Recent policy reports seem to lead in that direction and can help us to identify potential new initiatives in 2020 and beyond in areas such as digital health.
The OECD report Health in the 21st Century: putting data to work for stronger health systems considers the enabling role of data and digital technology in achieving transformational policies in health – including better service delivery models, empowered patients and stronger cross-border collaboration – while remaining mindful of potential stumbling blocks, for example concerning personal data protection or the implementation costs of health workforce training. The OECD stresses that the essential element of digital transformation is electronic health data management to provide the right information to the right person at the right time in a quick, efficient and cost-effective way. Yet despite some positive results, we are still waiting to see transformational impact in the health sector.
The recent State of Health in the EU Companion Report goes as far as to state that a lack of data and gaps in the accessibility of healthcare are undermining universal health coverage across the EU. The report highlights key trends in health systems and helps identify where and how health data could be valuably needed while the Country Health Profiles examine national health systems and underline the need for the European Commission to promote best practice across Member States.
What’s still needed to achieve true digital transformation?
The State of Health in the EU Companion Report suggests that many of those who would benefit from mobile health and other digital tools have limited access to them. On top of this there are still significant gaps in the data collected by EU Member States. More data is needed to measure how socioeconomic factors impact access and to take into account the different challenges faced by those with particular clinical needs or from different population groups. Gathering more data will reduce gaps in access and ensure more effective action and lower risks of complacency – for the benefit of health systems and, most importantly, patients.
Towards a European Health Data Space
Many stakeholders have already voiced their suggestions for creating a European Health Data Space, which may become more tangible in 2020. The challenges still to address range from governance (do we need an independent third party to assess the roles and interests of data subjects, providers and users?) to the access to, and use of, available data to guarantee quality and interoperability.
Initial work which carries the same ambition has begun under the Innovative Medicines Initiative in the form of a public-private partnership between the EU and the pharmaceutical industry, known as the EHDEN project (European Health Data and Evidence Network). Another new IMI project starting in 2020 will create Outcomes Observatories, ensuring direct collaboration between patient organisations and various independent structures to collect Patient Reported Outcomes that would be integral to Electronic Health Records and disease-specific registries. This would be a concrete step towards the goal of achieving patient-centred healthcare systems.
Building trust across multiple interested parties will be the ultimate ambition of any health data-related initiative. Any proposed approach and solutions should reflect and respect our European values, standards and vision. This makes the role of European institutions even more relevant – as facilitators, thought leaders and policy drivers at a global level.