TASK FORCES

Interoperability and standards

Led by Catherine Chronaki, HL7 Foundation, this group includes National Ministries of Health and associated agencies, Regional Governments, Standards organisations, Industry representatives, Researchers, Patients’ groups, Health Professionals, CIOs/CCIOs and Health IT managers and experts.

The main objective is to promote the alignment and the convergence of national and regional eHealth interoperability strategies.

It covers both technical and semantic interoperability. It is a strong component of the Digital Single Market and it would facilitate the cross-border exchanges of data and a seamless experience of healthcare services for citizens across Europe.

The Task Force aims to facilitate sharing good practices and lessons learnt around interoperability and standards, the effect that they have on real life and routine care and what can be done to adopt and adapt them in a different place.

This aim is fulfilled by identifying promising practices and success stories and arrange dedicated webinars to share and discuss them with promoters and potential adopters.

Currently, the Task Force webinar series includes the following topics:

  • Interoperability in maternal and child care, held 2nd October 2017. Download webinar slides here and Watch the recorded Webinar here
  • Standards for mhealth app review, to be scheduled in the first quarter of 2020.
  • Standards for integrated care, to be scheduled in the second quarter of 2020.

The Task Force 1 is open to any innovator interested in promoting a collective reflection on the processes of creation of new standards and foster a stronger connection with needs and challenges faced by innovators and implementers “on the ground”.

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Collect good practices and lessons learnt about interoperability standards implementation and use-cases (sources from public sector, industry, standards organisations, researchers…)

Organise webinars and workshops.

CITIZEN CONTROLLED DATA GOVERNANCE AND DATA DONORS

Led by Angela Brand, Professor at the University of Maastricht see short bio here, this Task Force gathers a large range of stakeholders: policy-makers, industry representatives researchers, patients groups, payers, etc.

This Task Force will promote and develop innovative citizen-controlled data governance models, such as health cooperatives, and raise awareness within the European society about the benefits of sharing data, through communication campaigns and a specific work around the Data Donors concept. Data is not limited to healthcare systems data but refers also to Social Care and other Personal Data.

New approaches should be developed to ensure the EU citizens the control of their personal data and its safety and security. The role of Member states and regions should not be to compete with the private initiative but define a framework and data governance principles. Several initiatives have emerged recently in Europe, sometimes led by the public sector, sometimes private or citizens’ initiatives in order to offer solutions for such a control. It is now important to bring together these initiatives together in order to collect the proof of concept and define best practices and principles or guidelines.

Trust is a major stake. Governments and citizens groups can secure these new models but also technologies, such as Blockchain, could help to build trust bringing more(cyber-)security around personal data. The right balance between regulation and innovation should be defined. Incentives for citizens to share their personal data is also a challenge. A significant work has to be done on the “monetisation” models, not only around financial incentives but also around free services that could be provided to the citizen, bringing her/him actionable information based on her/his data, in order to (self-)manage her/his health and wellbeing.

We should also raise awareness about the benefits of data sharing for research purpose and healthcare services improvement, such as it has been done around blood or organs donation. Large campaigns could be designed to invite and motivate the society to participate to this data-driven innovation process. Ensuring security of these personal data, the openness of such systems should be also ensured to make them available (with anonymization processes) for research and innovation. These initiatives should also integrate dynamic consent models, engaging a continuous dialog with citizens.

Identify existing key principles for citizen-controlled Data governance.

Identify existing initiatives including citizen-controlled data governance principles, such as health cooperatives, and federate these initiatives in a EU network to share best practices and work on best-in-class models.

Design and stimulate the creation of third parties non-profit bodies (such as health cooperatives) ensuring the citizens’ control, in complementarity of the private sector’s initiatives.

Define the “monetisation” / incentives models, rewards and incentives for citizens to share their data and make them available for health and social care services improvement and research purpose.

Data Donors campaigns: raise awareness about the benefits of data sharing, build communication campaigns and disseminate across the EU.

Support the work carried out by ECHAlliance in the “DigitalHealthEurope” project which is aimed to study innovative citizen controlled data governance models and data donation concepts and incentives with the final goal to produce recommendations feeding into the vision for digital transformation of health and social care beyond 2020.

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legal Framework for the free flow and
secondary use of health and care data

Led by Bleddyn Rees, Lawyer and digital health expert at Osbourne Clarke see short bio here, this Task Force bring together lawyers, legal experts, policy-makers and industry representatives.

The Legal Framework around health data management is a competence of each Member state. Therefore, the harmonisation of these legal frameworks should be a collaborative work between Member states and regions across Europe. One of the main challenge is to enable cross-border exchanges of data between EU countries and regions. This would provide benefits for research but also for the implementation of innovative practices and solutions leading to health and social care services improvement.

The starting point of the TF3 work is the General Data Protection Regulation (GDPR), entering in force next may 2018. The Member states are currently working on the implementation of this regulation into their national framework. This represents an important challenge for administrations, health and social care providers and the industry. In particular, the concept of the individual consent which is a strong element of GDPR requires some work at the legal and technological level. The Task Force 3 aims to develop new principles ensuring a common framework, for Member states and regions to sign up to.

Create a EU health and care Data convention establishing the principles of a legal framework facilitating the Free Flow and secondary use of health data;

Define (and create) the ad-hoc organisation managing the EU convention;

Promote the convention and invite adopters (MS/regions);

Set up working groups involving international lawyers, industry, citizen/patients groups, health professionals, legal departments of health system and hospitals…

Publish a report about the principles for a Legal Framework facilitating the free flow and second use of health data.

Publish a paper analysing how the European Patent Convention is structured and operates.

Publish a paper outlining the structure and functions of a European Health and Care Data Convention.

Identify early-adopters (MS, regions) and design the European Health and Care Data Convention and identify early-adopters

Feasibility study of a pan-European Dynamic Consent Patient Registry

digital Transformation and change management
in health and social care orgAnisations

Led by Jane Carolan, National Director at Health Service Executive (HSE) in Ireland, this Task Force gathers managers of health and social care services at national/regional level, disruptive innovators and industry actors who are leading processes of change management and digital transformation of their organisation.

Enable digital transformation and change management in health and social care organisations across the EU.

Create a platform for health and social care managers to facilitate knowledge and good practices’ exchange and identify champions and potential game-changers.

Digital skills for health and social care workforce: bring together existing EU initiatives for digital training of health/social care professionals (such as NHS Digital health academy)

Collect good practices and lessons learnt about digital transformation and change management in health and social care.

Facilitate alignment and cross-fertilization among initiatives aimed to reinforce digital skills and innovation readiness in health and social care workforce.

Organise webinars and workshops.

If you are interested in this task force, sign in to receive updated information here

Contact

Connected Health Alliance CIC
13A Ballyhoy Avenue
Dublin 5
Ireland

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