With the ELAN data warehouse as a basis, Health Campus The Hague has built up a cross-domain data infrastructure in the regions of Haaglanden and Hollands Midden. This infrastructure is making the 'routine' data from both intramural and extramural medical domains, the social domain, and the living environment accessible.
Goal
The goal of this data infrastructure is to study health issues in society, policy-oriented regional and local landscapes relating to organisation, coordinate supply and demand in the care sector, develop and monitor proactive health-promoting interventions in the population, and, in due course, use structured feedback (both population-based and individually identifiable) of risks to healthcare providers to achieve an evidence-based Population Health Management in and with the field.
Standing data platform
The partnership with Statistics Netherlands (CBS) is making it possible to enrich a potentially societally relevant data set containing the data of approximately two million inhabitants of the Haaglanden region with detailed hospital care data from the Haaglanden Medical Center, hospital HagaZiekenhuis, the Parnassia group, existing and new general practitioner care data from a growing number of general practitioners in the Hague region, the public health data of the Municipal Health Centres in the region (GGD-Haaglanden), statutory health data sourced from the municipality of The Hague, Perined (information on pregnancy and maternity care), and the information pertaining to the living environment (such as air quality) obtained from the National Institute for Public Health and the Environment (RIVM). All data from the partners brought together in the data platform cannot be linked and are accessible to researchers. The data from the data set cannot be traced back to individuals.
General practice routine care data
For the routine care data of general practitioners, due to the manageability of the large volumes of data and the many different systems in use, the project is working with a number of data providers that are already processing file information from general practices for other reasons (in most cases relating to accountability for integrated care), and which are producing analysable files from that data.
Use of these data processing services/interfaces is necessary in order to link to the HIS data and share it with the regional platform, as well as to, on the ‘way back’, organise the use of the results of the research in the region. For more information on the processing of data from general practices for research purposes,
Health data governance
In the creation of this regional data platform, a great deal of time and energy was invested in the development of the governance on data linking, data sharing, and the use and reuse of data (including, in part, compliance with the GDPR, knowledge-building among partner data protection officers, and development of data agreements). This knowledge will be of value for the use/rollout in other regions.
In preparation
Use and development of data visualisations
Because at this stage the cross-domain data collection has accelerated dramatically, visualisation has become an important tool for translating the linked data into usable information. At present, the project is working on visualisations for both the residents of The Hague and the partners of the Health Campus, as well as beyond. This will allow data to be used in the new and innovative care and welfare environment that we are jointly creating.
Use of free text data
Under the partnership with the Faculty of Science, the Leiden Institute of Advanced Computer Science (LIACS), and a shared chair in the Population Health Living Lab, research is currently being conducted into the use of policy-rich, unstructured (uncoded) information in the form of raw text and speech from the various medical and other files.
Growing into real-time data use
The most significant challenge in the near future will be more real-time use of data. This will be a necessary facility for data-driven Population Health Management but can only happen if the basic facility is up-to-date, well-maintained, and of high quality. This means not only that the cycle of extraction, organisation, analysis, and reporting must happen at a higher frequency (now quarterly or annually), but also that periodically structured and traceable information based on the results of the analyses will have to be reported back to the partners in the chain, so that the results can be increasingly applied in projects and in routine care.
Social and scientific interest
This regional data platform has established a unique use case for a basic infrastructure for intersectoral promotion of health via regional health arrangements for the local, regional, and national levels.
The data infrastructure establishes the connection between regional and local parties from the social, environmental, and care and public care domains. Within this framework, researchers, policy-makers, and members of the public are already making arrangements on local health targets. But this project is also working closely with other ongoing projects at the national level. This infrastructure will be the basis for future data-driven health policy in the Haaglanden region: Population Health Management made practice.
Based on a shared picture to be developed from the data of the risks, adverse health events, and mismatches between care supply and care needs in the region, targets can be determined, and an approach can be developed, monitored, and evaluated.
An initial step towards data visualisations at the regional level is already available at https://gezondengelukkigdenhaag.nl/wijkprofielen (in Dutch).
This represents actual support and promotion of cooperation and intersectoral promotion of health (‘health in all policies’). This is an approach that has been advocated in recent recommendations to the Government (Social-economic Council, Council for Public Health & Society, RIVM, the Verwey-Jonkers Institute) and strived for by the NFU (research and innovation with and for the healthy region) and Leiden University (the Open Science programme and inter-faculty stimulus programme Population Health Living Lab).
Basic infrastructure for regional projects and programmes
The currently available data platform presently supports a large number of relevant research programs, including Healthy and Happy The Hague, Vascular The Hague, ‘Hart voor Vrouwen’, Hotspotters, The Hague transition project/JZOJP, ‘Welzijn op recept’, the Hip Airbag business case, Intense, MUPS, ‘Kwetsbaar Ouderschap’, the Youth Prevention Model, Integral primary care for identification of psychosocial problems among children (PIPPI), and several diabetes projects.
In recent years, multiple researchers have demonstrated the scientific value of the data infrastructure in publications such as the determination of risk strata for Population Health Management based on Adjusted Clinical Care Groups (Girwar et al. 2021), the impact of social determinants on diabetes care (van Bruggen et al. 2021), risk assessments for cardiovascular diseases (Kist 2021, Nieuwenhuijse 2021), vulnerability among the elderly (Ravensbergen 2020), mental health community health care issues among children and young people (Koning 2020 and 2021), MUPS risk (Kitselaar 2021), and antibiotics resistance (Sijbom 2021).
But along with scientific research, the campus’ partners are increasingly requesting to be able to use the data infrastructure for mirroring, managing, and quality information.
