A European data strategy is coming to the fore.
In February 2020, the European Commission released a Communication on the European Strategy for Data. The aim of this strategy is to create a single European data space – a genuine single market for data, open to data from across the world.
A public consultation on the strategy ran as a survey until 31 May 2020. The Commission intends to use the survey results to feed into initiatives on access to and re-use of data.
The first outcomes of the consultation have now been published. A summary report of the public consultation on the European strategy for data outlines the main results from more than 800 responses. About 230 organisations submitted position papers which are still being analysed by the European Commission (details of the process and material all received are documented and available for download here).
EHTEL was keen to contribute. It responded to the online consultation and submitted two position papers. It used its work on data strategies and data spaces to contribute.
EHTEL’s views on data re-use
Data re-use is of huge importance in terms of future steps towards the end of this decade.
Through an internal consultation mechanism (see How did we get there?), EHTEL has developed five key messages:
Data use and re-use are vital, including for patient safety. Among the important diseases and conditions where data could be appropriately re-used are infectious diseases and complex chronic conditions (such as cancer treatment and cancer research). Healthcare organisations can benefit from data re-use in many ways: these involve public health, personalised medicine, organisational and management purposes, as well as research, development, and innovation.
- Technologies are key to services. Among these technologies are machine learning and artificial intelligence (AI) for the personalised promotion of healthier lifestyles. Investment in public infrastructures and technology is thus urgent to enable health data to be, as much as possible, captured and made machine-computable. Along these lines, data capturing technology at the point of care is a pre-requisite.
Data need to be made more open and available to every stakeholder. Examples include industry, governments at national and regional levels, and hospitals – citizens/patients too, of course. Obtaining the full benefits of health data re-use is reliant on meaningful real-world data sources and Europe-wide interoperability.
Sources of information are really important. General public awareness on the social benefits of data re-use needs to be developed. Certainly, existing sources of open data should be better promoted for wider usage.
- Citizens need to maintain control about the stakeholders with whom they want to share data. Citizens should be able to manage consents on their own with the help of easy-to-use applications and an integrated infrastructure. In turn, third parties should be able to request access to data for re-use purposes, and citizens should get feedback on the actual use of their data. Incentivisation schemes for citizens to agree on data re-use should be developed, on the grounds that this would be a contribution to social, public and community-based objectives.
Longer, more precise statements made by EHTEL members and friends are detailed in the two EHTEL position papers, both available publicly.
How did we get there?
EHTEL has developed three workstreams in its Imagining 2029 work programme. One is named Moving Towards European Health Data Space(s). It is supported by the EHTEL ELO network of eHealth Competence Centres.
The first webinar in this workstream was on “European Strategy for Data: Pathways for moving towards Health Data Space(s)”. It provided essential strategic and conceptual considerations related to the creation of such space(s) from the viewpoint of the health domain.
EHTEL considered that the webinar provided a good opportunity to offer the European Commission its members’ views from the healthcare sector on the European Strategy for Data.
Two internal consultations were organised to gather views. They resulted in two position papers:
- Position Paper 1 [Click to download the PDF document]
The Webinar was followed by a survey to EHTEL Members, eHealth Competence Centres and Friends.
- Position Paper 2 [Click to download the PDF document]
EHTEL acts as the health sector ambassador in the OPENDEI project. OPENDEI’s large-scale pilots were also asked to respond to a survey.
EHTEL believes that a number of key recommendations can be offered about the purposes of data re-use in health and care, and its broader implementation in health and care. Five key messages are the result.