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At present Ireland lacks really effective and usable health information systems. The priorities listed in the draft 'Information for Action' report cannot be realised within the constraints of the existing systems. Our health information systems are not people centred; they do not facilitate assessment of quality; they make measurement of equity very hard; they do not support an adequate level of democratic or political accountability. The current systems lack credibility with health service staff, at least partly because they seldom see any results from them. There is no adequate system for analysis of and reporting on most of the current Irish health information systems. Despite these problems, components of our systems work well, and produce data of high quality. The Irish Cancer registry provides accurate, timely reports on cancer incidence in Ireland. The National Disease surveillance Centre does excellent work on the collection analysis and dissemination of infectious disease data. The quality of the data collected in the HIPE system by ESRI, and in the Vital Statistics system by the CSO are good. The national disability register works well. It is imperative that the existing systems are not broken in the attempt to bring in new systems. There are many different models in Europe and elsewhere of working health information systems. We would particularly suggest that elements of the systems used in New Zealand, Finland, Scotland and Canada could provide models for further development in Ireland. Specifically, New Zealand has a working model of an e-health Internet; Finland has a good model of a registry based system; Canada has a working model of systems using and analysing health data. Scotland has a very interesting system, with very close integration with primary care. This is a weakness of the Canadian, and especially the Finnish systems. Devising a system based on the best elements of these systems would produce a very powerful tool indeed. It is also worth noting that such a system might lead to ...

Background: This paper describes the impact evaluation of a large big data platform initiative that is being undertaken in order to increase the probability of its success. The initiative, MIDAS (Meaningful Integration of Data Analytics and Services), is a European health-based Horizon 2020 project comprising a consortium of members from various universities, research institutions, and government agencies. Objectives: The purpose of the paper is to present a pioneering platform that will support healthcare policymakers in their decision-making by enabling greater and more efficient use of their data. The goal is to present and evaluate the results of the MIDAS project across four countries. Methods/Approach: The literature is replete with examples of worthwhile technology projects that have failed due to user resistance. In order to avoid such failure, and ensure the success of the final MIDAS platform, a detailed impact evaluation is being undertaken at timed periods of development. Results: This paper describes the impact evaluation process, outlining the use of Q-methodology and the development of a 36-item concourse using the HTMLQ system for that purpose. Conclusions: This research contributes to the overall understanding of how impact evaluation can be undertaken at timed periods during the development of an innovative technology for organisational purposes.

Despite advances in technology and medical science, modern health-based projects are open to systemic failure due to many factors. These include I.T. developer's lack of awareness with regard to end-user needs, poor communication amongst all parties concerned and inappropriate or inadequate tests of the emerging system. Other issues may be external (e.g. political and legal) such as sharing of patient data and issues surrounding consent. The goal of this paper is to take a major health-based European model in current development and explore how it addresses the needs of four institutions in four different countries, and how it will meet their respective needs. The evaluation was designed within a Logic Model, and uses the Framework approach, and Q-Methodology to assess both impact and evaluation. Data will be collected through longitudinal semi-structured interviews and Q-scoring with principal stakeholders and developers at each stage of the project. This approach, recurring interviews with the same key players in the project, will help ensure that there is mutual understanding between I.T. developers and endusers of the system. The final system is meant to provide effective health-based decision support systems for policy makers.

Despite advances in technology and medical science, modern health-based projects are open to systemic failure due to many factors. These include I.T. developer's lack of awareness with regard to end-user needs, poor communication amongst all parties concerned and inappropriate or inadequate tests of the emerging system. Other issues may be external (e.g. political and legal) such as sharing of patient data and issues surrounding consent. The goal of this paper is to take a major health-based European model in current development and explore how it addresses the needs of four institutions in four different countries, and how it will meet their respective needs. The evaluation was designed within a Logic Model, and uses the Framework approach, and Q-Methodology to assess both impact and evaluation. Data will be collected through longitudinal semi-structured interviews and Q-scoring with principal stakeholders and developers at each stage of the project. This approach, recurring interviews with the same key players in the project, will help ensure that there is mutual understanding between I.T. developers and end-users of the system. The final system is meant to provide effective health-based decision support systems for policy makers. This work is licensed under aCreative Commons Attribution-NonCommercial 4.0 International License.

Amidst the global growth of the ageing demographic in the world, an inclusive assessment of the care needs of the older lesbian, gay, bisexual, transgender, and intersex (LGBTI) population is receiving increasing attention, especially in view of reported health inequalities for these minority groups and the position of their sexual orientations and gender identities within a predominantly heteronormative health and social system. This literature review aims to identify and analyse previous research on older LGBTI people's views, experiences, and perceptions of homecare provision. We searched the CINAHL, Medline, and PsychINFO databases and found a total of 337 records. After an eligibility assessment, 12 studies were selected, comprising 11 qualitative studies, and one mixed methods study. Under an overarching theme of fears of discrimination and of receiving suboptimal care, we further categorised our findings in the following three interlinked subthemes: (a) disclosure of gender identity and sexual orientation; (b) emerging meanings of LGBTI‐competent care; and (c) recommendations for improved quality of LGBTI‐friendly services. The overall surfacing outcome of our analysis of the participants' experiences described in the studies examined is an aspiration for homecare services ensuring quality of holistic, person‐centred care that recognises this population's distinct set of requirements, including knowledge and consideration of their histories of inequalities and oppression. Wider awareness about the need to re‐imagine more inclusive care for the LGBTI community has the potential to improve services and practices, reduce access barriers, and prevent inequalities.

We considered two basic questions, 'Is it possible to implement Social Health Insurance in Ireland?', and 'How can this be done?'. Can Social Health Insurance be implemented in Ireland? Our answer is a very definite yes. Furthermore, there would be many opportunities, while working towards this end, to improve the performance of our health care system. How can it be implemented? This process will need to be actively managed. There are many difficulties in the Irish health services, but also many opportunities. The greatest strengths are the talented, well-trained and very committed staff. Getting and keeping the support of these staff, for the necessary changes in service delivery, will be critical. Ireland has the capacity to make these changes, but without high quality management, a detailed focussed plan for change, and political support, little will happen. Each step in the change needs to be planned to maintain services, improve service delivery, improve service accountability, and improve service governance. Each sector of the service will need someone to lead the change, and mind that service during the change. Primary care remains under-developed. The HSE plan to develop primary care teams (PCT) has not succeeded. There are several established PCTs which work well. In other areas there are informal arrangements for collaboration, which work well. Overall, there are many useful lessons to learn from the experience so far. Future developments will need to place general practice at the centre of primary care. The mechanisms for doing this will vary from place to place, but need to be developed urgently. Acute hospitals face a crisis of governance. Maurice Hayes' (1) recent report on Tallaght hospital gives an idea of the scale of the changes needed. Tallaght is, we believe, not atypical, and is reputed to be by no means the worst governed hospital in the system. This, alone, should provide a pressing motive for change. Redesigning Irish hospitals to a new mission of supporting primary care, of supporting ...

OBJECTIVE: This study aimed to determine the prevalence of epilepsy in four European countries (Austria, Denmark, Ireland, and Romania) employing a standard methodology. The study was conducted under the auspices of ESBACE (European Study on the Burden and Care of Epilepsy). METHODS: All hospitals and general practitioners serving a region of at least 50 000 persons in each country were asked to identify patients living in the region who had a diagnosis of epilepsy or experienced a single unprovoked seizure. Medical records were accessed, where available, to complete a standardized case report form. Data were sought on seizure frequency, seizure type, investigations, etiology, comorbidities, and use of antiseizure medication. Cases were validated in each country, and the degree of certainty was graded as definite, probable, or suspect cases. RESULTS: From a total population of 237 757 in the four countries, 1988 (.8%) patients were identified as potential cases of epilepsy. Due to legal and ethical issues in the individual countries, medical records were available for only 1208 patients, and among these, 113 had insufficient clinical information. The remaining 1095 cases were classified as either definite (n = 706, 64.5%), probable (n = 191, 17.4%), suspect (n = 153, 14.0%), or not epilepsy (n = 45, 4.1%). SIGNIFICANCE: Although a precise prevalence estimate could not be generated from these data, the study found a high validity of epilepsy classification among evaluated cases (95.9%). More generally, this study highlights the significant challenges facing epidemiological research methodologies that are reliant on patient consent and retrospective chart review, largely due to the introduction of data protection legislation during the study period. Documentation of the epilepsy diagnosis was, in some cases, relatively low, indicating a need for improved guidelines for assessment, follow-up, and documentation. This study highlights the need to address the concerns and requirements of recruitment sites to engage in epidemiological research.

Objective: This study aimed to determine the prevalence of epilepsy in four European countries (Austria, Denmark, Ireland, and Romania) employing a standard methodology. The study was conducted under the auspices of ESBACE (European Study on the Burden and Care of Epilepsy). Methods: All hospitals and general practitioners serving a region of at least 50 000 persons in each country were asked to identify patients living in the region who had a diagnosis of epilepsy or experienced a single unprovoked seizure. Medical records were accessed, where available, to complete a standardized case report form. Data were sought on seizure frequency, seizure type, investigations, etiology, comorbidities, and use of antiseizure medication. Cases were validated in each country, and the degree of certainty was graded as definite, probable, or suspect cases. Results: From a total population of 237 757 in the four countries, 1988 (.8%) patients were identified as potential cases of epilepsy. Due to legal and ethical issues in the individual countries, medical records were available for only 1208 patients, and among these, 113 had insufficient clinical information. The remaining 1095 cases were classified as either definite (n = 706, 64.5%), probable (n = 191, 17.4%), suspect (n = 153, 14.0%), or not epilepsy (n = 45, 4.1%). Significance: Although a precise prevalence estimate could not be generated from these data, the study found a high validity of epilepsy classification among evaluated cases (95.9%). More generally, this study highlights the significant challenges facing epidemiological research methodologies that are reliant on patient consent and retrospective chart review, largely due to the introduction of data protection legislation during the study period. Documentation of the epilepsy diagnosis was, in some cases, relatively low, indicating a need for improved guidelines for assessment, follow-up, and documentation. This study highlights the need to address the concerns and requirements of recruitment sites to engage in epidemiological research.

One Health (OH) positions health professionals as agents for change and provides a platform to manage determinants of health that are often not comprehensively captured in medicine or public health alone. However, due to the organization of societies and disciplines, and the sectoral allocation of resources, the development of transdisciplinary approaches requires effort and perseverance. Therefore, there is a need to provide evidence on the added value of OH for governments, researchers, funding bodies, and stakeholders. This paper outlines a conceptual framework of what OH approaches can encompass and the added values they can provide. The framework was developed during a workshop conducted by the "Network for Evaluation of One Health," an Action funded by the European Cooperation in Science and Technology. By systematically describing the various aspects of OH, we provide the basis for measuring and monitoring the integration of disciplines, sectors, and stakeholders in health initiatives. The framework identifies the social, economic, and environmental drivers leading to integrated approaches to health and illustrates how these evoke characteristic OH operations, i.e., thinking, planning, and working, and require supporting infrastructures to allow learning, sharing, and systemic organization. It also describes the OH outcomes (i.e., sustainability, health and welfare, interspecies equity and stewardship, effectiveness, and efficiency), which are not possible to obtain through sectoral approaches alone, and their alignment with aspects of sustainable development based on society, environment, and economy.

One Health (OH) positions health professionals as agents for change and provides a platform to manage determinants of health that are often not comprehensively captured in medicine or public health alone. However, due to the organization of societies and disciplines, and the sectoral allocation of resources, the development of transdisciplinary approaches requires effort and perseverance. Therefore, there is a need to provide evidence on the added value of OH for governments, researchers, funding bodies, and stakeholders. This paper outlines a conceptual framework of what OH approaches can encompass and the added values they can provide. The framework was developed during a workshop conducted by the "Network for Evaluation of One Health," an Action funded by the European Cooperation in Science and Technology. By systematically describing the various aspects of OH, we provide the basis for measuring and monitoring the integration of disciplines, sectors, and stakeholders in health initiatives. The framework identifies the social, economic, and environmental drivers leading to integrated approaches to health and illustrates how these evoke characteristic OH operations, i.e., thinking, planning, and working, and require supporting infrastructures to allow learning, sharing, and systemic organization. It also describes the OH outcomes (i.e., sustainability, health and welfare, interspecies equity and stewardship, effectiveness, and efficiency), which are not possible to obtain through sectoral approaches alone, and their alignment with aspects of sustainable development based on society, environment, and economy.

One Health (OH) positions health professionals as agents for change and provides a platform to manage determinants of health that are often not comprehensively captured in medicine or public health alone. However, due to the organization of societies and disciplines, and the sectoral allocation of resources, the development of transdisciplinary approaches requires effort and perseverance. Therefore, there is a need to provide evidence on the added value of OH for governments, researchers, funding bodies, and stakeholders. This paper outlines a conceptual framework of what OH approaches can encompass and the added values they can provide. The framework was developed during a workshop conducted by the "Network for Evaluation of One Health," an Action funded by the European Cooperation in Science and Technology. By systematically describing the various aspects of OH, we provide the basis for measuring and monitoring the integration of disciplines, sectors, and stakeholders in health initiatives. The framework identifies the social, economic, and environmental drivers leading to integrated approaches to health and illustrates how these evoke characteristic OH operations, i.e., thinking, planning, and working, and require supporting infrastructures to allow learning, sharing, and systemic organization. It also describes the OH outcomes (i.e., sustainability, health and welfare, interspecies equity and stewardship, effectiveness, and efficiency), which are not possible to obtain through sectoral approaches alone, and their alignment with aspects of sustainable development based on society, environment, and economy. ; peer-reviewed

Objective: This study aimed to determine the prevalence of epilepsy in four European countries (Austria, Denmark, Ireland, and Romania) employing a standard methodology. The study was conducted under the auspices of ESBACE (European Study on the Burden and Care of Epilepsy). Methods: All hospitals and general practitioners serving a region of at least 50 000 persons in each country were asked to identify patients living in the region who had a diagnosis of epilepsy or experienced a single unprovoked seizure. Medical records were accessed, where available, to complete a standardized case report form. Data were sought on seizure frequency, seizure type, investigations, etiology, comorbidities, and use of antiseizure medication. Cases were validated in each country, and the degree of certainty was graded as definite, probable, or suspect cases. Results: From a total population of 237 757 in the four countries, 1988 (.8%) patients were identified as potential cases of epilepsy. Due to legal and ethical issues in the individual countries, medical records were available for only 1208 patients, and among these, 113 had insufficient clinical information. The remaining 1095 cases were classified as either definite (n = 706, 64.5%), probable (n = 191, 17.4%), suspect (n = 153, 14.0%), or not epilepsy (n = 45, 4.1%). Significance: Although a precise prevalence estimate could not be generated from these data, the study found a high validity of epilepsy classification among evaluated cases (95.9%). More generally, this study highlights the significant challenges facing epidemiological research methodologies that are reliant on patient consent and retrospective chart review, largely due to the introduction of data protection legislation during the study period. Documentation of the epilepsy diagnosis was, in some cases, relatively low, indicating a need for improved guidelines for assessment, follow-up, and documentation. This study highlights the need to address the concerns and requirements of recruitment sites to engage in ...

RICHE was the response to a call under HEALTH-2009-3.3-5, with the title of 'European child health research platform'. The call text asked us to "address the diversity and fragmentation in child health research in Europe in an inclusive multidisciplinary way, identifying existing research programmes in Member States, recent advances and identification of gaps to explore road maps for the future of child health research in Europe". Project structure A consortium, with a final total of 23 partners, and two associate (i.e. unfunded) partners, responded to this call. We designed a project with a linear structure, where the main focus of activity moved from work on the Inventory, and Indicators and Measurement, in Year 1, to work on Gaps in Year 2, finishing with the preparation of the Roadmap in year 3. The final 6 months (Year 4) were largely dissemination. The Platform, which is instantiated in our website, supported all of the other parts,, and was a focus for communication and dissemination throughout the project. Each workpackage focused on a specific area of work, but each fed into its successors, and all leaders and partners worked closely together. Each group produced a number of technical reports and other outputs. The final output was a Roadmap for future investment in European child health research. This has been widely disseminated, and has fed at Commission level and National level into the Horizon 2020 call preparation process. RICHE Roadmap The RICHE Roadmap is based upon a sound, scientific evidence base, which we had gathered as part of our earlier work. The project prepared an inventory of child health research and of measurements and indicators of child health in Europe (WP1 and WP2) . This was collated using a web platform – which can be found at www.childhealthresearch.eu. In addition to this exercise, a formal study of the gaps in child health research was undertaken by carrying out surveys and interviews of researchers and research users across Europe (WP3). This allowed our initial views on ...