We were pleased to attend the event ‘Joined up thinking for data access’ on Tuesday 28 February, which was organised by the BIA, the Association of Medical Research Charities (AMRC) and LifeArc, and focused on collaborating for data access, taking a cross-sector view of the current challenges, and highlighting successful case studies to enable a more joined-up approach to data access for R&D in the UK.
In the morning, we heard updates from NHS England on their programme for moving from data sharing to data access, enabled by the set-up of a national Secure Data Environment (SDE) and a network of 11 coordinated sub-national SDEs to be delivered by 2025.
A panel discussion brought together leaders from the charity and industry sectors to highlight successes and challenges in health data access from the perspective of data custodians and potential data users.
Case studies were presented by LifeArc, Palantir and Cancer Research UK (CRUK). LifeArc outlined their work in improving data access to registries and supporting charities to connect with industry partners.
CRUK reported on their approach to identifying and addressing data access barriers, and Palantir presented their work with NHS England in supporting the Covid response through technology and data integrations.
The round-table discussions in the afternoon were lively and insightful, providing an opportunity for all attendees to contribute their perspectives on barriers to data access, and how to overcome them, and to share examples of good practice and learnings.
Fittingly for a meeting taking place on Rare Disease Day, challenges and success stories in rare disease research were also featured.
Emerging themes from the day included the imperative to build from good patient and public engagement when starting to develop any data access strategy or research project.
Success stories emphasized transparency and a continuing two-way conversation from planning through to feeding back the results of research to participants and patient communities.
Challenges to fostering good collaboration between charities and industry were identified to include making data discoverable, bringing together the right collaborators at the right time, and increasing the efficiency of setting up collaborations.
Working together to improve clarity, consistency, and predictability in data access processes was identified as a key objective for organisations providing health data for research.
Overall, the event highlighted enthusiasm to improve and expand on collaborations towards a shared goal of translating health data into improvements in disease prevention, diagnosis, and care.
Thank you to the BIA, AMRC and LifeArc for putting together an engaging, interactive, and thought-provoking event.
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