Social care data and its fitness for integrated health and social care service governance: an exploratory qualitative analysis in the Dutch context.

INTRODUCTION: To date, little is known on how social care data could be used to inform performance-based governance to accelerate progress towards integrated health and social care. OBJECTIVES AND DESIGN: This study aims to perform a descriptive evaluation of available social care data in the Netherlands and its fitness for integrated health and social care service governance. An exploratory mixed-method qualitative study was undertaken based on desktop research (41 included indicators), semi-structured expert interviews (13 interviews including 18 experts) and a reflection session (10 experts). SETTING: The Netherlands; social care is care provided in accordance with the Social Support Act, the Participation Law and the Law for Municipal debt-counselling. RESULTS: This study found six current uses for social care data: (a) communication and accountability, (b) monitoring social care policy, (c) early warning systems, (d) controls and fraud detection, (e) outreaching efforts and (f) prioritisation. Further optimisation should be sought through: standardisation, management of data exchange across domains, awareness of the link between registration and financing, strengthening the overall trust in data sharing. The study found five ways the enhanced social care data could be used to improve the governance of integrated health and social care services: (a) cross-domain learning and cooperation (eg, through benchmarks), (b) preventative measures and early warning systems, (c) give insight regarding the quality and effectivity of social care in a broader perspective, (d) clearer accountability of social care towards contracting parties and policy, (e) enable cross-sector data-driven governance model. CONCLUSION: Although there are several innovative initiatives for the optimisation of the use of social care data in the Netherlands, the current social care data landscape and management is not yet fit to support the new policy initiatives to strengthen integrated health and social care service governance. Directions for addressing the shortcomings are provided.

Citizen engagement in healthcare procurement decision-making by healthcare insurers: recent experiences in the Netherlands.

BACKGROUND: In insurance-based healthcare systems, healthcare insurers are interested in engaging citizens in care procurement to contract healthcare services that matter to people. In the Netherlands, an amendment to the Health Insurance Act was set forth in 2021 to formalize and strengthen the engagement of the insured population with healthcare insurers' procurement cycles. This study explores the role of Dutch healthcare insurers in operationalizing citizen engagement in procurement cycles before changes occur linked to the amendment to the Health Insurance Act. METHODS: A phenomenological qualitative design was employed in two phases: (1) we consulted academics and policy experts on the role of healthcare insurers regarding citizen engagement; (2) we conducted focus groups with representatives of healthcare insurers to understand how citizens' engagement is being operationalized. Transcripts of the interviews with experts and detailed notes of focus group meetings were analysed using a qualitative inductive approach. Selected excerpts were analysed on discourse and content and organized by a coding scheme following a rigorous and accelerated data reduction technique. RESULTS: We identified four strategies used by healthcare insurers to operationalize citizen engagement: (1) broadening their population health orientation; (2) developing and improving mechanisms for engaging citizens; (3) strengthening features of data governance for effective use of value-driven data; (4) implementing financial and incentive mechanisms among healthcare providers in support of value-based healthcare. However, regulated market mechanisms and low institutional trust in healthcare insurers undermine their transition from merely funding healthcare towards becoming people-centred value-based healthcare purchasers. CONCLUSION: Dutch healthcare insurers seem to be strengthening the community orientation of their functioning while enhancing the end-to-end experience of the insured. The expected practical effects of the amendment to the Health Insurance Act include broadening the role of the council of insurees in decision-making processes and systematically documenting the efforts set forth by healthcare insurers in engaging citizens. Further research is needed to better understand how the regulated competitive market could be hampering the engagement of citizens in healthcare procurement decision-making and value creation from the citizens' perspective.

The experiences of 33 national COVID-19 dashboard teams during the first year of the pandemic in the World Health Organization European Region: A qualitative study.

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.

Implementing structured follow-up of neonatal and paediatric patients: an evaluation of three university hospital case studies using the functional resonance analysis method.

BACKGROUND: In complex critical neonatal and paediatric clinical practice, little is known about long-term patient outcomes and what follow-up care is most valuable for patients. Emma Children's Hospital, Amsterdam UMC (Netherlands), implemented a follow-up programme called Follow Me for neonatal and paediatric patient groups, to gain more insight into long-term outcomes and to use such outcomes to implement a learning cycle for clinical practice, improve follow-up care and facilitate research. Three departments initiated re-engineering and change processes. Each introduced multidisciplinary approaches to long-term follow-up, including regular standardised check-ups for defined age groups, based on medical indicators, developmental progress, and psychosocial outcomes in patients and their families. This research evaluates the implementation of the three follow-up programmes, comparing predefined procedures (work-as-imagined) with how the programmes were implemented in practice (work-as-done). METHODS: This study was conducted in 2019-2020 in the outpatient settings of the neonatal intensive care, paediatric intensive care and paediatric surgery departments of Emma Children's Hospital. It focused on the organisational structure of the follow-up care. The functional resonance analysis method (FRAM) was applied, using documentary analysis, semi-structured interviews, observations and feedback sessions. RESULTS: One work-as-imagined model and four work-as-done models were described. The results showed vast data collection on medical, developmental and psychosocial indicators in all work-as-done models; however, process indicators for programme effectiveness and performance were missing. In practice there was a diverse allocation of roles and responsibilities and their interrelations to create a multidisciplinary team; there was no one-size-fits-all across the different departments. Although control and feedback loops for long-term outcomes were specified with respect to the follow-up groups within the programmes, they were found to overlap and misalign with other internal and external long-term outcome monitoring practices. CONCLUSION: Implementing structured long-term follow-up may provide insights for improving daily practice and follow-up care, with the precondition of standardised measurements. Lessons learned from practice are (1) to address fragmentation in data collection and storage, (2) to incorporate the diverse ways to create a multidisciplinary team in practice, and (3) to include timely actionable indicators on programme effectiveness and performance, alongside medical, developmental and psychosocial indicators.

Development and Actionability of the Dutch COVID-19 Dashboard: Descriptive Assessment and Expert Appraisal Study.

BACKGROUND: Web-based public reporting by means of dashboards has become an essential tool for governments worldwide to monitor COVID-19 information and communicate it to the public. The actionability of such dashboards is determined by their fitness for purpose-meeting a specific information need-and fitness for use-placing the right information into the right hands at the right time and in a manner that can be understood. OBJECTIVE: The aim of this study was to identify specific areas where the actionability of the Dutch government's COVID-19 dashboard could be improved, with the ultimate goal of enhancing public understanding of the pandemic. METHODS: The study was conducted from February 2020 to April 2021. A mixed methods approach was carried out, using (1) a descriptive checklist over time to monitor changes made to the dashboard, (2) an actionability scoring of the dashboard to pinpoint areas for improvement, and (3) a reflection meeting with the dashboard development team to contextualize findings and discuss areas for improvement. RESULTS: The dashboard predominantly showed epidemiological information on COVID-19. It had been developed and adapted by adding more in-depth indicators, more geographic disaggregation options, and new indicator themes. It also changed in target audience from policy makers to the general public; thus, a homepage was added with the most important information, using news-like items to explain the provided indicators and conducting research to enhance public understanding of the dashboard. However, disaggregation options such as sex, socioeconomic status, and ethnicity and indicators on dual-track health system management and social and economic impact that have proven to give important insights in other countries are missing from the Dutch COVID-19 dashboard, limiting its actionability. CONCLUSIONS: The Dutch COVID-19 dashboard developed over time its fitness for purpose and use in terms of providing epidemiological information to the general public as a target audience. However, to strengthen the Dutch health system's ability to cope with upcoming phases of the COVID-19 pandemic or future public health emergencies, we advise (1) establishing timely indicators relating to health system capacity, (2) including relevant data disaggregation options (eg, sex, socioeconomic status), and (3) enabling interoperability between social, health, and economic data sources.

Exploring Changes to the Actionability of COVID-19 Dashboards Over the Course of 2020 in the Canadian Context: Descriptive Assessment and Expert Appraisal Study.

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.

Improving performance intelligence for governing an integrated health and social care delivery network: a case study on the Amsterdam Noord district.

BACKGROUND: A guiding principle of a successful integrated health and social care delivery network is to establish a governance approach based on learning, grounded in a data and knowledge infrastructure. The 'Krijtmolen Alliantie' is a network of health and social care providers with the ambition to realize such a performance intelligence driven governance model in line with the Triple Aim. This study seeks to identify what performance intelligence is available and how it can be improved. METHODS: This case study was conducted in the district of Amsterdam Noord, the Netherlands, and employed 23 semi-structured interviews with stakeholders in health and social care, a feasibility analysis of available administrative data, and a reflection meeting with board members of the 'Krijtmolen Alliantie'. Information needs for performance intelligence by the stakeholders were mapped and a data landscape of the district covered by the network was drafted. Finally, in the reflection meeting with board members of the 'Krijtmolen Alliantie' the information needs and data landscape were aligned with governing needs, resulting in priority domains around which to strengthen the data infrastructure for governance of the integrated health and social care delivery network. RESULTS: The 'Krijtmolen Alliantie' encompasses a network of providers with a diverse range of catchment areas. There are indicators on population health and welfare, however they have limited actionability for providers due to a misalignment with their respective catchment areas. There is a barrier in data exchange between health and social care providers. It is difficult to construct one indicator for per capita cost in the Dutch health data infrastructure as health and social care are subdivided in financing siloes. Priority domains for improvement of performance intelligence for the 'Krijtmolen Alliantie' are: 1) Per capita and per patient cost data integration that would allow combined accountability through aligning financial incentives to facilitate integrated care, and 2) combined patient experience and outcome measures to reflect network quality of care and patient experience performance. CONCLUSION: Available performance intelligence lacks actionability for the governance of integrated care networks. Our recommendation is to align performance intelligence with the regional governance responsibilities of stakeholders for health and social care delivery.

Features Constituting Actionable COVID-19 Dashboards: Descriptive Assessment and Expert Appraisal of 158 Public Web-Based COVID-19 Dashboards.

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.