Digital Healthcare Data Federation

The Digital Healthcare Data Federation brings together partners from across Europe to support improvements in health and healthcare through the use of data.

Many of the world’s healthcare systems are under strain. A combination of factors including ageing populations, new healthcare technologies, the genomics revolution and financial constraint mean there are increasing pressures to achieve more and better care with static, or even reducing, levels of resource. Health and care services need to be optimised to meet future demand and this requires a closer coupling of service delivery and research.

However, there is great opportunity. Increasing volumes of data and information generated through the provision and administration of health and care can provide valuable assets that could be used to develop effective and efficient services. Delivering high impact from these assets requires collaboration across many internal and external stakeholders from clinicians to patients, technology suppliers to ethics committees and beyond.

The Digital Healthcare Data Federation (DHDF) brings together collaborators from across European health jurisdictions to enable:

  • the generation of new knowledge and evaluation of existing interventions, medicines and technologies through cutting edge research across multiple sites with large populations,
  • improved understanding of efficiency and effectiveness in healthcare by comparison across countries and regions,
  • members to develop their data maturity through learning from best practice and experience across the federation network.


Customer Ecosystem


At launch the Federation will consist of two closely aligned elements:

This will be a set of (primarily European) organisations that have agreed to collaborate to support research and evaluation studies that are beneficial to their populations. It is anticipated that the network will provide initial access to commission experiments on de-identified data relating to ~35 million people from across multiple international jurisdictions. Our ambition is to grow the network across Europe and beyond to increase the value that could be delivered to members, citizens and customers.

The protection of patients’ personal information and privacy is central to the design of the Federation. All data remain under the control of the local healthcare providers at all times with data analysis co-ordinated on a distributed basis leveraging technology developed by project partners. This allows each healthcare provider to follow local information and data security regulations while still participating in valuable cutting edge research, without the need to provision a single data repository to store atomic records.


This will be a not-for-profit organisation that acts as the interface between federation members and customers (industry to the public sector and academia) commissioning experiments. The broker supports customers from initial enquiry through to the provision of project results. Key functions include:

  • marketing of the service,
  • understanding customers’ requirements and conducting initial assessments of study feasibility; including study design, likely available sample sizes, comparability of data across healthcare providers,
  • liaison with local healthcare providers to find out how many members wish to take part in the study,
  • pricing and completing commercial contracts with the customer,
  • receiving study results from local healthcare jurisdictions,
  • delivery of reports to customers.



How the Federation Works




Who can use the Federation?


Customers wishing to discuss or commission research using the healthcare data available via Federation members should make initial contact. In the first instance we will:

  • understand the scope and detail of the request and provide advice on the data that are available in different regions and countries,
  • help you think through the project logistics and likely timeframes for the project,
  • make contact with the regions and countries to confirm which areas would like to support the proposed project.

We welcome enquiries from all sectors and types of organisations; customers may be from the healthcare industry or pharmaceutical companies, academic researchers, or the wider public sector.

* Please note that the Federation is due to launch in January 2018 but is currently looking to work with customers on initial pilot projects.


Joining the Federation


The Federation welcomes membership applications from all healthcare providers.

Membership of the Federation offers the following benefits:

Access to experts and services relating to:

  • data collection and storage,
  • data security and access,
  • information governance,
  • statistical analysis.

The opportunity to:

  • contribute to large scale world leading research,
  • payment for contributing to commissioned projects,
  • access research findings from studies undertaken using the Federation (within contractual limits),
  • use comparative information to learn from the best healthcare practices across Europe, including access to experts and services relating to data management, security, governance and analytics.

The Federation will also collectively agree to deliver one important health services experiment each year that will be answered using the Federation and Broker resources. These projects will provide comparative information across the Federation with findings available free of charge to members.

Please note that joining the Federation is free and there is no obligation to take part in all research projects. Federation members choose to take part in research projects on a project by project basis. All local information governance procedures remain in place and are not affected by Federation membership.

To discuss membership of the Federation please contact us.


Partners


The Data Lab

EIT

Universita Di Trento


Azienda Provinciale per i Servizi Sanitari Trento

Engineering

ISD Scotland

Usher Institute

Reply


Contact us:

DHDF@thedatalab.com


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