Bridging the gap between research and healthcare

Health Data Research UK (HDR UK) and the Global Alliance for Genomics and Health (GA4GH) have announced a strategic partnership to expand existing open standards work and collaborate in the wider health data space. Together, both organisations plan to learn from global partners and promote adoption of health data related standards around the world.

GA4GH is an international community of hundreds of leading organisations in healthcare, patient advocacy, research, ethics, government, life science, and information technology working together to advance human health through genomic data. Its members develop technical standards, policy frameworks and tools to expand the responsible and secure use of genomic and related health data for the benefit of human health.

The partnership with HDR UK marks GA4GH’s first strategic relationship with a health data research organisation. GA4GH CEO Peter Goodhand announced the partnership on 6 March 2024 at the HDR UK annual conference.

“There’s a history of genomic data sharing for research, dating back to 1990 with the launch of the Human Genome Project,” said Goodhand. “But to truly realise the promise of precision medicine, we must enable responsible and ethical use of health data as well. By partnering with HDR UK, we can make strides towards bridging the gap between research and healthcare.”

“We are excited to work more closely with GA4GH,” said Andrew Morris, Director of HDR UK. “Standards are critical in the analysis of large-scale datasets, enabling collaboration and enhancing reproducibility to deliver innovative research for public benefit”.

As the UK’s national institute for health data science, HDR UK works to accelerate trustworthy data use to enable discoveries that improve people’s lives. Working in partnership with the National Health Service (NHS), universities, research institutes, charities, industry, and patient and public groups, HDR UK is helping to assemble the infrastructure needed to allow researchers to securely discover, access, and analyse this information.

“Partnering with GA4GH can help accelerate this work,” said Neil Postlethwaite, Technical Director at HDR UK. “We believe there’s much we can learn from each other to develop the tools, techniques, and open standards-based approaches needed to work with health data in a trustworthy fashion both within the UK and beyond.”

Data standards fit for an international community

For many years, HDR UK has been an active participant within GA4GH. The HDR UK community has contributed to GA4GH products, including the Ethical Preparedness for Pandemics and Epidemics Framework and Experiments Metadata. The team is also actively involved in the GA4GH Infectious Disease Community of Interest.

In addition, HDR UK used the GA4GH Framework for Responsible Sharing of Genomic and Health-Related Data and Strategic Road Map as templates for establishing the UK Health Data Research Alliance and its principles for participation.

The partnership provides mutual benefits to HDR UK and GA4GH. HDR UK offers GA4GH a key connection to the UK’s health data landscape, an area that is underrepresented within the GA4GH community but essential to driving its mission forward. The strategic partnership also brings HDR UK’s international and global south collaborators to GA4GH, ensuring that GA4GH standards are fit for purpose for the international community.

In turn, GA4GH links HDR UK to standards used by the genomics community. GA4GH will support HDR UK into expanding its existing open standards work and facilitating collaboration with other organisations and initiatives in the health space.

“Realising the full transformative potential of health-related datasets is a significant challenge, requiring partnership on a global scale,” said Morris.

Goodhand agreed. “International collaboration is paramount to this effort. By making strides to unite genomic and health data, we can truly enable a global learning health system.”

Further information