Data Resource Profile: Nivel Primary Care Database (Nivel-PCD), The Netherlands

Résumé fourni par la source

Nivel Primary Care Database (Nivel-PCD) contains longitudinal, pseudonymized, linkable extracts from electronic health record (EHR) data of general practitioners (GPs), out-of-hours (OOH) GP services, physiotherapy practices, exercise therapy practices, speech therapy practices, and dietitian practices in the Netherlands. These primary care providers periodically supply Nivel-PCD (through their EHR software provider) with extracts of EHR data, including contacts, health problems, treatment, measurements, and referrals to secondary care. The coverage in 2023 was 1.8 million persons registered at 409 GPs, 12.3 million people living in a catchment area of 26 OOH-GP services, 970 000 patients who were treated in 508 physiotherapy practices, 25 000 patients in 116 exercise therapy practices, 54 000 patients in 175 speech therapy practices, and 68 000 patients in 83 dietitian practices. Data are available at contact levels from 2011 onwards, can be aggregated to any other overarching level (e.g. individual, practice, region), and are linkable with other data sources such as secondary care, social care, or social economic data. The unique combination of integrated data from various primary care disciplines in the Netherlands provides unique opportunities for research. Data are accessible upon request for bona fide researchers worldwide; researchers can file a data request through nivel.nl/en/our-databases-and-panels/nivel-primary-care-database. Large amounts of health data are recorded routinely in healthcare settings. In many countries, primary care facilities use an electronic health record (EHR) system. The data that are recorded in these systems for patient care and administrative purposes are increasingly used for other purposes as well, known as “secondary” or “further” use [1]. The purposes of the secondary use of primary care data include epidemiology, incidence and prevalence of (chronic) diseases, disease surveillance, and analysis of patterns of healthcare utilization. Moreover, primary care data are used to construct and monitor quality of care and to evaluate policy measures. Primary care data are increasingly linked to other data sources, to form a more complete picture of patient groups, their health problems, and their use of care, and to follow patients on their journey through the health and social care system [2]. Nivel, the Netherlands Institute for Health Services Research, started a paper-based sentinel network of general practices in 1970 in order to gain insight into the epidemiology of a number of illnesses and conditions that were presented to the general practitioner (GP) [3]. This network infrastructure transitioned in the 1990s from paper-based data collection into extractions from EHRs and broadened to include GPs as well as other primary healthcare providers; it is currently known as Nivel Primary Care Database (Nivel-PCD). In the Netherlands, the GP acts as the first access point to the healthcare system and almost every citizen is registered with a GP [4]. Medical care during office hours is provided by GPs. The provision of urgent out-of-hours (OOH) primary care is managed collaboratively in regional cooperatives (OOH-GP services). Practices that are participating in Nivel-PCD are located across the country, as shown in Figure 1. The Netherlands is a small country (i.e. 41 543 km2) with 17.8 million citizens [5]. The three largest cities (Amsterdam, Rotterdam, and the Hague; each with >500 000 citizens) are located in the west of the country. The northern, eastern, and southern regions have middle-sized cities and more rural areas. Coverage of participation in Nivel Primary Care Database, the Netherlands, 2023. (a) General practices. (b) Out-of-hours general practitioner services (coverage yes/no). (c) Physiotherapy practices. (d) Exercise therapy practices. (e) Speech therapy practices. (f) Dietitian practices. Darker shades indicate higher coverage. Areas with the lightest shade have no coverage. In 2023, Nivel-PCD for GPs had a nationally representative coverage of 10% of the Dutch population (i.e. 1.8 million) in 409 participating GPs out of a national total of 4900 [6]. The catchment area of the OOH-GP services in Nivel-PCD represented 69% of the Dutch population (i.e. 12.3 million). From the 52 OOH-GP services in the Netherlands, 26 (i.e. 50%) participated in 2023. Coverage of the yearly provided care by the participating physiotherapy and exercise therapy practices was 17% and 13%, respectively, based on the number of therapists in Nivel-PCD compared with the total number of therapists in the Netherlands in 2023. Coverage of the yearly provided care by dietitian and speech therapy practices was 16% and 19%, respectively, based on the number of patients in Nivel-PCD compared with the number treated according to the Dutch Healthcare Authority [7]. Patients were registered at these practices when they had at least one contact with the allied health professional. The representativeness of practices that are participating in Nivel-PCD is shown in more detail in the Supplementary material. Around 35 general practices, so-called GP sentinel practices, act as a nationally representative subgroup of ±1% of general practices in the Netherlands. The GP sentinel practices collect data through ICPC-triggered questionnaires concerning e.g. influenza, eating disorders, or suicidality [8] and have a coverage of ∼135 000 registered persons (i.e. 0.8% of the Dutch population). For disease surveillance purposes, ∼100 of GP sentinel practices, with a coverage of ∼500 000 registered persons (i.e. 3% of the Dutch population), collect oro-/nasopharyngeal swabs from a selection of patients who present with influenza-like illness. A selection of GP sentinel practices provide questionnaires and collect swabs (Figure 2). The data collected from the GP sentinel practices are not requestable, and are therefore not mentioned under “Data collected.” Geographical spread (at the level of municipalities) of sentinel general practices participating in Nivel Primary Care Database, the Netherlands, 2024. Black circle: municipalities with sentinel practices participating in questionnaire data and oro-/nasopharyngeal swab collection. Gray: municipalities with sentinel practices participating only in oro-/nasopharyngeal swab collection. Black triangle: municipalities with sentinel practices participating in all types of activities. Under Dutch law, the use of EHRs data for research purposes is allowed under certain conditions without individual explicit or non-explicit consent. When these conditions are fulfilled, neither informed consent nor medical ethics committee approval are needed [1, 9]. Data may be used for research for the common good if consent is not practically feasible and if all possible measures have been taken, technically and organizationally, to avoid privacy risks. First, patients are informed appropriately about the existence of Nivel-PCD and an opt-out is offered. Patients are informed of this option with (digital) posters in the waiting rooms of participating primary care providers. Second, patient data are pseudonymized by a Trusted Third Party before leaving the EHR system of participating primary care practices. The pseudonymized data are subsequently sent to Nivel. Thus, directly identifiable information does not leave the EHR system while the pseudonyms allow data linkage between databases. So, pseudonymized EHR data are created in the practices, sent to Nivel, and stored in Nivel-PCD [9]. Third, the governance includes steering, scientific, privacy, and advisory committees that altogether safeguard Nivel-PCD activities. The steering committee consists of Nivel management and chairs of the scientific committees. The scientific committees consist of representatives of umbrella organizations of professions that are participating in Nivel-PCD. The privacy committee consists of two data protection officers and a patient representat

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