More efforts needed to make health data open

Dutch governments are making ever more data available as open data. Although the health minister last year proclaimed as the ‘Year of Transparency’, still a lot of data concerning health and wellfare are unavailable, findable, accessible and reusable.

Although the ministry in 2015 and 2016 (.xlsx) participated in the Dutch government-wide data inventory and the Minister of Health assured that datasets would also be findable at the government’s open data portal, there are only 14 datasets to be found there. In addition, much healthcare data, especially data that does not fall under the direct control of the Ministry of Health is scattered in various (local) governments and institutions.

Most data on prices and volumes of medical treatments still closed

In the Netherlands, health care and welfare, are the largest share of public expending. For years there have been increasing demands for more transparency on costs, treatments and quality. Open State Foundation has been working for a number of years to open up data of public health spending. Even though the entire parliament in 2013 shared the view that the Ministry should had to put more effort into providing data on declared volumes, prices and quality, the Minister so far has shown few results.

Appeal on healthcare price transparency at the State Council

Since the end of 2013, Open State Foundation has used legal channels to open up data on volumes and prices of medical treatments. Meanwhile, some health insurers such as CZ and VGZ, some hospitals but also consumers have released a small portion of the data themselves. On November 15, the Council of State, the highest court in the Netherlands on FOIA requests, will discuss our legal appeal against the refusal of the Netherlands Health Autority to make prices and volumes of declared hospital treatments public.

Closed data on drug charges

Even the data that the Netherlands Care Institute on drug costs can not be reused. In the Netherlands spending on drugs is a big share of the total public expenditure on health. However, a reuse request from Open State Foundation for the data behind their website has been denied. Open State Foundation suspects that the Netherlands Care Institute in collecting the data on drugs from third parties did not apply the ARVODI conditions, which would have made reuse possible.

Open local health data

Health data that are not under the direct control of the Health Ministry, for example health data governed by local governments, is still too fragmented and hard to find. This is data on health care provided on local level, such as WMO and youth care. Also health care data without restrains on privacy, hold by the CAK, SVB, ACM, the Health Inspection, CIZ and municipal health services, should become available, findable, accessible and reusable. In particular because of the increasing demand for qualitative data which so far is only locally available. Since local governments can determine themselves how public funds are spend, it is important at the national level to fully understand the costs, performance and results of a sector that absorbs such a large part of public spending.

Enkelvoudige decentrale datalijst

In het Verenigd Koninkrijk wordt gebruik gemaakt van een zogenoemde ‘single data list‘ om informatie van lokale overheden op een gestandaardiseerde wijze met de nationale overheid te delen en centraal te ontsluiten. Voor Nederland zou een enkelvoudige decentrale datalijst met data die een bovenlokaal belang heeft op het terrein van volksgezondheid en welzijn een goede manier zijn om de beschikbaarheid en toegankelijkheid van data te verbeteren. Daarnaast is het van belang dat structureel middelen beschikbaar zijn om deze nationale infrastructuur voor open zorgdata beschikbaar, vindbaar, toegankelijk en herbruikbaar te maken.

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