Insights from the UK Health Data Research Alliance — on ethical use of health data


The UK Health Data Research Alliance (the ‘Alliance’) is an independent alliance of leading healthcare and research organisations united to establish best practice for the ethical use of UK health data for research at scale.


About

Welcome to the UK Health Data Research Alliance — an independent alliance of leading healthcare and research organisations united to establish best practice for the ethical use of UK health data for research at scale.

We develop and co-ordinate the adoption of tools, techniques, conventions, technologies, and designs that enable the use of health data in a trustworthy and ethical way for research and innovation.

By combining expertise and a shared commitment to work collaboratively, we are helping researchers to answer some of the most difficult questions and address the most important health challenges faced in the UK.

The Alliance is part of the UK-wide capability for the responsible use of health data for research and innovation, funded by the Industrial Strategy Challenge Fund (ISCF).


What are we trying to achieve?


We aim to accelerate progress in health and care by encouraging widespread and responsible access to structured and unstructured clinical, administrative, imaging, genomic and other molecular data.


We aim to accelerate progress in health and care by encouraging widespread and responsible access to structured and unstructured clinical, administrative, imaging, genomic and other molecular data.


Why do we need the Alliance?


The UK has some of the richest health and research datasets and assets world-wide. 

Some of these are well organised, but only a fraction of all NHS and research data is accessible. 

This makes it difficult to realise the full potential and value from the data, which slows down the development of new treatments, innovation and progress towards a more efficient health and social care service.

For researchers and innovators to benefit from secure access to an array of health-related data and address health problems, we need the right expertise, trusted governance, and collaboration through a UK-wide research alliance.


How are we doing it?


Through the development and sharing of best practice, and by earning trust in health data use, the Alliance aims to maximise research potential and ensure it benefits as many people across the UK as possible.

We are:

  • Bringing together the research, clinical, and disease advocacy communities, patients and the public, and the private sector to support and promote the responsible sharing of health data for research and innovation
  • Collaborating to create a versatile information platform that is open and accessible, and provides common standards, formats and tools to stakeholders in the health data research community; and,
  • Publishing a series of Green and White papers on key work areas for consultation and to help shape developments to create a responsible and ethical infrastructure for health data research and innovation in the UK.

Who are we?


We are an independent, not-for-profit alliance of health data custodians from some of the UK’s leading health and research organisations

The Alliance Board is composed of senior leaders from these organisations. An International Council of Reference advises the Alliance Board in relation to ethics and information governance.

The UK Health Data Research Alliance is co-ordinated by Health Data Research UK and was formally launched on 7 February 2019.

Other custodians of large-scale health data are warmly welcomed to join the Alliance to widen the opportunities for medical breakthroughs.

Find out more about our work here


Originally published at https://ukhealthdata.org.


UK Health Data Members (link)Members
The UK Health Data Research Alliance (the ‘Alliance’) is an independent alliance of leading healthcare and research…ukhealthdata.org

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