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BACKGROUND: Between 2019 and 2021, the first Irish health system performance assessment (HSPA) framework was developed. As routinely collected health data are necessary to continuously populate indicators of an HSPA framework, a purpose-driven assessment of the health information system (HIS) in Ireland and its fitness to support the implementation of an HSPA framework was conducted. This study reports on the status of the Irish HIS through a multimethod assessment based on continuous broad stakeholder involvement. METHODS: Between May and November 2020, over 50 informants were engaged in individual and group interviews and stakeholder consultation workshops as part of the HIS assessment process. Descriptive themes and high-level data availability heatmaps were derived from interview and workshop data using thematic analysis. Indicator "passports" for the HSPA framework were populated during stakeholder consultation workshops and analysed using univariate descriptive statistics. RESULTS: The HIS in Ireland was able to provide administrative, survey and registry-based data for public sector acute care services, focusing on structure, process and output metrics. Significant data availability gaps, most notably from primary care, private hospitals and community care, were reported, with little availability of electronic health record and people-reported data. Data on outcome metrics were mostly missing, as were linkage possibilities across datasets for care pathway monitoring. The COVID-19 pandemic highlighted the national HIS's shortcomings but also the capacity for rapid development and improvement. CONCLUSIONS: A tailor-made assessment of the HIS in Ireland, involving a broad set of relevant stakeholders, revealed strengths, weaknesses and areas for improvement in the Irish health data landscape. It also contributed to the development of a national HSPA framework and momentum to further strengthen data infrastructure and governance, while working towards a more data-driven and person-centred healthcare system. This work demonstrates the utility of an inclusive HIS assessment process and is applicable beyond Ireland, where this case study was conducted.
Subject(s)
COVID-19 , Health Information Systems , Humans , Ireland , Pandemics , Government ProgramsABSTRACT
Background: Governments across the World Health Organization (WHO) European Region have prioritised dashboards for reporting COVID-19 data. The ubiquitous use of dashboards for public reporting is a novel phenomenon. Objective: This study explores the development of COVID-19 dashboards during the first year of the pandemic and identifies common barriers, enablers and lessons from the experiences of teams responsible for their development. Methods: We applied multiple methods to identify and recruit COVID-19 dashboard teams, using a purposive, quota sampling approach. Semi-structured group interviews were conducted from April to June 2021. Using elaborative coding and thematic analysis, we derived descriptive and explanatory themes from the interview data. A validation workshop was held with study participants in June 2021. Results: Eighty informants participated, representing 33 national COVID-19 dashboard teams across the WHO European Region. Most dashboards were launched swiftly during the first months of the pandemic, February to May 2020. The urgency, intense workload, limited human resources, data and privacy constraints and public scrutiny were common challenges in the initial development stage. Themes related to barriers or enablers were identified, pertaining to the pre-pandemic context, pandemic itself, people and processes and software, data and users. Lessons emerged around the themes of simplicity, trust, partnership, software and data and change. Conclusions: COVID-19 dashboards were developed in a learning-by-doing approach. The experiences of teams reveal that initial underpreparedness was offset by high-level political endorsement, the professionalism of teams, accelerated data improvements and immediate support with commercial software solutions. To leverage the full potential of dashboards for health data reporting, investments are needed at the team, national and pan-European levels.
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BACKGROUND: The General Data Protection Regulation is a regulation in EU law on data protection and privacy in the European Union. We aimed to provide an overview of the General Data Protection Regulation (GDPR) enablers and barriers to the secondary use of health data in Europe from the research we conducted in the Joint Action InfAct (Information for Action!) WP10 Assessing and piloting interoperability for public health policy, as well as to provide an example of a national-level case study on experiences with secondary use of health data and GDPR on an example of the Austrian COVID-19 data platform. METHODS: We have identified a number of European initiatives, projects and organizations that have dealt with cross-border health data sharing, linkage and management by desk research and we conducted 17 semi-structured in-depth interviews and analyzed the interview transcripts by framework analysis. RESULTS: GDPR was seen as an enabler to the secondary use of health data in Europe when it comes to user rights over their data, pre-existing laws regarding data privacy and data sharing, sharing anonymized statistics, developing new data analysis approaches, patients` trust towards dealing with their health data and transparency. GDPR was seen as a barrier to the secondary use of health data in Europe when it comes to identifiable and individual-level data, data sharing, time needed to complete the process, workload increase, differences with local legal legislations, different (and stricter) interpretations and access to data. CONCLUSION: The results of our analysis show that GDPR acts as both an enabler and a barrier for the secondary use of health data in Europe. More research is needed to better understand the effects of GDPR on the secondary use of health data which can serve as a basis for future changes in the regulation.
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Background: Public web-based COVID-19 dashboards are in use worldwide to communicate pandemic-related information. Actionability of dashboards, as a predictor of their potential use for data-driven decision-making, was assessed in a global study during the early stages of the pandemic. It revealed a widespread lack of features needed to support actionability. In view of the inherently dynamic nature of dashboards and their unprecedented speed of creation, the evolution of dashboards and changes to their actionability merit exploration. Objective: We aimed to explore how COVID-19 dashboards evolved in the Canadian context during 2020 and whether the presence of actionability features changed over time. Methods: We conducted a descriptive assessment of a pan-Canadian sample of COVID-19 dashboards (N = 26), followed by an appraisal of changes to their actionability by a panel of expert scorers (N = 8). Scorers assessed the dashboards at two points in time, July and November 2020, using an assessment tool informed by communication theory and health care performance intelligence. Applying the nominal group technique, scorers were grouped in panels of three, and evaluated the presence of the seven defined features of highly actionable dashboards at each time point. Results: Improvements had been made to the dashboards over time. These predominantly involved data provision (specificity of geographic breakdowns, range of indicators reported, and explanations of data sources or calculations) and advancements enabled by the technologies employed (customization of time trends and interactive or visual chart elements). Further improvements in actionability were noted especially in features involving local-level data provision, time-trend reporting, and indicator management. No improvements were found in communicative elements (clarity of purpose and audience), while the use of storytelling techniques to narrate trends remained largely absent from the dashboards. Conclusions: Improvements to COVID-19 dashboards in the Canadian context during 2020 were seen mostly in data availability and dashboard technology. Further improving the actionability of dashboards for public reporting will require attention to both technical and organizational aspects of dashboard development. Such efforts would include better skill-mixing across disciplines, continued investment in data standards, and clearer mandates for their developers to ensure accountability and the development of purpose-driven dashboards. (PsycInfo Database Record (c) 2022 APA, all rights reserved)
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BACKGROUND: The launch in 2017 of the Irish 10-year reform programme Sláintecare represents a key commitment in the future of the health system. An important component of the programme was the development of a health system performance assessment (HSPA) framework. In 2019, the Department of Health of Ireland (DoH) and Health Service Executive (HSE) commissioned the technical support of researchers to develop an outcome-oriented HSPA framework which should reflect the shared priorities of multiple stakeholders, including citizens. This study describes the method applied in the Irish context and reflects on the added value of using a citizen panel in the development of an HSPA framework. METHODS: A panel of 15 citizens was convened, recruited by a third-party company using a sampling strategy to achieve a balanced mix representing the Irish society. Panellists received lay-language preparatory materials before the meeting. Panellists used a three-colour scheme to signal the importance of performance measures. An exit questionnaire was administered to understand how participants experienced being part of the panel. The citizen panel was the first in a series of three panels towards the development of the HSPA framework, followed by panels including representatives of the DoH and HSE, and representatives from professional associations and special interest groups. RESULTS: The citizen panel generated 249 health performance measures ranging across 13 domains. Top-ranking domains to the citizen panel (people-centredness, coordination of care, and coverage) were less prioritized by the other panels; domains less prioritized by the citizen panel, such as accessibility, responsiveness, efficiency, and effectiveness, were of higher priority in the other panels. Citizen panellists shared a similar understanding of what a citizen panel involves and described their experience at the panel as enjoyable, interesting, and informative. CONCLUSIONS: The priorities of the citizen panel were accounted for during all phases of developing the HSPA framework. This was possible by adopting an inclusive development process and by engaging citizens early on. Citizen engagement in HSPA development is essential for realizing citizen-driven healthcare system performance and generating trust and ownership in performance intelligence. Future research could expand the use of citizen panels to assess, monitor, and report on the performance of healthcare systems.
Subject(s)
Government Programs , Humans , IrelandABSTRACT
BACKGROUND: Since the outbreak of COVID-19, the development of dashboards as dynamic, visual tools for communicating COVID-19 data has surged worldwide. Dashboards can inform decision-making and support behavior change. To do so, they must be actionable. The features that constitute an actionable dashboard in the context of the COVID-19 pandemic have not been rigorously assessed. OBJECTIVE: The aim of this study is to explore the characteristics of public web-based COVID-19 dashboards by assessing their purpose and users ("why"), content and data ("what"), and analyses and displays ("how" they communicate COVID-19 data), and ultimately to appraise the common features of highly actionable dashboards. METHODS: We conducted a descriptive assessment and scoring using nominal group technique with an international panel of experts (n=17) on a global sample of COVID-19 dashboards in July 2020. The sequence of steps included multimethod sampling of dashboards; development and piloting of an assessment tool; data extraction and an initial round of actionability scoring; a workshop based on a preliminary analysis of the results; and reconsideration of actionability scores followed by joint determination of common features of highly actionable dashboards. We used descriptive statistics and thematic analysis to explore the findings by research question. RESULTS: A total of 158 dashboards from 53 countries were assessed. Dashboards were predominately developed by government authorities (100/158, 63.0%) and were national (93/158, 58.9%) in scope. We found that only 20 of the 158 dashboards (12.7%) stated both their primary purpose and intended audience. Nearly all dashboards reported epidemiological indicators (155/158, 98.1%), followed by health system management indicators (85/158, 53.8%), whereas indicators on social and economic impact and behavioral insights were the least reported (7/158, 4.4% and 2/158, 1.3%, respectively). Approximately a quarter of the dashboards (39/158, 24.7%) did not report their data sources. The dashboards predominately reported time trends and disaggregated data by two geographic levels and by age and sex. The dashboards used an average of 2.2 types of displays (SD 0.86); these were mostly graphs and maps, followed by tables. To support data interpretation, color-coding was common (93/158, 89.4%), although only one-fifth of the dashboards (31/158, 19.6%) included text explaining the quality and meaning of the data. In total, 20/158 dashboards (12.7%) were appraised as highly actionable, and seven common features were identified between them. Actionable COVID-19 dashboards (1) know their audience and information needs; (2) manage the type, volume, and flow of displayed information; (3) report data sources and methods clearly; (4) link time trends to policy decisions; (5) provide data that are "close to home"; (6) break down the population into relevant subgroups; and (7) use storytelling and visual cues. CONCLUSIONS: COVID-19 dashboards are diverse in the why, what, and how by which they communicate insights on the pandemic and support data-driven decision-making. To leverage their full potential, dashboard developers should consider adopting the seven actionability features identified.
Subject(s)
COVID-19 , Data Display , Information Dissemination , Internet , Adult , Computer Graphics , Disease Outbreaks , Female , Humans , Information Storage and Retrieval , Male , Pandemics , SARS-CoV-2 , Young AdultABSTRACT
BACKGROUND: Public web-based COVID-19 dashboards are in use worldwide to communicate pandemic-related information. Actionability of dashboards, as a predictor of their potential use for data-driven decision-making, was assessed in a global study during the early stages of the pandemic. It revealed a widespread lack of features needed to support actionability. In view of the inherently dynamic nature of dashboards and their unprecedented speed of creation, the evolution of dashboards and changes to their actionability merit exploration. OBJECTIVE: We aimed to explore how COVID-19 dashboards evolved in the Canadian context during 2020 and whether the presence of actionability features changed over time. METHODS: We conducted a descriptive assessment of a pan-Canadian sample of COVID-19 dashboards (N=26), followed by an appraisal of changes to their actionability by a panel of expert scorers (N=8). Scorers assessed the dashboards at two points in time, July and November 2020, using an assessment tool informed by communication theory and health care performance intelligence. Applying the nominal group technique, scorers were grouped in panels of three, and evaluated the presence of the seven defined features of highly actionable dashboards at each time point. RESULTS: Improvements had been made to the dashboards over time. These predominantly involved data provision (specificity of geographic breakdowns, range of indicators reported, and explanations of data sources or calculations) and advancements enabled by the technologies employed (customization of time trends and interactive or visual chart elements). Further improvements in actionability were noted especially in features involving local-level data provision, time-trend reporting, and indicator management. No improvements were found in communicative elements (clarity of purpose and audience), while the use of storytelling techniques to narrate trends remained largely absent from the dashboards. CONCLUSIONS: Improvements to COVID-19 dashboards in the Canadian context during 2020 were seen mostly in data availability and dashboard technology. Further improving the actionability of dashboards for public reporting will require attention to both technical and organizational aspects of dashboard development. Such efforts would include better skill-mixing across disciplines, continued investment in data standards, and clearer mandates for their developers to ensure accountability and the development of purpose-driven dashboards.