From the ground up: stakeholders' representations of the Irish longitudinal study on ageing (TILDA).

Healthy ageing, which is the target of life' s later developmental stage, can be achieved through building a wise perspective towards life and existence. However, it may not be achievable for older people when the societal sources are limited. The TILDA project aimed to evaluate the associated factors with healthy ageing and to transfer that knowledge into practice. Hence, determining the perspectives of older people support and advocacy organisations on the enablers and facilitators of the healthy ageing strategies of TILDA is essential to gain a better understanding of the project and plan future strategies. This study aimed to investigate how the TILDA project has influenced or impacted upon these organisations from education, policy, or practice perspectives. The participants (n = 15) included in the study's sample were reached through representative organisations acting to support older people in the Republic of Ireland. Semi-structured interviews were conducted online via Zoom. A systematic thematic data analysis procedure was followed, and three themes emerged from the qualitative data, revealing the perceptions of participants about the TILDA project: (1) Limitations of TILDA, (2) Contributions of TILDA, and (3) Future recommendations for TILDA. In conclusion, among the disadvantages of TILDA, the most significant is not being representative and visible enough; it is evident that it is pivotal to develop a more inclusive culture of TILDA with close cooperation and effective marketing strategies. It is also apparent that TILDA has several advantages that include providing insights into ageing and rich data to plan future support for older people.

Usability of the BigO system in pediatric obesity treatment: A mixed-methods evaluation of clinical end-users.

Objective: To assess technical usability of the BigO app and clinical portal among diverse participants and explore the overall user experiences of both. Methods: Methods included technical usability testing by measuring the relative user efficiency score (RUS) for the app and measuring Relative User Efficiency (RUE) using the 'think aloud' method with the clinical portal. Qualitative approaches involved focus groups with adolescent app users and semi-structured one-to-one interviews with clinician participants. Thematic analysis was applied to analyze qualitative data. Participants: Clinical participants consisted of adolescents seeking treatment for severe obesity and were invited via telephone/face to face to attend technical usability testing and a focus group. Healthcare professionals (HCPs) and researchers using the BigO clinical portal interface were invited to participate in usability testing and semi-structured interviews. Results: From 14 families invited to attend, seven consented to join the study and four adolescents (mean age=13.8 (SD 0.8) years) participated. Additionally, six HCPs and one pediatric obesity researcher took part. RUS for adolescents indicated that the tasks required of them via myBigO app were feasible, and technically efficient. No user-related errors were observed during tasks. Technical barriers reported by adolescents included notifications of battery optimization, misunderstanding image annotation language, and compatibility challenges with certain phone models. RUS for the HCPs and researcher indicated that basic technical skills are a potential barrier for clinical portal use and qualitative findings revealed that clinical users wanted a logging option for monitoring goals and providing feedback on the portal. Conclusion: Our study provided valuable formative findings from clinical end-users in Ireland indicating that adolescents being treated for obesity rated myBigO app as usable, acceptable and that it may assist other key stakeholders to understand food marketing and to monitor dietary and physical activity behaviors. Several key suggestions for future iterations of the clinical portal were provided to enhance its value in pediatric obesity treatment.

Health literacy, governance and systems leadership contribute to the implementation of the One Health approach: a virtuous circle.

One Health is an important approach to addressing health threats and promoting health through interdisciplinary health, policy, legislation and leadership research to achieve better human and animal health and better outcomes for the planet. The Covid-19 pandemic has triggered an urgent awareness of the need to develop innovative integrative solutions to address root causes of such threats to health, which requires collaboration across disciplines and amongst different sectors and communities. We explore how achieving the Quadripartite Organizations' One Health Joint Plan of Action can be supported by the concepts of 'One Health literacy' and 'One Health governance' and promote both academic and policy dialogue. We show how One Health literacy and One Health governance influence and reinforce each other, while an interdisciplinary systems leadership approach acts as a catalyst and mechanism for understanding and enacting change. Based on our understanding of how these elements influence the implementation of the One Health approach, we describe a model for considering how external triggering events such as the Covid-19 pandemic may prompt a virtuous circle whereby exposure to and exploration of One Health issues may lead to improved One Health literacy and to better governance. We close with recommendations to international organisations, national governments and to leaders in policy, research and practice to enhance their influence on society, the planetary environment, health and well-being.

'Ageing well': Discursive constructions of ageing and health in the public reach of a national longitudinal study on ageing.

Established in 2006, the Irish Longitudinal Study on Ageing (TILDA) investigates the health, economic and social circumstances of a nationally-representative sample of people aged fifty years and older in a series of biennial data collection waves. Irish newspapers have been reporting the results of TILDA for over a decade and a half, and their texts represent reports of scientific research distilled through the pen of journalists. In their totality, their texts constitute a public discourse on ageing and health. Using critical discourse analysis, we examined the discourse within the texts of a purposive sample of two national daily newspapers. As sites of public discourse, newspapers reflect social life and are influential in forming and legitimating public attitudes. Like other sites of discourse, their language-in-use is contextually located, is rarely neutral and may employ strategies to discursively construct, sustain and privilege particular social identities, including ageing identities. Discursively constructed as 'ageing well', our analysis of newspaper texts revealed a discernible meta-discourse on ageing and health in which ageing was framed as a life course stage that may be cultivated, diligently self-nurtured and exploited for its positive aspects. When considered in light of literature on health and social inequalities, the consequences of this broadly positive ageing discourse can, somewhat perversely, frame older adults in unintended negative ways, including homogenising them and attributing to them capacities for ageing well that they may not possess. Discursively constructing older adults as a social and economic resource can also impose unrealistic expectations on them and may legitimise exploitation and demonstrate how normative ideologies of ageism and ableism are conveyed through legitimising language. Despite these potentially unintended consequences, the available media resources associated with TILDA may represent one of the most important contributions of the study, in terms of informing positive public attitudes towards ageing.

Reformulation of Processed Yogurt and Breakfast Cereals over Time: A Scoping Review.

Poor diet is responsible for a quarter of European non-communicable disease (NCD)-related deaths. The reformulation of sugar, salt, and saturated fat in processed packaged foods offers an opportunity to reduce consumption of nutrients of concern and also support a reduction in energy intake. To date, there have been no publications measuring progress in food reformulation by compiling published evidence for a food category. The aim of this scoping review was to identify, characterize and summarise the findings of studies analysing the reformulation of processed yogurt and breakfast cereals. The review answered the research question: "What is the impact of food reformulation on the nutrient quality of yogurt and breakfast cereals available in the retail environment?" The research protocol was defined based on PRISMA-ScR guidelines. Five databases were searched in May 2022. Thirteen studies, published between 2010 and 2021 and completed across seven countries were eligible for inclusion. There were sufficient eligible studies to identify trends in sodium, salt, and sugar reduction in breakfast cereals. However, there was minimal or no reduction in energy, which may bring into question the use of food reformulation as part of an overall health strategy for obesity reduction.

Toward Systems Models for Obesity Prevention: A Big Role for Big Data.

The relation among the various causal factors of obesity is not well understood, and there remains a lack of viable data to advance integrated, systems models of its etiology. The collection of big data has begun to allow the exploration of causal associations between behavior, built environment, and obesity-relevant health outcomes. Here, the traditional epidemiologic and emerging big data approaches used in obesity research are compared, describing the research questions, needs, and outcomes of 3 broad research domains: eating behavior, social food environments, and the built environment. Taking tangible steps at the intersection of these domains, the recent European Union project "BigO: Big data against childhood obesity" used a mobile health tool to link objective measurements of health, physical activity, and the built environment. BigO provided learning on the limitations of big data, such as privacy concerns, study sampling, and the balancing of epidemiologic domain expertise with the required technical expertise. Adopting big data approaches will facilitate the exploitation of data concerning obesity-relevant behaviors of a greater variety, which are also processed at speed, facilitated by mobile-based data collection and monitoring systems, citizen science, and artificial intelligence. These approaches will allow the field to expand from causal inference to more complex, systems-level predictive models, stimulating ambitious and effective policy interventions.

Understanding the cost of care of type 2 diabetes mellitus - a value measurement perspective.

OBJECTIVES: We explore the cost of care of type 2 diabetes mellitus (T2DM) using time-driven activity-based costing (TDABC) and connect that cost to resulting patient health outcomes. DESIGN: We construct six care pathways varying from low-risk to high-risk patients over a 12-month cycle of care. We collect time, resource and cost data on activities in each care pathway and compute a time-driven estimate of cost. Use of patient outcome data highlights the health outcomes achieved. SETTING: Primary, secondary and tertiary care. PARTICIPANTS: Medical staff involved in the care of patients with T2DM. PRIMARY AND SECONDARY MEASURES: Primary: resources consumed to provide T2DM care. Secondary: health outcomes for representative patient within each patient category. RESULTS: By computing cost of T2DM care and associated complications of chronic kidney disease, active foot disease, moderate risk of active foot disease and myocardial infarction, we show that when patients develop acute complications, significant costs are incurred, as compared with the cost of maintaining a patient at low or moderate risk. Variance analysis further informs decision making by showing the need to have the right personnel doing the right tasks at the right time to control costs. CONCLUSIONS: A TDABC approach facilitates an understanding of the drivers of cost in chronic illness care. Our paper highlights the stages in the care pathway where different settings, decision making and a more optimal use of resources could assist with achievement of better patient outcomes.

"Data is the new oil": citizen science and informed consent in an era of researchers handling of an economically valuable resource.

As with other areas of the social world, academic research in the contemporary healthcare setting has undergone adaptation and change. For example, research methods are increasingly incorporating citizen participation in the research process, and there has been an increase in collaborative research that brings academic and industry partners together. There have been numerous positive outcomes associated with both of these growing methodological and collaborative processes; nonetheless, both bring with them ethical considerations that require careful thought and attention. This paper addresses the ethical considerations that research teams must consider when using participatory methods and/or when working with industry and outlines a novel informed consent matrix designed to maintain the high ethical standard to which academic research in the healthcare arena has traditionally adhered.

Exploring Associations Between Children's Obesogenic Behaviors and the Local Environment Using Big Data: Development and Evaluation of the Obesity Prevention Dashboard.

BACKGROUND: Obesity is a major public health problem globally and in Europe. The prevalence of childhood obesity is also soaring. Several parameters of the living environment are contributing to this increase, such as the density of fast food retailers, and thus, preventive health policies against childhood obesity must focus on the environment to which children are exposed. Currently, there are no systems in place to objectively measure the effect of living environment parameters on obesogenic behaviors and obesity. The H2020 project "BigO: Big Data Against Childhood Obesity" aims to tackle childhood obesity by creating new sources of evidence based on big data. OBJECTIVE: This paper introduces the Obesity Prevention dashboard (OPdashboard), implemented in the context of BigO, which offers an interactive data platform for the exploration of objective obesity-related behaviors and local environments based on the data recorded using the BigO mHealth (mobile health) app. METHODS: The OPdashboard, which can be accessed on the web, allows for (1) the real-time monitoring of children's obesogenic behaviors in a city area, (2) the extraction of associations between these behaviors and the local environment, and (3) the evaluation of interventions over time. More than 3700 children from 33 schools and 2 clinics in 5 European cities have been monitored using a custom-made mobile app created to extract behavioral patterns by capturing accelerometer and geolocation data. Online databases were assessed in order to obtain a description of the environment. The dashboard's functionality was evaluated during a focus group discussion with public health experts. RESULTS: The preliminary association outcomes in 2 European cities, namely Thessaloniki, Greece, and Stockholm, Sweden, indicated a correlation between children's eating and physical activity behaviors and the availability of food-related places or sports facilities close to schools. In addition, the OPdashboard was used to assess changes to children's physical activity levels as a result of the health policies implemented to decelerate the COVID-19 outbreak. The preliminary outcomes of the analysis revealed that in urban areas the decrease in physical activity was statistically significant, while a slight increase was observed in the suburbs. These findings indicate the importance of the availability of open spaces for behavioral change in children. Discussions with public health experts outlined the dashboard's potential to aid in a better understanding of the interplay between children's obesogenic behaviors and the environment, and improvements were suggested. CONCLUSIONS: Our analyses serve as an initial investigation using the OPdashboard. Additional factors must be incorporated in order to optimize its use and obtain a clearer understanding of the results. The unique big data that are available through the OPdashboard can lead to the implementation of models that are able to predict population behavior. The OPdashboard can be considered as a tool that will increase our understanding of the underlying factors in childhood obesity and inform the design of regional interventions both for prevention and treatment.

To Adapt or Not to Adapt: The Association between Implementation Fidelity and the Effectiveness of Diabetes Self-Management Education.

Self-management education (SME) is a key determinant of diabetes treatment outcomes. While SME programs are often adapted for implementation, the impact of adaptations on diabetes SME effectiveness is not well documented. This study evaluated the impact of the implementation fidelity of diabetes SME programs on program effectiveness, exploring which factors influence implementation fidelity. Data from 33 type 2 diabetes SME program providers and 166 patients were collected in 8 countries (Austria, Belgium, Germany, Ireland, UK, Israel, Taiwan and USA). Program providers completed a questionnaire assessing their adherence to the program protocol and factors that influenced the implementation. Patients answered a pre-post questionnaire assessing their diabetes-related health literacy, self-care behavior, general health and well-being. Associations between implementation fidelity and outcomes were estimated through logistic regressions and repeated measures MANOVA, controlling for potential confounders. Adaptations of the program protocol regarding content, duration, frequency and/or coverage were reported by 39% of the providers and were associated with better, not worse, outcomes than strict adherence. None of the factors related to the participants, facilitating strategies, provider or context systematically influenced the implementation fidelity. Future research should focus on individual and contextual factors that may influence decisions to adapt SME programs for diabetes.

Establishing consensus on key public health indicators for the monitoring and evaluating childhood obesity interventions: a Delphi panel study.

BACKGROUND: Childhood obesity is influenced by myriad individual, societal and environmental factors that are not typically reflected in current interventions. Socio-ecological conditions evolve and require ongoing monitoring in terms of assessing their influence on child health. The aim of this study was to identify and prioritise indicators deemed relevant by public health authorities for monitoring and evaluating childhood obesity interventions. METHOD: A three-round Delphi Panel composed of experts from regions across Europe, with a remit in childhood obesity intervention, were asked to identify indicators that were a priority in their efforts to address childhood obesity in their respective jurisdictions. In Round 1, 16 panellists answered a series of open-ended questions to identify the most relevant indicators concerning the evaluation and subsequent monitoring of interventions addressing childhood obesity, focusing on three main domains: built environments, dietary environments, and health inequalities. In Rounds 2 and 3, panellists rated the importance of each of the identified indicators within these domains, and the responses were then analysed quantitatively. RESULTS: Twenty-seven expert panellists were invited to participate in the study. Of these, 16/27 completed round 1 (5 9% response rate), 14/16 completed round 2 (87.5% response rate), and 8/14 completed the third and final round (57% response rate). Consensus (defined as > 70% agreement) was reached on a total of 45 of the 87 indicators (49%) across three primary domains (built and dietary environments and health inequalities), with 100% consensus reached for 5 of these indicators (6%). CONCLUSION: Forty-five potential indicators were identified, pertaining primarily to the dietary environment, built environment and health inequalities. These results have important implications more widely for evaluating interventions aimed at childhood obesity reduction and prevention.

BigO: A public health decision support system for measuring obesogenic behaviors of children in relation to their local environment.

Obesity is a complex disease and its prevalence depends on multiple factors related to the local socioeconomic, cultural and urban context of individuals. Many obesity prevention strategies and policies, however, are horizontal measures that do not depend on context-specific evidence. In this paper we present an overview of BigO (http://bigoprogram.eu), a system designed to collect objective behavioral data from children and adolescent populations as well as their environment in order to support public health authorities in formulating effective, context-specific policies and interventions addressing childhood obesity. We present an overview of the data acquisition, indicator extraction, data exploration and analysis components of the BigO system, as well as an account of its preliminary pilot application in 33 schools and 2 clinics in four European countries, involving over 4,200 participants.

Increasing Health Literacy May Reduce Health Inequalities: Evidence from a National Population Survey in Ireland.

Background. Health literacy has been separately associated with socio-economic status and worse health status and outcomes. However, the magnitude of the associations between health literacy and health status and outcomes may not be evenly distributed across society. This study aims to estimate and compare the associations between health status, health behaviours, and healthcare utilisation within different levels of social status in the Irish population. Materials and methods. Data from Ireland collected as part of the 2011 European Health Literacy Survey were analysed. General health literacy was measured on a 0-50 scale, low to high. There were four binary outcomes: long-standing health conditions, smoking, hospital visits in the last 12 months, and self-rated health status. Logistic regression analysis was conducted to estimate the likelihood of each health outcome. Health literacy was treated as the main independent variable. Marginal effects were calculated using the delta method to demonstrate the change in likelihood of each outcome associated with a 5-point increase in health literacy score. The sample was grouped into tertiles based on self-reported social status, and models were replicated and compared for each tertile. Models were adjusted for known correlates of health literacy and health: age, gender, and education. Analysis was conducted using Stata V14. Results. Higher health literacy scores were associated with a lower probability of having a limiting illness within the low social status group only. Higher health literacy scores were associated with a lower probability of three or more hospital visits in the past 12 months in the low and middle social status groups. For people in the low and middle social status groups, higher health literacy levels were associated with a lower probability of being a current smoker. The associations between health literacy and self-rated health status were similar in each social status group. Conclusions: Improvement in population health literacy may reduce the prevalence of long-term chronic health conditions, reduce smoking levels, and result in fewer hospital visits. Whilst improved health literacy should improve behaviours and outcomes in all groups, it should have a more marked impact in lower social status groups, and hence contribute to reducing the observed social disparities in these health outcomes.

Mobile Health Apps in Pediatric Obesity Treatment: Process Outcomes From a Feasibility Study of a Multicomponent Intervention.

BACKGROUND: Multicomponent family interventions underline current best practice in childhood obesity treatment. Mobile health (mHealth) adjuncts that address eating and physical activity behaviors have shown promise in clinical studies. OBJECTIVE: This study aimed to describe process methods for applying an mHealth intervention to reduce the rate of eating and monitor physical activity among children with obesity. METHODS: The study protocol was designed to incorporate 2 mHealth apps as an adjunct to usual care treatment for obesity. Children and adolescents (aged 9-16 years) with obesity (BMI ≥98th centile) were recruited in person from a weight management service at a tertiary health care center in the Republic of Ireland. Eligible participants and their parents received information leaflets, and informed consent and assent were signed. Participants completed 2 weeks of baseline testing, including behavioral and quality of life questionnaires, anthropometry, rate of eating by Mandolean, and physical activity level using a smart watch and the myBigO smartphone app. Thereafter, participants were randomized to the (1) intervention (usual clinical care+Mandolean training to reduce the rate of eating) or (2) control (usual clinical care) groups. Gender and age group (9.0-12.9 years and 13.0-16.9 years) stratifications were applied. At the end of a 4-week treatment period, participants repeated the 2-week testing period. Process evaluation measures included recruitment, study retention, fidelity parameters, acceptability, and user satisfaction. RESULTS: A total of 20 participants were enrolled in the study. A web-based randomization system assigned 8 participants to the intervention group and 12 participants to the control group. Attrition rates were higher among the participants in the intervention group (5/8, 63%) than those in the control group (3/12, 25%). Intervention participants undertook a median of 1.0 training meal using Mandolean (25th centile 0, 75th centile 9.3), which represented 19.2% of planned intervention exposure. Only 50% (9/18) of participants with smart watches logged physical activity data. Significant differences in psychosocial profile were observed at baseline between the groups. The Child Behavior Checklist (CBCL) mean total score was 71.7 (SD 3.1) in the intervention group vs 57.6 (SD 6.6) in the control group, t-test P<.001, and also different among those who completed the planned protocol compared with those who withdrew early (CBCL mean total score 59.0, SD 9.3, vs 67.9, SD 5.6, respectively; t-test P=.04). CONCLUSIONS: A high early attrition rate was a key barrier to full study implementation. Perceived task burden in combination with behavioral issues may have contributed to attrition. Low exposure to the experimental intervention was explained by poor acceptability of Mandolean as a home-based tool for treatment. Self-monitoring using myBigO and the smartwatch was acceptable among this cohort. Further technical and usability studies are needed to improve adherence in our patient group in the tertiary setting.

Associations between health literacy and patient outcomes in adolescents and young adults with cystic fibrosis.

BACKGROUND: Interactive health literacy (HL) skills enable individuals to participate more fully in healthcare activities and play a role in improving their outcomes. We examine the associations between HL and cystic fibrosis (CF) outcomes and compare HL in a sample from both the Irish CF and general populations. METHODS: A total of251 CF Registry participants aged 13-30 years completed the HLS-EU-Q16 survey and a disease-specific instrument for measuring quality of life (QoL) in CF. Health outcome and healthcare resource utilization (HCRU) data were sourced from the registry. CF patient outcomes were examined using generalized linear models (GLMs) with interactive HL categorization included as a factor. General population interactive HL data are from the 2011 European HL Survey (HLS-EU). Interactive HL in 180 age-sex matched CF and general population individuals was examined using a GLM with study population, sex and educational level included as factors and age as a covariate. RESULTS: Sufficient interactive HL (total sum score ≥13) was self-reported by 81.7% of individuals with CF. Sufficient HL was associated with fewer outpatient visits [7.02(SD = 6.7: 7.4) vs. 8.74(SD = 7.9: 9.6), P < 0.001], days hospitalized [10.25(SD = 9.8: 10.7) vs. 12.8(SD = 11.8: 13.9), P < 0.001], days on intravenous antibiotics [15.3(SD = 14.7: 15.8) vs. 19.7(18.5: 21.1), P < 0.001], days on oral antibiotics [27.4(SD = 26.7: 28.1) vs. 48.48(38.7: 42.4), P < 0.001] and better QoL [77.1(SD = 75.4-78.9) vs. 64.6(60.8-68.3), P < 0.001]. Mean HL scores in CF and general populations were sufficient, although higher among individuals with CF (14.3 vs. 13.1, P < 0.01). CONCLUSION: CF adolescents and young adults with sufficient levels of HL to obtain, understand, appraise and apply health information have better health-related outcomes.

Clinical handover practices among healthcare practitioners in acute care services: A qualitative study.

AIMS AND OBJECTIVES: To examine clinical handover practices in acute care services in Ireland. Objectives were to examine clinical handover practices between and within teams and between shifts, to identify resources and supports to enhance handover effectiveness and to identify barriers and facilitators of effective handover. BACKGROUND: Clinical handover is a high-risk activity, and ineffective handover practice constitutes a risk to patient safety. Evidence suggests that handover effectiveness is achieved through staff training and standardised handover protocols. DESIGN: The study design was qualitative-descriptive using inductive analysis. METHODS: The study involved a series of focus group discussions and interviews among a sample of healthcare practitioners recruited from 12 urban and regional acute hospitals in Ireland. A total of 116 healthcare professionals took part in 28 interviews and 13 focus group discussions. We analysed the data using the directed content analysis method. RESULTS: Data collection generated rich qualitative data, yielding five categories from which two broad themes emerged: "policy and practice" and "handover effectiveness." The themes and their associated categories indicate that there is limited organisational-level policy and limited explicit training in clinical handover, that medical and nursing handovers are separate activities with somewhat different purposes and different modes of execution, and that several factors in the acute care setting, including location, timing and documentation, act as either barriers or enablers to handover effectiveness. CONCLUSION: The evidence in the current study suggests that clinical handover merits increased level of prominence in hospital policies or operating procedures. Medical and nursing handover practices represent distinct activities in their content and execution that may be related to cultural and organisational factors. RELEVANCE TO CLINICAL PRACTICE: Achieving multidisciplinary team handover requires a change in embedded traditional practices. Several aspects of the clinical handover activities of nursing and medical staff appear to diverge from best-practice evidence.

Implementing a National Electronic Referral Program: Qualitative Study.

BACKGROUND: Electronic referrals or e-referrals can be defined as the electronic transmission of patient data and clinical requests between health service providers. National electronic referral systems have proved challenging to implement due to problems of fit between the technical systems proposed and the existing sociotechnical systems. In seeming contradiction to a sociotechnical approach, the Irish Health Service Executive initiated an incremental implementation of a National Electronic Referral Programme (NERP), with step 1 including only the technical capability for general practitioners to submit electronic referral requests to hospital outpatient departments. The technology component of the program was specified, but any changes required to embed that technology in the existing sociotechnical system were not specified. OBJECTIVE: This study aimed to theoretically frame the lessons learned from the NERP step 1 on the design and implementation of a national health information technology program. METHODS: A case study design was employed, using qualitative interviews with key stakeholders of the NERP step 1 (N=41). A theory-driven thematic analysis of the interview data was conducted, using Barker et al's Framework for Going to Full Scale. RESULTS: The NERP step 1 was broadly welcomed by key stakeholders as the first step in the implementation of electronic referrals-delivering improvements in the speed, completeness of demographic information, and legibility and traceability of referral requests. National leadership and digitalized health records in general practice were critical enabling factors. Inhibiting factors included policy uncertainty about the future organizational structures within which electronic referrals would be implemented; the need to establish a central referral office consistent with these organizational structures; outstanding interoperability issues between the electronic referral solution and hospital patient administration systems; and an anticipated need to develop specialist referral templates for some specialties. A lack of specification of the sociotechnical elements of the NERP step 1 inhibited the necessary testing and refinement of the change package used to implement the program. CONCLUSIONS: The key strengths of the NERP step 1 are patient safety benefits. The NERP was progressed beyond the pilot stage despite limited resources and outstanding interoperability issues. In addition, a new electronic health unit in Ireland (eHealth Ireland) gained credibility in delivering national health information technology programs. Limitations of the program are its poor integration in the wider policy and quality improvement agenda of the Health Service Executive. The lack of specification of the sociotechnical elements of the program created challenges in communicating the program scope to key stakeholders and restricted the ability of program managers and implementers to test and refine the change package. This study concludes that while the sociotechnical elements of a national health information technology program do not need to be specified in tandem with technical elements, they do need to be specified early in the implementation process so that the change package used to implement the program can be tested and refined.

State of Diabetes Self-Management Education in the European Union Member States and Non-EU Countries: The Diabetes Literacy Project.

BACKGROUND: Diabetes self-management education (DSME) is considered essential for improving the prevention and care of diabetes through empowering patients to increase agency in their own health and care processes. However, existing evidence regarding DSME in the EU Member States (EU MS) is insufficient to develop an EU-wide strategy. OBJECTIVES: This study presents the state of DSME in the 28 EU MS and contrasts it with 3 non-EU countries with comparable Human Development Index score: Israel, Taiwan, and the USA (ITU). Because type 2 diabetes mellitus (T2DM) disproportionately affects minority and low-income groups, we paid particular attention to health literacy aspects of DSME for vulnerable populations. METHODS: Data from multiple stakeholders involved in diabetes care were collected from Feb 2014 to Jan 2015 using an online Diabetes Literacy Survey (DLS). Of the 379 respondents (249 from EU MS and 130 from ITU), most were people with diabetes (33% in the EU MS, 15% in ITU) and care providers (47% and 72%). These data were supplemented by an expert survey (ES) administered to 30 key informants. RESULTS: Access to DSME varies greatly in the EU MS: an average of 29% (range 21% to 50%) of respondents report DSME programs are tailored for people with limited literacy, educational attainment, and language skills versus 63% in ITU. More than half of adult T2DM patients and children/adolescents participate in DSME in EU MS; in ITU, participation of T1DM patients and older people is lower. Prioritization of DSME (6.1 ± 2.8 out of 10) and the level of satisfaction with the current state of DSME (5.0 ± 2.4 out of 10) in the EU MS were comparable with ITU. CONCLUSION: Variation in availability and organization of DSME in the EU MS presents a clear rationale for developing an EU-wide diabetes strategy to improve treatment and care for people with diabetes.

Estimating Direct Cost of Cystic Fibrosis Care Using Irish Registry Healthcare Resource Utilisation Data, 2008-2012.

BACKGROUND: Understanding the determinants of cost of cystic fibrosis (CF) care and health outcomes may be useful for financial planning for the delivery of CF services. Registries contain information otherwise unavailable to healthcare activity/cost monitoring systems. We estimated the direct medical cost of CF care using registry data and examined how cost was affected by patient characteristics and CF gene (CF Transmembrane Conductance Regulator [CFTR]) mutation. METHODS: Healthcare resource utilisation data (2008-2012) were obtained for CF patients enrolled with the Irish CF Registry by 2013 from linked registry and national hospitalisation database records. Mean annual hospitalisation and medication per-patient costs were estimated by demographic profile, CFTR mutation, clinical status, and CF co-morbidity, and were presented in 2014 euro values. A mixed-effects regression model was used to examine the effect of demographic, CFTR mutation, and clinical outcomes on the log10 cost of direct medical CF care. RESULTS: Using 4261 observations from 1100 patients, we found that the median annual total cost per patient increased over the period 2008-2012 from €12,659 to €16,852, inpatient bed-day cost increased from €14,026 to €17,332, and medication cost increased from €5863 to €12,467. Homozygous F508-CFTR mutation (class II) cost was highest and milder mutation (class IV/V) cost was 49% lower. Baseline estimated cost in 2008 for a hypothetical underweight, homozygous F508del-CFTR 6-year-old female without chronic Pseudomonas aeruginosa/Staphylococcus aureus, CF-related diabetes (CFRD) or methicillin-resistant S. aureus (MRSA), and with a poor percent predicted forced expiratory volume in 1 s (ppFEV1) was €10,113, and was €21,082 in a 25-year-old with the same hypothetical profile. Chronic P. aeruginosa infection increased baseline cost by 39%, CF co-morbidity diabetes by 18%, and frequency of pulmonary exacerbation by 15%. Underweight, declining ppFEV1, chronic S. aureus colonisation, and time also influenced cost. CONCLUSIONS: CFTR mutation is an important factor influencing the cost of CF care. Costs differ among cohorts of CF patients eligible to access new and emerging CFTR repair therapies. These findings support the evaluation of outcome-associated cost in CFTR mutation-specific CF patient groups.

Patient level cost of diabetes self-management education programmes: an international evaluation.

OBJECTIVES: The objective of this study was to examine the value of time-driven activity-based costing (TDABC) in understanding the process and costs of delivering diabetes self-management education (DSME) programmes in a multicountry comparative study. SETTING: Outpatient settings in five European countries (Austria, Denmark, Germany, Ireland, UK) and two countries outside Europe, Taiwan and Israel. PARTICIPANTS: Providers of DSME programmes across participating countries (N=16) including healthcare professionals, administrators and patients taking part in DSME programmes. PRIMARY AND SECONDARY MEASURES: Primary measure: time spent by providers in the delivery of DSME and resources consumed in order to compute programme costs. Secondary measures: self-report measures of behavioural self-management and diabetes disease/health-related outcomes. RESULTS: We found significant variation in costs and the processes of how DSME programmes are provided across and within countries. Variations in costs were driven by a combination of price variances, mix of personnel skill and efficiency variances. Higher cost programmes were not found to have achieved better relative outcomes. The findings highlight the value of TDABC in calculating a patient level cost and potential of the methodology to identify process improvements in guiding the optimal allocation of scarce resources in diabetes care, in particular for DSME that is often underfunded. CONCLUSIONS: This study is the first to measure programme costs using estimates of the actual resources used to educate patients about managing their medical condition and is the first study to map such costs to self-reported behavioural and disease outcomes. The results of this study will inform clinicians, managers and policy makers seeking to enhance the delivery of DSME programmes. The findings highlight the benefits of adopting a TDABC approach to understanding the drivers of the cost of DSME programmes in a multicountry study to reveal opportunities to bend the cost curve for DSME.