Aims of open health data initiatives vary

The most common reported aim of an open health data initiative was to increase transparency in and access to aggregated health statistics as part of a public-sector wide initiative (Canada, Finland, Italy, New Zealand, Singapore and Switzerland). The open health data initiatives in Iceland, Korea, the United Kingdom and the United States have a broader set of aims, including improving the availability and use of de-identified microdata. In Iceland, the initiative is also inclusive of an effort to improve secure access for individuals to their own health records, beginning with immunisation records and expanding to prescription medicines.

The open health data initiative in Italy has a secondary aim to improve data exchange among public authorities. The objective is to improve public administration and reduce the burden on persons and organisations by asking once for information needed by more than one public authority, rather than making multiple requests for the same information. Under this objective, identifiable data can be exchanged, if there is an act that authorises the exchange and provides clarity regarding the scope and rules of the exchange. There also must be security around the exchange of the data to protect it. An example is the exchange of medical certificates regarding illnesses which may be shared from the doctor to other organisations authorised to access the data, such as the Social Security Agency.

The open health data initiative in the United Kingdom is a comprehensive initiative that includes strategic planning about the open public-sector data strategy and the strategy for open health data specifically, and includes guidelines and a rating system for included data, and policies to promote freely available data and to ensure that data are open and transparent wherever possible (see Box 4.1).

Box 4.1. Open government health data: United Kingdom, England

In the United Kingdom, England, there is a cross-government policy to promote transparency and open data across the public sector in support of greater public accountability and service user choice and to support economic growth (United Kingdom, 2012). This work is led from the Cabinet Office and includes an Open Government Partnership. Through the open data initiatives, departments are asked to look carefully at the reasons why data have not been made available more widely, particularly if requests through indicate it should receive a high priority for becoming available.

The UK National Action Plan describes plans for national information infrastructure including the key datasets from the public sector of greatest value and utility, such as key geo-spatial data (where to find a GP, information on costs for services, etc.). The objective in providing access to government data is to stimulate the development of tools and apps from the raw data. The UK National Archives provides open government licences that set out the terms and conditions that must be respected when using open government data. For example, the source of the data used must be acknowledged. There are strong legislations and information governance to support data privacy protection. The open government strategy intends to enable data to be used freely. There is a push across government to make more of its data available in machine readable/reusable format. There is a rating system for the data that have been provided, ranging from level 1 which are data that are not very useable for secondary analysis, such as PDF documents, up to level 5, which are data provided in a useable, flexible format. Most of the data provided by the HSCIC have been given a rating of 3 which indicates that the data are analysable, in an MS Excel or CSV format.

Some government departments had a policy of charging users for access to data and, as a result, resist making the same data freely available. Further, some will use the data to create apps or tools that are sold. However, the government view is that the taxpayer has already paid for the data to be collected and should not be asked to pay a second time. Some of the elements of the strategy to promote open government data have been financed with existing budgets. Other areas have received new funding. All of the funding has come from public budgets.

More work is needed to measure the cost/benefit impact of the open data strategy in the United Kingdom. A disadvantage of making data open and freely available under UK Open Government Licence is a lack of information about who is using the data and about what is the outcome of the use of the data. There is some on-going consultancy work on how to measure financial impacts or savings from providing open data and to describe the potential uses of data to support the sustainability of the NHS. There are, however, examples of the benefits of more open health data. Following the availability of data on prescription medicines in primary health care by dosage by month, a study found unwarranted variation in prescribing patterns and estimated that if all practices used generics appropriately, it would save the NHS GBP 200 million per year.

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