Europe moves forward on citizens’ secure access to their health data

Countries in the European Union (EU) are clearly working in a very dedicated way to provide their citizens with secure access to their health data.

The Digital Health Europe multi-stakeholder group has worked on delivering a brief report about citizens’ secure access to and sharing of health data across borders in Europe.

Following a survey, the group has captured information on a number of initiatives occurring around Europe, and their associated success factors and barriers to success. These initiatives will be described in a report due to be completed in November 2019. The outcomes of the report will contribute to the development of a White Paper on better citizen access and control of data, which will outline a set of recommendations and guidelines.

European initiatives on citizens’ secure access to data, including citizens’ portals

A report on citizens’ secure access to data analyses 24 initiatives (also called “projects”) from 11 different countries in Europe. Of these, 11 initiatives are taking place at national level, nine at regional level and four at European level. Although most projects are organised at national level, the number of regional projects is very high. From the selected projects, 18 are complete and are now implemented in their respective countries. Six are still under development (i.e., through the Horizon 2020 (H2020) programme).

Most initiatives/projects refer to the existence of a citizen portal, where citizens can access their health data. Most of these portals enable the scheduling of medical appointments and digital prescriptions, and – in some cases such as Estonia and Portugal – repeat prescriptions for people with chronic conditions.

Examples of data that can be accessed through such portals include:

  • diagnostic images,
  • laboratory results,
  • medical records,
  • prescriptions,
  • vaccination information.

Important success factors and barriers to success

The most relevant factors that contributed to the success of the initiatives were:

  • user-friendliness,
  • high digital literacy,
  • a widespread interest in digital services,
  • availability of mobile technology,
  • financial incentives,
  • data security,
  • the provision of services, such as, digital prescriptions and digital health data.

In all the initiatives that were analysed, in relation to the security and protection of health data, a priority that was highlighted was:

  • the need for access to the portal to be strictly controlled through personal credentials. Examples of such credentials include the use of an identity (ID) card, mobile ID, a personal identification number (PIN), or usernames and passwords.

The identified barriers to implementation of the initiatives were:

  • a lack of digital literacy (mainly on the part of older people),
  • data often not being understandable to patients,
  • resistance to change (on the part of either or both patients and doctors),
  • interoperability issues,
  • a lack of dissemination of information about the initiatives.