electronic patient record (EPR) means the electronic collection of clinical narrative and diagnostic reports specific to an individual patient. A true EPR should allow physicians and nurses to practice in a paperless fashion. The wide adoption of Internet technologies should allow truly distributed sharing of patient data across traditional organizational barriers. Hence, the meaning of an EPR, as a representation of documents, should be transformed into a collaborative environment that supports workflow, enables new care models and allows secure access to distributed health data. This paper reviews the current realization of EPRs in the context of paper-based medical records. The Internet architecture that Boston-based medical informatics researchers refer to as W3-EMRS is described in the context of a successful implementation of CareWeb at the Beth Israel Deaconess Medical center. Finally, we describe how this Internet-based approach can be extended beyond the boundaries of traditional care settings to help evolve new collaborative models of eHealth.     

Security of health care records in Belgium. Application in a University Hospital

Access rules to electronic patient records (EPR) have been issued by the Belgian Council of Physicians. Access to identifiable data of the EPR is restricted to anyone responsible for diagnosis, treatment and continuity of care of the patient. By delegation, associated personnel, like secretaries, can also be authorised to have access. A new perspective is given by the availability in 2003 of a national identification card allowing electronic signature of patients. It could not only authorise but also forbid some accesses. A law in 2002 gives right to patients to access to their own record. Health personnel can also be identified by cards but the system is not yet implemented. In the meantime, local measures have been made. We describe practical solutions that have been taken as priorities in a University Hospital. It was felt more important to allow access to lifesaving EPR data than to restrict its access by too strictly theoretical rules. A pilot study (S3 project) is also in progress for interinstitutional communication in Belgium, using the unique identification number of the patient and a "third server".     

XML as standard for communicating in a document-based electronic patient record: a 3 years experiment

During the past few years, the eXtensible Markup Language (XML) has progressively become a gold standard for accessing, representing and exchanging information, especially in the health care environment. This paper presents an implementation of the use of XML for the electronic patient record (EPR) and discusses more specifically its growing use in two areas of the EPR: first, as a format for the exchange of structured messages, and second, as a comprehensible way of representing patient documents. These statements rely on a 3 years experiment conducted at the Geneva University Hospital as part of its document-centered EPR.     

Health care quality management by means of an incident report system and an electronic patient record system

BACKGROUND: Quality management in health care services has not been as successful as in other industries. OBJECTIVE: To assess the potential contribution of an on-line incident reporting system (OIRS) and of an electronic patient record (EPR) system to quality management in hospitals. METHODS: The two approaches are being implemented in Osaka University Hospital. RESULTS: Analysis of the early use of the on-line reporting system indicates that this qualitative approach has been effective to avoid adverse medical events. The quantitative methodology with the EPR is still in the phase of developing. CONCLUSION: Direct data entry by medical staff and an EPR based on dynamic templates and a dynamic problem oriented approach could be useful for building clinical data repositories that can support clinical quality management.     

Electronic health records in complementary and alternative medicine

OBJECTIVES: This paper investigates the potential for a standardised electronic health record (EHR) designed for conventional medicine also to be used by complementary and alternative medicine. METHOD: The research was undertaken using anonymised samples of patient records from homoeopathy practices, to investigate if the patient data could be modelled using the forthcoming joint European and International Standard for EHR Communications (ISO/EN 13606). The research deliberately did not consider the effectiveness of complementary and alternative medicine or the clinical evidence for any particular CAM practice or treatment. The focus was purely on the patient data captured routinely by CAM therapists, to determine whether current approaches to the representation and communication of EHRs could incorporate such records. RESULTS: Five homoeopathic patient records, authored by different practitioners in different practice settings, were re-represented in a structured form in conformance with the ISO/EN 13606 reference Model. A sixth practitioner confirmed that the transposition had been as faithful to the original records as was possible given some limitations in the clarity of the originals. CONCLUSION: The authors conclude that the ISO/EN 13606 model can be used to represent patient records from homoeopathy, including the evidence and reasoning used to arrive at a formulation and to determine the appropriate remedy. It is therefore feasible that future EHR systems adopting this standard could enable patient records to be shared between complementary and conventional medical practice, in support of integrated healthcare.     

Giving patients granular control of personal health information: Using an ethics ‘Points to Consider’ to inform informatics system designers

ObjectiveThere are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this.MethodsWe reviewed existing literature on the ethical and policy issues, developed an ethics framework called a “Points to Consider” (P2C) document, and convened a national expert panel to review and critique the P2C.ResultsWe developed the P2C to aid informaticists designing an advanced query tool for an electronic health record (EHR) system in Indianapolis. The P2C consists of six questions (“Points”) that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care.DiscussionThe P2C is intended to clarify what is at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion.     

Data security and protection in cross-institutional electronic patient records

This paper aims at identifying the specific legal requirements concerning data security and data protection of patient health data that apply to a cross-institutional electronic patient record (EPR) and describes possible solutions for meeting these requirements. In Germany, the legal framework for such records provide that disclosure of patient health information to physicians of third-party institutions is only allowed in case that it is necessary for the joint treatment of the patient, i.e. in case of a “treatment connection”. As a first step, the functionality of a remote-access architecture was proven allowing a one-way connection between the EPR systems of two health institutions in Germany, which jointly treat tumor patients. Besides, a signature system model for ensuring the integrity and authenticity of medical documents was developed and implemented in the existing information system architecture of the University Medical Center of Heidelberg. Especially in Germany, the legal framework for cross-institutional EPRs is very complex and has a considerable influence on the development and implementation of cross-institutional EPRs. However, its introduction is thought to be valuable, since a cross-institutional EPR will improve communication within shared care processes, and thus improve the quality of patient care.     

Advanced and secure architectural EHR approaches

OBJECTIVES: Electronic Health Records (EHRs) provided as a lifelong patient record advance towards core applications of distributed and co-operating health information systems and health networks. For meeting the challenge of scalable, flexible, portable, secure EHR systems, the underlying EHR architecture must be based on the component paradigm and model driven, separating platform-independent and platform-specific models. METHODS: Allowing manageable models, real systems must be decomposed and simplified. The resulting modelling approach has to follow the ISO Reference Model - Open Distributing Processing (RM-ODP). The ISO RM-ODP describes any system component from different perspectives. Platform-independent perspectives contain the enterprise view (business process, policies, scenarios, use cases), the information view (classes and associations) and the computational view (composition and decomposition), whereas platform-specific perspectives concern the engineering view (physical distribution and realisation) and the technology view (implementation details from protocols up to education and training) on system components. Those views have to be established for components reflecting aspects of all domains involved in healthcare environments including administrative, legal, medical, technical, etc. Thus, security-related component models reflecting all view mentioned have to be established for enabling both application and communication security services as integral part of the system's architecture. Beside decomposition and simplification of system regarding the different viewpoint on their components, different levels of systems' granularity can be defined hiding internals or focusing on properties of basic components to form a more complex structure. The resulting models describe both structure and behaviour of component-based systems. RESULTS: The described approach has been deployed in different projects defining EHR systems and their underlying architectural principles. In that context, the Australian GEHR project, the openEHR initiative, the revision of CEN ENV 13606 "Electronic Health Record communication", all based on Archetypes, but also the HL7 version 3 activities are discussed in some detail. The latter include the HL7 RIM, the HL7 Development Framework, the HL7's clinical document architecture (CDA) as well as the set of models from use cases, activity diagrams, sequence diagrams up to Domain Information Models (DMIMs) and their building blocks Common Message Element Types (CMET) Constraining Models to their underlying concepts. CONCLUSION: The future-proof EHR architecture as open, user-centric, user-friendly, flexible, scalable, portable core application in health information systems and health networks has to follow advanced architectural paradigms.     

Development and implementation of an EPR: how to encourage the user.

This paper reports on the role users played in the design and development of an electronic patient record. Two key users participated in the project team. All future users received questionnaires and a selection of them was interviewed. Before starting the development of the EPR, the attitude of users towards electronic record keeping, their satisfaction with the paper clinical records, their knowledge of computers, and their needs and expectations of computer applications in health care were measured by means of a questionnaire. The results of the questionnaire were supplemented with in-depth interviews. Users had a neutral attitude towards electronic record keeping. They were more positive about data entry of the paper records than data retrieval. During the development phase, but prior to the implementation of the EPR, a second questionnaire measured satisfaction with the paper records. Satisfaction appeared to be related to self-rated computer experience. Inexperienced computer users tended to be more positive about the paper records. In general, respondents did not have many expectations about electronic record keeping. A second series of interviews zoomed in on the expectations users had. Except for more concise reporting no beneficial effects of electronic record keeping were expected.     

The need to know the history of the use of digital patient data, in particular the EHR

The purpose of this article is to explore the need for the possibility to reconstruct electronic medical data, in particular the electronic health record (EHR) as they have been or could have been presented to a specified health care professional at a specified moment in the past. The approach taken is that first the need for such functionality is discussed with attention to the differences between electronic records and paper records in this respect. Next the architectural and technical consequences of the implementation of the functionality are considered. The article concludes that such functionality is needed for medical audit, self assessment and handling of complaints. It further concludes that it is far from easy to implement the functionality. If the health care community underwrites the need for such functionality this will have a significant impact on the architecture of medical information systems and the (distributed) EHR. It is recommended that the professional associations and the governments, in collaboration with WHO, take a position on the need to be able to reconstruct the contents of the EHR. IMIA could take the lead in that process.