Comparing approaches for advanced e-health security infrastructures

OBJECTIVES: The healthcare systems of all developed countries face the challenge for improving quality, efficiency and safety of patients' care. For meeting this challenge, health is moving from being organisation-centred to process-based care. This process will continue in the future turning health towards person-centred architectures. This system transformation is combined with extended and advanced communication and collaboration supported and enabled by appropriate information and communication technologies (ICT), also called e-health. The resulting solutions have to be trustworthy. METHODS: There is a set of security services needed for realising trustworthy e-health solutions. Those security services must be comprehensively integrated in the e-health application. Furthermore, a set of infrastructure services has to be specified and implemented. For keeping the solutions future-proof, they have to comply with architectural principles and paradigms. RESULTS: After shortly introducing meanwhile internationally acknowledged architectural paradigms for applications, means and infrastructures providing security services, existing, or specified advanced solutions are described and compared. In that context, the Electronic Health Record as e-health core application has been especially considered. Based on published work as well as on explored solutions, the security services needed are summarised and evaluated. The pros and cons of investigated examples are collected and interpreted. In that context, especially the German health telematics framework architecture and security infrastructure and the corresponding implementable solutions on the one hand and the USA Veterans Health Administration approach to security have been carefully considered. CONCLUSION: Processes and systems are determined by policies, which define and distinguish constraints for communication and collaboration. Therefore, formally modelling policies and performing policy bridging are the main challenges to be met. As result of investigations, recommendations have been derived for establishing the trustworthiness required for any e-health solution at different level from regional to national, European, and even global scale, which are included in the conference summary.     

Access and authorisation in a Glocal e-Health Policy context

Challenges to the development of appropriate yet adaptable policy and tools for security of the individual patient electronic health record (EHR) are proving to be significant. Compounding this is the unique capability of e-health to transgress all existing geo-political and other barriers. Initiatives to develop and advance policy, standards, and tools in relation to EHR access control and authorisation management must address this capability. Currently policy development initiatives take place largely in an isolated manner. This jeopardises the potential of e-health because decisions made in one jurisdiction might hamper, even prevent, an e-health opportunity in another. This paper places access and authorisation issues in an overall policy context through describing current Canadian initiatives. The National Initiative for Telehealth (NIFTE) Guidelines project is developing a framework of national guidelines for telehealth. The Policy and Peer Permission (PPP) project is developing a unique tool that provides persistent protection of data. The new corporate body 'Infoway' is developing a pan-Canadian electronic health record solution. Finally, the Glocal e-Health Policy initiative is developing a tool with which to identify and describe the inter-relationships of e-health issues amongst policy levels, themes, and actors.     

Rethinking Communication in the E-health Era

There is substantial epidemiological evidence that widespread adoption of specific behavior changes can significantly improve population health. Yet, health communication efforts, while well intentioned, have often failed to engage people to change behavior within the complex contexts of their lives. `E-health communication', health promotion efforts that are mediated by computers and other digital technologies, may have great potential to promote desired behavior changes through unique features such as mass customization, interactivity and convenience. There is growing initial evidence that e-health communication can improve behavioral outcomes. However, we have much to learn about whether the technical promise of e-health communication will be effective within the social reality of how diverse people communicate and change in the modern world. This article examines current evidence concerning e-health communication and evaluates opportunities for e-health applications.     

Health informatics in the Asia Pacific region.

Although health informatics has been an established science in some Asia Pacific countries since the 1970s, its current degree of awareness among countries in this region can largely be attributed to the efforts of the Asia Pacific Association for Medical Informatics. These efforts have included the spawning of national health informatics associations in some countries, creating opportunities for cross-country scientific interactions at national health informatics meetings and promoting regional health informatics activities and expertise through the APAMI web site. This presentation gives a review of the current status of health informatics activities among APAMI member countries as well as a cross-section of some of their health informatics projects.     

An open,component-based information infrastructure for integrated health information networks

A fundamental requirement for achieving continuity of care is the seamless sharing of multimedia clinical information. Different technological approaches can be adopted for enabling the communication and sharing of health record segments. In the context of the emerging global information society, the creation of and access to the integrated electronic health record (I-EHR) of a citizen has been assigned high priority in many countries. This requirement is complementary to an overall requirement for the creation of a health information infrastructure (HII) to support the provision of a variety of health telematics and e-health services. In developing a regional or national HII, the components or building blocks that make up the overall information system ought to be defined and an appropriate component architecture specified. This paper discusses current international priorities and trends in developing the HII. It presents technological challenges and alternative approaches towards the creation of an I-EHR, being the aggregation of health data created during all interactions of an individual with the healthcare system. It also presents results from an ongoing Research and Development (R&D) effort towards the implementation of the HII in HYGEIAnet, the regional health information network of Crete, Greece, using a component-based software engineering approach. Critical design decisions and related trade-offs, involved in the process of component specification and development, are also discussed and the current state of development of an I-EHR service is presented. Finally, Human Computer Interaction (HCI) and security issues, which are important for the deployment and use of any I-EHR service, are considered.     

Allergology in Europe,the blueprint

The number of patients with allergic diseases in Europe, and thus relevant demand for health care, is continuously increasing. In this EAACI‐UEMS position paper, a rationale is given for the medical specialty of allergology. General practitioners and general paediatricians usually cannot elucidate and address all causative factors. Throughout Europe, therefore, the expertise of allergologists (allergists) is required. In collaboration with other medical professionals, they take care of allergic patients, in private practices or in specialized public centres. A well‐structured collaboration between allergists and allergy centres offers the possibility of rapid signalling of new trends developing in the population of allergic patients (e.g. in food and drug allergy). Allergy centres also can perform clinical (and basic) research, teach medical students, future allergists and provide postgraduate training. To prevent that the quality of care in one or several countries within Europe lags behind developments in other countries, the UEMS Section and Board on Allergology together with the European Academy of Allergy and Clinical Immunology advocates the status of a full specialty of allergology in each European country, with a further intention to align their activities (blueprint, curriculum and centre visitation) with the UEMS Section of Paediatrics.     

An integrated strategy of knowledge application for optimal e-health implementation: A multi-method study protocol

Background  

E-health is increasingly valued for supporting: 1) access to quality health care services for all citizens; 2) information flow and exchange; 3) integrated health care services and 4) interprofessional collaboration. Nevertheless, several questions remain on the factors allowing an optimal integration of e-health in health care policies, organisations and practices. An evidence-based integrated strategy would maximise the efficacy and efficiency of e-health implementation. However, decisions regarding e-health applications are usually not evidence-based, which can lead to a sub-optimal use of these technologies. This study aims at understanding factors influencing the application of scientific knowledge for an optimal implementation of e-health in the health care system.     

Lessons learned from a distance-based consulting program to assist faculty development projects.

Changes in faculty roles and demographics necessitate a re-examination of the types of professional development opportunities offered in academic institutions. A distance-based consulting program was designed to assist faculty development projects as they progress through all stages of faculty development: needs assessment, project design, implementation, and, in particular, program evaluation and dissemination of results (i.e., presentations and published articles). The progress of 17 faculty development projects in primary care educational sites that received assistance in the United States and Canada was tracked over two years. Three factors were identified as having the most impact on the success of faculty development projects: (1) funds committed to and designated for faculty development; (2) funded, protected time for at least one person to implement the faculty development initiative; and (3) an environment capable of supporting faculty development initiatives (e.g., no major budget shortfall, few faculty transitions, a strong mission, no threat of mergers). Only a few of the participating sites reached the stage of evaluating and publishing articles about the outcomes of their projects within the designated 15-month time frame, with many sites reporting environmental impediments to project success. The authors describe the institutional characteristics that facilitated project success, assess the usefulness of distance-based consulting efforts, and offer recommendations for future distance-based consulting programs. They conclude by noting that the personal touch (i.e., one-on-one contact with consultants) is what is most appreciated, and that excellent one-on-one, in-person assistance may be inherently more effective than even the best-run distance-based consulting.     

Inventory of validation approaches in selected health telematics projects

This paper presents the results from an inventory of validation approaches and methodologies which have been used in selected health telematics projects. The inventory was performed in the VATAM Validation of Telematic Applications in Medicine project, HC1115HC. The purpose of the inventory was to analyse the methodologies and their application assumptions in order to identify possibilities for harmonization and consolidation. The inventory was performed using five validation dimensions: IT-development; quality; user; technology assessment and marketing. The inventory results show that possibilities exist to synthesise methodologies and to provide practical guidance and support for projects that are developing health telematics applications. All stakeholders in health telematics projects, i.e. users, health care decision-makers, developers, suppliers and IT-industries, can benefit from practical validation guidelines and support for validation when guidelines are represented in a usable, easy to access and informative way.     

From theory to 'measurement' in complex interventions: Methodological lessons from the development of an e-health normalisation instrument

ABSTRACT: BACKGROUND: Although empirical and theoretical understanding of processes of implementation in health care is advancing, translation of theory into structured measures that capture the complex interplay between interventions, individuals and context remain limited. This paper aimed to (1) describe the process and outcome of a project to develop a theory-based instrument for measuring implementation processes relating to e-health interventions; and (2) identify key issues and methodological challenges for advancing work in this field. METHODS: A 30-item instrument (Technology Adoption Readiness Scale (TARS)) for measuring normalisation processes in the context of e-health service interventions was developed on the basis on Normalization Process Theory (NPT). NPT focuses on how new practices become routinely embedded within social contexts. The instrument was pre-tested in two health care settings in which e-health (electronic facilitation of healthcare decision-making and practice) was used by health care professionals. RESULTS: The developed instrument was pre-tested in two professional samples (N = 46; N = 231). Ratings of items representing normalisation 'processes' were significantly related to staff members' perceptions of whether or not e-health had become 'routine'. Key methodological challenges are discussed in relation to: translating multi-component theoretical constructs into simple questions; developing and choosing appropriate outcome measures; conducting multiple-stakeholder assessments; instrument and question framing; and more general issues for instrument development in practice contexts. CONCLUSIONS: To develop theory-derived measures of implementation process for progressing research in this field, four key recommendations are made relating to (1) greater attention to underlying theoretical assumptions and extent of translation work required; (2) the need for appropriate but flexible approaches to outcomes measurement; (3) representation of multiple perspectives and collaborative nature of work; and (4) emphasis on generic measurement approaches that can be flexibly tailored to particular contexts of study.     

Assisted reproduction practice in Europe: legal and ethical aspects

This report describes the ethical and legal aspects of assistedreproductive technologies (ART) that have been instituted inEuropean countries. The data were collected from questionnairescirculated to fertility centres in 39 countries in Europe. Ninetysix ART centres were located in 30 of these countries. Ninecountries do not offer ART services. According to the survey,there are approximately 516 centres in Europe, which representapproximately 60% of the world ART centres. The survey includedinformation regarding regulation of ART services, access tothese services, attitude toward genetic material donation, cryopreservationof pre-embryos, surrogacy, manipulation of gametes and pre-embryos,research on pre-embryos and multiple fetal pregnancy reduction.At present, the majority of countries in Europe do not haveestablished legislation pertaining to the various aspects ofART practice. The study reviews the ethical and legal aspectsof ART practice in Europe.     

Comparison of imputation methods for handling missing covariate data when fitting a Cox proportional hazards model: a resampling study

Background

Rates of maternal and perinatal mortality remain high in developing countries despite the existence of effective interventions. Efforts to strengthen evidence-based approaches to improve health in these settings are partly hindered by restricted access to the best available evidence, limited training in evidence-based practice and concerns about the relevance of existing evidence. South East Asia - Optimising Reproductive and Child Health in Developing Countries (SEA-ORCHID) was a five-year project that aimed to determine whether a multifaceted intervention designed to strengthen the capacity for research synthesis, evidence-based care and knowledge implementation improved clinical practice and led to better health outcomes for mothers and babies. This paper describes the development and design of the SEA-ORCHID intervention plan using a logical framework approach.

Methods

SEA-ORCHID used a before-and-after design to evaluate the impact of a multifaceted tailored intervention at nine sites across Thailand, Malaysia, Philippines and Indonesia, supported by three centres in Australia. We used a logical framework approach to systematically prepare and summarise the project plan in a clear and logical way. The development and design of the SEA-ORCHID project was based around the three components of a logical framework (problem analysis, project plan and evaluation strategy).

Results

The SEA-ORCHID logical framework defined the project's goal and purpose (To improve the health of mothers and babies in South East Asia and To improve clinical practice in reproductive health in South East Asia), and outlined a series of project objectives and activities designed to achieve these. The logical framework also established outcome and process measures appropriate to each level of the project plan, and guided project work in each of the participating countries and hospitals.

Conclusions

Development of a logical framework in the SEA-ORCHID project enabled a reasoned, logical approach to the project design that ensured the project activities would achieve the desired outcomes and that the evaluation plan would assess both the process and outcome of the project. The logical framework was also valuable over the course of the project to facilitate communication, assess progress and build a shared understanding of the project activities, purpose and goal.     

GA2LEN (Global Allergy and Asthma European Network) addresses the allergy and asthma 'epidemic'

Allergic diseases represent a major health problem in Europe. They are increasing in prevalence, severity and costs. The Global Allergy and Asthma European Network (GA²LEN), a Sixth EU Framework Program for Research and Technological Development (FP6) Network of Excellence, was created in 2005 as a vehicle to ensure excellence in research bringing together research and clinical institutions to combat fragmentation in the European research area and to tackle Allergy in its globality. The Global Allergy and Asthma European Network has benefited greatly from the voluntary efforts of researchers who are strongly committed to this model of pan-European collaboration. The network was organized in order to increase networking for scientific projects in allergy and asthma around Europe and to make GA²LEN the world leader in the field. Besides these activities, research has also been carried out and the first papers are being published. Achievements of the Global Allergy and Asthma European Network can be grouped as follows: (i) those for a durable infrastructure built up during the project phase, (ii) those which are project-related and based on these novel infrastructures, and (iii) the development and implementation of guidelines. The major achievements of GA²LEN are reported in this paper.     

Optimising reproductive and child health outcomes by building evidence-based research and practice in South East Asia (SEA-ORCHID): study protocol

Background

Disorders related to pregnancy and childbirth are a major health issue in South East Asia. They represent one of the biggest health risk differentials between the developed and developing world. Our broad research question is: Can the health of mothers and babies in Thailand, Indonesia, the Philippines and Malaysia be improved by increasing the local capacity for the synthesis of research, implementation of effective interventions, and identification of gaps in knowledge needing further research?

Methods/Design

The project is a before-after study which planned to benefit from and extend existing regional and international networks. Over five years the project was designed to comprise five phases; pre-study, pre-intervention, intervention, outcome assessment and reporting/dissemination. The study was proposed to be conducted across seven project nodes: four in South East Asia and three in Australia. Each South East Asian study node was planned to be established within an existing department of obstetrics and gynaecology or neonatology and was intended to form the project coordinating centre and focus for evidence-based practice activities within that region. Nine hospitals in South East Asia planned to participate, representing a range of clinical settings. The three project nodes in Australia were intended to provide project support.The intervention was planned to consist of capacity-strengthening activities targeted at three groups: generators of evidence, users of evidence and teachers of evidence. The primary outcome was established as changes in adherence to recommended clinical practices from baseline to completion of the project and impact on health outcomes.

Discussion

The SEA-ORCHID project was intended to improve care during pregnancy and the perinatal period of mothers and their babies in South East Asia. The possible benefits extend beyond this however, as at the end of this project there is hoped to be an existing network of South East Asian researchers and health care providers with the capacity to generalise this model to other health priority areas. It is anticipated that this project facilitate ongoing development of evidence-based practice and policy in South East Asia through attracting long-term funding, expansion into other hospitals and community-based care and the establishment of nodes in other countries.

     

Provision and quality assurance of preimplantation genetic diagnosis in Europe

Preimplantation genetic diagnosis (PGD) is now well established and provided in many European countries. However, regulations, professional standards and accreditation requirements can differ notably. Furthermore, no comprehensive independent data exist either about practice and provision in Europe or about the quality assurance practices and procedures designed to optimize the quality of the results. Consequently, a study was launched to obtain knowledge, currently lacking, of the provision and quality assurance of PGD services and cross-border activities in Europe. An online questionnaire was developed and sent to PGD providers, and expert opinions were obtained through interviews with professionals in specific countries. Information was gathered from 53 centres offering PGD in 17 European countries. There is a diverse array of tests available, with a trend for custom-made services. Although half of the centres have a designated quality manager, just 33% have achieved or are preparing for accreditation or certification. About 66% of the centres responded that they did not participate in external quality assessment, a problem exacerbated by the lack of existing PGD-specific schemes. Approximately 19% of the centres do not keep data on accuracy and 9% do not even follow up until birth. PGD is an expanding activity with an increasing international flow that accounts for approximately one-third of the activity reported. The survey highlights a significant need for improvement in quality assurance in PGD centres. On the positive side, important improvements in the quality management of these services are expected with the European Tissue Directive entering into force.     

Transfusion safety in the Maghreb region

The Maghreb region comprises five countries: Algeria Libya, Morocco, Mauritania, and Tunisia. This is a review aiming at providing an update on the situation of transfusion in the five countries. Three countries have developed regulations covering all transfusion-related activities including policy development. All the countries are running blood safety activities using a National Blood Service as the main entity. Except for Mauritania and Lybia, all the blood safety activities are centralized and conducted regularly. The blood safety indicators are globally better compared to those of sub-Saharan Africa. Despite the efforts of the states of the Maghreb region, and the progress made in the field of transfusion in these countries, shortcomings persist and concern virtually all the key elements of a national blood supply system mainly in the quality management system.     

The pathways to psychiatric care: a cross-cultural study

This paper describes the referral pathways taken by 1554 patients newly referred to the mental health services in 11 countries, and documents factors associated with delays in referral. The pathways in centres relatively well provided with psychiatric staff were dominated by general practitioners and to a lesser extent hospital doctors: the relatively less well resourced centres showed a variety of pathways with native healers often playing an important part. Delays were remarkably short in all centres regardless of psychiatric resources, but in some centres we found longer delays on pathways involving native healers. Somatic problems were a common presentation in all centres, and in some centres there was a tendency for patients presenting with somatic problems to have longer delays than those with symptoms of depression or anxiety. The implications of these findings are discussed in the context of an ongoing programme of WHO research activities aimed at improving the quality of mental illness care available in community settings.     

Developing curriculum in nursing informatics in Europe

The NIGHTINGALE Project (NIGHTINGALE Project: HC1109 DGXIII Contract and Technical Annex, European Commission, December 1995) which started on the 1st of January, 1996, after the approval of the European Commission, has a 36 month duration. It is essential in planning and implementing a strategy in training the nursing profession in using and applying healthcare information systems. NIGHTINGALE contributes towards the appropriate use of the developed telematics infrastructure across Europe by educating and training nurses in a harmonious way across Europe in the upcoming field of nursing informatics. NIGHTINGALE develops courseware material based on the curriculum development process using multimedia technologies. Computer based training software packages in nursing informatics will be the basis of the training material and the corresponding courses. CD-ROM based training and reference material will also be provided in the courses whereas the traditional booklets, teaching material and textbooks can also play an adequate role in training. NIGHTINGALE will disseminate all information and courseware material freely to all interested parties through the publications of the proceedings of the conferences, through the establishment of the world wide web (WWW) server in nursing informatics for Europe (http://www.dn.uoa.gr/nightingale), which will become a depository of nursing information knowledge across Europe as well as a dissemination node of nursing informatics throughout the European members states for the benefit and welfare of the European citizen.     

A bridge to Africa: how health professionals can help in development

US secretary of Health and Human Services Sullivan addresses the issue of the role the US has now and the role it may play in improving health across the African continent. Progress made is attributed to the courageous individual commitment of many dedicated health care problems, and substantial cooperative international efforts. The 1990 US contribution through USAID is 80 million dollars for child survival in Africa and 80 million dollars for voluntary family planning activities. The 1991 figures increased in the total development fund from 560 million dollars to 800 million dollars. AIDS activities receive 11 million dollars out of a total world budget of 52 million dollars. An additional 14 million dollar grant was awarded for a Ugandan effort to fight AIDS and child health care problems and 242,000 dollar grant was given to the Soweto Township AIDS program and AIDS prevention and treatment. The future emphasis was directed to providing a steady, cooperative partnership with African countries, to increasing support for political stability and ending violence, and continuing US policy based on broad based economic growth which fosters sustainable and effective health assistance programs. Support must be provided to assist programs which develop indigenous primary health care systems. Work must be focused on helping Africans learn and practice personal health promotion and disease prevention, which is also of particular significance in breaking the AIDS transmission chain. Increased efforts must address malaria through applied and basic research and malaria control programs. US information technology in the form of, for instance, technical training in epidemiology, disease surveillance, and computer science and data use, needs to be provided to African health professionals. Utilitarian means in international cooperation and relief must be used to foster economic development, democracy, and delivery of health care improvements. The role for health professionals in the US must be to mobilize efforts to share information and expertise with their African counterparts; i.e., through University sponsored meetings and conferences, and private foundation efforts. The reach is with compassion, advanced technology and medical expertise and financial support.     

Medical informatics and bioinformatics: European efforts to facilitate synergy

Over the past decade there have been several attempts to rethink the basic strategies and scope of medical informatics. Meanwhile, bioinformatics has only recently experienced a similar debate about its scientific character. Both disciplines envision the development of novel diagnostic, therapeutic, and management tools, and products for patient care. A combination of the expertise of medical informatics in developing clinical applications and the focused principles that have guided bioinformatics could create a synergy between the two areas of application. Such interaction could have a great influence on future health research and the ultimate goal, namely continuity and individualization of health care. This article summarizes current activities related to facilitating synergy between medical informatics and bioinformatics, emphasizing activities in Europe while relating them to efforts in other parts of the world. The report provides examples of the analysis that European investigators are carrying out, aiming to propose new ideas for collaborations between medical informatics and bioinformatics researchers in a variety of areas.