Creating Excellence in Dementia Care: A Research Review for Ireland's National Dementia Strategy

Examines the prevalence and economic and social costs of dementia; policies, practices, and data on health and social care services in community-based, acute care, and long-term residential settings; and proposed elements for a new strategy

Mapping the National Disability Policy Landscape

This report was undertaken as part of the Moving Ahead project, a research study that aimed to examine the role of factors that contribute to the successful transfer of residents with intellectual disabilities from congregated to community-based living arrangements in two regional areas in Ireland. The study was undertaken by a team of researchers from Ireland and the UK, led by Trinity College Dublin

Seeing and holding baby: Systematic review of clinical management and parental outcomes following stillbirth

Background - In 2009 there were an estimated 2.6 million stillbirths worldwide. In the United States, a 2007 systematic review found little consensus about professional behaviours perceived by parents to be most helpful or most distressing. In the United Kingdom a bereaved parents’ organisation has highlighted discordance between parental views and clinical guidelines that recommend clinicians’ do not encourage parents to see and hold their baby. The objective of this review was to identify and synthesise available research reporting parental outcomes relating to seeing and holding. Method(s) - We undertook a systematic review. We included studies of any design, reporting parental experiences and outcomes. Electronic searches (PubMed, PsychINFO) were conducted in January 2014. Three authors independently screened and assessed the quality of the studies, before abstracting data and undertaking thematic analysis. Results - We reviewed 741 records and included 23 studies (10 quantitative,12 qualitative,1 mixed-method). Twenty-one studies suggested positive outcomes for parents who saw or held their baby. Increased psychological morbidity was associated with current pregnancy, choice not to see their baby, lack of time with their baby and/or insufficient mementos. Three themes were formulated “Positive effects of contact within a traumatic life event”, “Importance of role of health professionals”; and “Impact on Mothers and Fathers: Similarities and differences”. Conclusions - Stillbirth is a risk factor for increased psychological morbidity. Parents’ seeing and holding their stillborn baby can be beneficial to their future wellbeing. Since 2007, there has been a proliferation of studies that challenge clinical guidelines recommending clinicians do not encourage parental contact

Building the Science Foundation of a Modern Food Safety System: Lessons From Denmark, the Netherlands, and the United Kingdom on Creating a More Coordinated and Integrated Approach to Food Safety Information

Examines how food safety reforms in three countries and the European Union affected data collection and analysis, coordination and integrated approaches, and use of data for prevention. Makes recommendations for U.S. programs, policies, and activities

Identifying and appraising promising sources of UK clinical, health and social care data for use by NICE

This report aimed to aid the National Institute of Health and Care Excellence (NICE) in identifying opportunities for greater use of real-world data within its work. NICE identified five key ways in which real-world data was currently informing its work, or could do so in the future through: (i) researching the effectiveness of interventions or practice in real-world (UK) settings (ii) auditing the implementation of guidance (iii) providing information on resource use and evaluating the potential impact of guidance (iv) providing epidemiological information (v) providing information on current practice to inform the development of NICE quality standards. This report took a broad definition of ‘real-world’ data and created a map of UK sources, informed by a number of experts in real-world data, as well as a literature search, to highlight where some of the opportunities may lie for NICE within its clinical, public health and social care remit. The report was commissioned by the NICE, although the findings are likely to be of wider interest to a range of stakeholders interested in the role of real-world data in informing clinical, social care and public health decision-making. Most of the issues raised surrounding the use and appraisal of real-world data are likely to be generic, although the choice of datasets that were profiled in-depth reflected the interests of NICE. We discovered 275 sources that were named as real-world data sources for clinical, social care or public health investigation, 233 of which were deemed as active. The real-world data landscape therefore is highly complex and heterogeneous and composed of sources with different purposes, structures and collection methods. Some real-world data sources are purposefully either set-up or re-developed to enhance their data linkages and to examine the presence/absence/effectiveness of integrated patient care; however, such sources are in the minority. Furthermore, the small number of real-world data sources that are designed to enable the monitoring of care across providers, or at least have the capability to do so at a national level, have been utilised infrequently for this purpose in the literature. Data that offer the capacity to monitor transitions between health and social care do not currently exist at a national level, despite the increasing recognition of the interdependency between these sectors. Among the data sources we included, it was clear that no one data source represented a panacea for NICE’s real world data needs. This does highlight the merits and importance of data linkage projects and is suggestive of a need to triangulate evidence across different data, particularly in order to understand the feasibility and impact of guidance. There exists no overall catalogue or repository of real-world data sources for health, public health and social care, and previous initiatives aimed at creating such a resource have not been maintained. As much as there is a need for enhanced usage of the data, there is also a need for taking stock, integration, standardisation, and quality assurance of different sources. This research highlights a need for a systematic approach to creating an inventory of sources with detailed metadata and the funding to maintain this resource. This would represent an essential first step to support future initiatives aimed at enhancing the use of real-world data

Palliative and End of Life Care for Black, Asian, and Minority Ethnic Groups in the UK

This report marks the start of a programme of work by many partners. A better understanding of the nation's changing demographics, of the needs of individual ethnic and cultural groups and of the types of services which will best meet their end of life care needs must be early outputs from the partnership. There are many areas which researchers will investigate further and many opportunities for service providers to work together with local communities to develop care which is sensitive and responsive to their needs as well as on a scale which will be needed for the large numbers of people who could benefi

Organic Agriculture and Food Utilization

SUMMARY OF FINDINGS 90. Food safety: Many aspects of organic agriculture reduce the risks of pathogens (zoonoses), mycotoxins, bacterial toxins and industrial toxic pollutants, compared to conventional agriculture. However, some other aspects potentially increase them. Reduced resistance to antibiotics in zoonotic pathogens indicates a better prognosis for patients if an infection does occur. For natural plant toxins, the content in plants appears to systematically be 10 to 50 percent higher than in conventional plants. However, this is in a range of concentrations where these compounds have no toxic effect and may even benefit human health. 91. Pesticide poisoning: This is an area where very substantial health problems have been documented, especially among farmers and their families. Pesticide poisoning causes some 20 000 deaths per year globally and an average of 11 days wages lost due to illness, per farmer per incidence, in some areas. Even symptom-free workers often exhibit biomarker changes indicating increased risk of diseases, including Parkinson’s disease. With the present level of knowledge, elimination of such horrible conditions, which can be achieved on a short timescale, is the quantitatively single most important benefit of organic farming in terms of human health. Still, long-term occupational exposure to copper also increases the risk of Parkinson’s disease, but not as much as exposure to synthetic pesticides. 92. Pesticide residues: The levels in organic products are consistently 4 to 5 times lower than in conventional products. However, no definitive causal connection with harm to consumers has ever been demonstrated for food produced in accordance with general (conventional) food safety rules. Errors and accidents can cause contamination with harmful levels of pesticides, but this risk is eliminated when no pesticides are present. Across the different safety risks in both systems, the best managers achieve much better standards than the average producers, and the occurrence of serious hazards is so low that no significant differences have been demonstrated between production systems. 93. Food quality: Consumers generally appreciate that food is authentic and trustworthy and produced with care for them and the environment. So reduced food additives and pesticide residues, good traceability and emphasis on animal welfare all support the perception of organic food as being of high-quality. Differences in taste between organic and conventional food products are strongly affected by interaction with local aspects and therefore show few general trends. Only poultry (broiler) produced according to the organic standards results in a clearly differentiated taste compared with mainstream conventional products. 94. Nutritional adequacy: In developing countries, organic agriculture has several advantages for the provision of nutrients, such as higher Zn/phytate ratio and better amino acid composition in cereals. Also, a more balanced diet due to the greater diversity of organic rotations, including legumes and various types of vegetables, and the need for animals on each farm provide important nutritional benefits. In developed countries, nutritional value is much more difficult to determine. However, the higher levels of plant secondary metabolites and conjugated fatty acids in milk may provide important protection against cardiovascular disease, cancer and other diseases known to be influenced by diet. 95. Human health: Epidemiological studies have shown better health scores among consumers of organic food for immunological characteristics and weight control, and similar benefits have been reproduced in animal studies, supporting a possible causal role of the food production system. 96. Post-harvest operations: Higher activity of plant defense mechanisms in organic plants reduces the losses during transport and storage. The preference for local products and short supply chains also reduce the loss of quality during transport. 97. Pollution of drinking water: Organic farmers have substantially higher economic incentives than conventional farmers to establish and maintain sufficient capacity for collection, composting and incorporation of animal and human wastes as valuable fertilizer. This is particularly important in areas where sanitation is not provided or standards not enforced by the authorities. Such measures will also substantially reduce contamination with nitrates and phosphorus. There is little evidence that these minerals have any harmful effects on humans, if the drinking water is free of pathogens, except by promoting blooms of toxic algae. 98. Pollution of the environment: Persistent pesticides (such as DDT) have damaged wildlife globally and are still being used in many developing countries. Organic agriculture protects the local environment against all types of pesticides and has potential to benefit the global situation if the proportion of land under organic management becomes large enough to reduce the total use. Pollution with nitrate and phosphorus are major causes of eutrophication. Organic farms leach lower levels of phosphorus into drainage water than conventional ones. For nitrate, the loss from organic farms tends to be slightly lower than conventional, except when comparing organic outdoor pig production with conventional indoor production. However, recent data indicate that organically managed soil may be more efficient at denitrification, releasing most of the nitrate into the atmosphere as harmless N2. If this is a general trend, the benefits of organic farming are much larger than previously estimated

Health information systems: international lessons

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 substantial opportunities for Irish IT companies here and abroad

New economic challenges for managing disease prevention and monitoring

Managing disease prevention and monitoring its progression benefits professionals facing the challenge of acquiring new knowledge and information for fighting the many diseases that negatively affect the life of people in areas such as public health systems, families, economic and business systems. From economic and operational points of view, Cancer Registries as organisations managing information by collecting, storing, reporting and interpreting data to improve cancer monitoring which is needed to plan health policies evaluation and design. Sustaining the role of the Cancer Registry as information system for fighting against cancer relies on paying attention on regulatory and ethical aspects with regard to the protection of confidential data, understanding and meeting the organisational challenges, learning from theory and practice emerging from the comparison of international experiences, bringing together voluntary, private initiatives of associations and public programs for sustaining the relevance of gathering and collecting data, information for knowledge about managing prevention and monitoring of the disease as core competence for driving public health systems towards sustainable development. Regulatory and organizational infrastructures help improve both information and knowledge management and design and implement effective measures and initiatives leading to efficacy in preventing and monitoring cancer disease as support to medical scientific research for cancer cure