Governance of patient registries

Patient registries, which were designed for patients with shared characteristics, have been an important source of the data needed to assess clinical performance, provide health technology assessment or assess policy implications on a local, regional, national and in some cases international level. As a result, hundreds of registries have been set up, ranging from paper based spread-sheets in a physician’s office to international rare disease initiatives coupling clinical and genetic data as well as bio-banks.
In the last fifteen years information technology has enabled clinicians to collect, share, compare and analyse large amounts of patient data.
A recent EU-funded project has produced a set of Guidelines to provide practical advice on how to set up and manage patient registries as well as to enable secondary use of data for public health policy and research. These Guidelines should make life easier for those setting up new registries or redesigning already functioning registries and those exchanging data across registries.
To read the full 232 page Guidelines on the website

European eHealth Network

The Joint Action to support the eHealth Network (JAseHN) was launched in 2015 and is now in the process of setting up a cross-border network to exchange Patient Summaries and ePrescriptions, by focusing on the following objectives:

  • enable seamless cross-border care and secure access to patient health information between European healthcare systems, particularly with respect to the exchange of Patient Summary and ePrescription.
  • contribute to patient safety by reducing the frequency of medical errors and by providing quick access to patient health information, as well as by increasing the accessibility of a patient’s own prescriptions, also when abroad.
  • provide medical personnel with life-saving information in emergency situations and reduce the repetition of diagnostic procedures.

To read more about JAseHN and download their leaflet from the website

E-health in practice

A new report gives an overview of the developments and benefits of using e-health, with 29 cases from across the European Region.

E-health is a broad concept, defined as the use of electronic means to deliver information, resources and services related to health. Many terms are included in e-health, such as:

  • electronic health records;
  • mobile health, or m-health;
  • telehealth or telemedicine;
  • health-related e-learning;
  • social media for health;
  • health data analysis and “big data”

The following examples illustrate different uses of e-health:

Improving appointment systems in the former Yugoslav Republic of Macedonia

Before 2011, patients in Skopje experienced long waiting times to see doctors and have diagnostic tests. The MojTermin (My Time) system made it possible to book appointments online and receive text message reminders and for decision-makers to access a live dashboard to see referrals, prescriptions and requests in real time. The system was so successful in reducing waiting times that it rapidly expanded from a pilot project to become a key part of public and private health care in the former Yugoslav Republic of Macedonia.

First nationwide electronic health record system 

Estonia launched its electronic record system in 2008, becoming the first country in the world to fully implement such a system nationwide, with records covering an individual’s medical history from birth to death. Information on the health of 1.35 million people (98% of the population) is now in the system, and e-prescriptions account for 98% of all prescriptions issued. The electronic record system forms part of the broader eEstonia electronic public services, which, in addition to e-health, include e-taxes, e-schools, e-commercial registries and e-elections.

Training medical students in using a multilingual, virtual, simulated patient

11 countries in the Region have created a multilingual, virtual, simulated “patient” that responds and behaves in the same way as a real patient being seen in a primary care setting. It can be used by medical students in different countries with different languages. The system simulates a clinical interview with a virtual patient presenting with symptoms of one or a combination of illnesses.

To read the report From Innovation to Implementation on the website

eHealth guidelines for nurses

The EU-funded Ens4Care project has developed five guidelines for European nurses and social workers on how to use eHealth for:

  • promoting a healthy lifestyle and prevention
  • clinical practice
  • skills development for advanced roles
  • integrated care
  • nurse ePrescribing.

The ENS4Care network brought together 24 partners from all over Europe, with a mix of professional associations in nursing and social care, nursing regulators and unions, informal carers, patients, researchers and research communities, civil society representatives and industry. They collected a total of 122 existing good practices of using eHealth tools by nurses and social workers at both national and regional levels.

To find out more about the eHealth Guidelines and the project itself, on the website

E-health in Europe – from innovation to implementation

This report describes the development of e-health in the WHO European Region and the trends that are emerging in 2016. It is based largely on data collected from the 2015 WHO Global eHealth Survey.

It includes case studies of successful implementations in various countries and the practical application of e-health in various settings. It provides evidence of an increasing appetite for e-health and indicates tangible progress in the mainstreaming of technology solutions across the European Region to improve public health and health-service delivery.

To read “From innovation to implementation – eHealth in the WHO European Region” on the website.

Smart ageing prize

AAL (previously known as Ambient Assisted Living) has launched its Smart Ageing Prize – a €50,000 Challenge Prize to find the best innovation in internet connected devices and technologies (Internet of Things) that will empower older adults to achieve the quality of life they aspire to socially and independently.

The Prize aims to find innovations that improve connectivity between older adults, devices and technologies related to any aspect of their life (e.g. home, social, work, study, transport or services). The idea should present a business opportunity which has the potential to be commercially viable. Applications must involve older adults in the development and testing of the technology.

AAL will help the most innovative ideas turn into real products that can be financially sustainable. Fifteen of the most promising applications will be chosen as Finalists and will be invited to a social innovation mentoring academy in Brussels in July to progress their ideas. Each of the Finalists will be awarded a €500 grant to develop a prototype to demonstrate at the Academy.

The winner will be awarded a prize of €50,000 at the AAL Forum in Switzerland in late September (
The Prize is open to individuals, groups and organisations in the 28 member countries of the European Union, as well as Israel, Canada, Norway and Switzerland. The deadline for applications is Friday 13 May 2016 at Midday (12pm) Central European Time.

For more information about the Smart Ageing Prize, on the website.

Global survey of assistive technology

The World Health Organization (WHO) has launched a global survey to gather views on the most necessary and useful assistive technologies such as hearing aids, wheel chairs and personal alarms.

The survey will feed into the first ever WHO mandated list of essential assistive technologies to provide a tool for governments. Governments can use the list to plan and focus efforts to help populations acquire the 50 priority products, thereby improving the everyday lives of the elderly and people with disabilities.

These practical tools – some low, some higher technologies – are becoming increasingly necessary to the many people in high- and middle-income countries who are living longer due to better healthcare. Similar devices are used by people with disabilities, allowing them to live more autonomously and participate in their communities.

However, such tools are not readily available everywhere. WHO estimates that only 1 out of 10 people who need these vital supports are accessing them today, due to lack of availability and awareness, and high costs. The aim is to increase access to assistive technologies for 1 billion people who need them today, and to reach 1.5 billion by 2030.

To read more about the survey and, if you wish, take part on the website

Ethical Aspects of E-health

ethical aspects of ehealth logoSeptember 2015. This seminar looked at the ethical aspects of successfully implementing new technologies with the elderly and those with mental or physical impairments.

With speakers from the private and public sectors the afternoon gave practical examples of why patients need to be kept in the forefront of innovators’ minds if e-technology is to be fully utilised.

The programme includes the speakers’ biographies and the  presentation gives clear examples of the issues involved.

European Momentum for mainstreaming telemedicine deployment

The Momentum project is a three-year initiative co-funded by the European Commission to create a platform where key players in telemedicine can share their knowledge and experience in deploying telemedicine services into routine care.

Working together, these key players have defined a Blueprint that offers critical success factors and performance indicators that help decision makers scale up healthcare services from a distance through information technology.

Moreover, it delivers a self-assessment toolkit that helps an organisation determine whether it is ready for telemedicine deployment.

To read the Momentum Blueprint, click here on

For further information about the Momentum Project, please click here on