Digital Agenda for Europe
A Europe 2020 Initiative

Giving patients access to their health data: pilot results

Since 2012, eleven regions from across the European Union have been participating in the EU-funded SUSTAINS project: a joint learning initiative giving patients access to their personal health records and other online services. Their efforts have started to pay off.
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Progress to date

A recent internal evaluation revealed significant success in the implementation of a number of key clinical and administrative services across all of the pilot sites. Key examples:

In Uppsala, Sweden (the pilot leading the project), the following milestones and benefits have been achieved:

  • 50,000 unique patients/citizens have used the service with a total of 250,000 logins.
  • There has been a significant improvement in the quality of the information held on the EHR.
  • Communication between the health care professional and the patient has been improved.
  • Patients feel more empowered with a more balanced relationship between the health care professional and patient.
  • Health care professionals have more time for clinical issues as a result of reducing administrative constraints.
  • Patients have achieved easier access to health services.
  • In addition, there are potential benefits in terms of patient safety and adherence to treatment.

In Estonia, a new version of the Estonian National Patient Portal was launched on 1 July 2013 although an earlier version was available from the end of 2008. It allows patients to log in by using their ID-card and/or Mobile-ID.

By March 2014:

  • More than 1.2 million persons had seen the medical documents stored in central health information system via the National Patient Portal.
  • The Estonian National Patient Portal had more than 66,000 unique users: the number has grown over the four years since first launch and the number of unique users is increasing.
  • More than 1,000 delegations of access had been compiled in the National Patient Portal and have been sent to the central information system.
  • More than 1,500 expressions of will had been compiled in the National Patient Portal and sent to the central information system.

Currently, the detailed specification about technical possibilities to develop access to the data of health services costs is in the process of completion.

In addition, developments of the service to compile Electronic Personal Health Statements from general practitioners is in the testing phase. Recent communication activities to promote the service resulted in an immediate doubling in the number of unique users over a typical week.

Southern Europe

In Southern Europe, SUSTAINS services are also flourishing as illustrated by the following examples:

In the Basque Region, all planned Sustains services have already been implemented and are available for the whole population (2,2 million people). Booking a consultation exam is the most popular within Sustains services with more than 2,8 million bookings completed from 2011 on.

Currently, around 32% of all non face-to-face bookings are done via the web. In addition, more than 9,000 people have already made use of the Basque Personal Health Folder, with a total of over 42000 accesses from July 2012.

In Asolo (Italy), the new EHR has been launched for professional use in 4 medical departments involving 40 healthcare professionals. The interconnected PHR is being now used by some citizens as test users and it will be soon scaled to all the users of the former EHR. The new regional eReferral service has now started and represents the first module of the shared EHR platform of the Veneto Region. It will enable the new online booking service developed in Asolo under the Sustains project to be integrated in the regional EHR.

Briefing Paper accepted by EU countries

On a political level, the SUSTAINS project prepared, together with the eHealth Governance Initiative, a Briefing Paper which was accepted by the eHealth Network: eHealth representatives of all EU Member States.

The paper made recommendations regarding patient health records and, notably, patient access to health data. It recommended that access to patient data should be about making health data meaningful and understandable. It is about moving patient access from the paper-based world to the digital world and about generating added value of integrated health information portals.

Creating convergence at national level can also enhance and support access to patient data across borders or despite borders.


The aims of the SUSTAINS project (jointly funded by the partner organisations and the European Union) are to:

  • Empower patients by giving them access to their Electronic Health Record (EHR) and other online services;
  • Enhance the quality of care by developing the partnership between the patient and the healthcare professional;
  • Increase efficiency and economy through access to the EHR;
  • Build upon existing experience;
  • Understand the legal and ethical aspects of access to the electronic record;
  • Measure the impact and satisfaction levels across citizens, patients and healthcare professionals with such services.

Project website:

Details of all SUSTAINS pilots, services and other information is available here, under "Dissemination – Downloads".

Further information (including requests for interviews) can be obtained from