February: data use registers
Our first Data Access and Discovery webinar was on data use registers.
Nada Karrar, our Project Manager for Data Access Registers at HDR UK, spoke about our work so far on developing a set of standards for data use registers to help improve transparency in the use of health data for research.
We also heard the perspectives of Angela Coulter (our Public Advisory Board Chair) and Victoria Yorke-Edwards (Research Fellow at MRC Clinical Trials Unit UCL) – both of whom were involved in developing the recommended standards.
These standards have now been implemented the through the development of the Gateway data use register.
The theme for April was Trusted Research Environments.
We hosted in partnership with NHS Transformation Directorate to highlight how recent developments around the use of Trusted Research Environments (TREs) is ensuring safe and secure access to health data for research.
Guest speakers and panellists included Nicola Brassington (Deputy Director of Data and Analytics at NHSTD), Ben Goldacre (Director of the Bennett Institute) and Bradley Quinn (Health Innovation Manchester).
The session was chaired Tim Hubbard, Professor of Bioinformatics at King’s College London and co-author of the paper: Principles and Best Practices, Towards TRE Ecosystems.
June: reproducible data science
Our June Data Access and Discovery webinar was training-focussed and was hosted by our Head of Training at HDR UK, Rosie Wakeham.
Rosie was joined by Heidi Seibold – former researcher turned open science trainer and consultant – who spoke about reproducible data science and the first steps towards a gold standard, including her brilliant ‘research companion’ concept. Heidi also shared her best tips and tools for staying digitally organised when it comes to the reproducibility pipeline.
August: Gateway workshop
This month we ran an interactive feedback style workshop on the Health Data Research Innovation Gateway – the UK’s unified platform to discover and access health datasets for research.
We started with a short survey to understand the current level of awareness and engagement with the Gateway amongst our attendees. Next, Gerry Reilly (HDR UK’s Special Technology Advisor) delivered a brief overview of the Gateway, covering its past, present and future milestones.
We then split our attendees into four breakout rooms for a collaborative virtual whiteboard session with each room working through the same activities led by a HDR UK staff members.
The workshop was a brilliant opportunity to hear and learn directly from Gateway users – we enjoyed the conversations and the findings gathered with will help us to improve the Gateway experience for everyone.
October: the charity sector
Our final Data Access and Discovery webinar of 2022 focussed on charitable organisations and how they’re embracing the power of health data to progress research. We invited the British Heart Foundation Data Science Centre and the Brain Tumour Charity along to discuss their work in this area.
John Nolan, Senior Health Data Scientist at the BHF Data Science Centre discussed the work of their health data science team, focusing on how they support the work of the CVD-COVID-UK/COVID-IMPACT Consortium.
Fiachra Woodman, Chief Technology Officer at the Brain Tumour Charity, spoke about the Brian app, which has revolutionised how patients and carers record Patient Recorded Outcome Measures (PROMS) data and collaborate as a community.
See you in 2023
Our Data Access and Discovery webinar series will be back in the New Year. Sign up to the Gateway newsletter now to stay updated.
A huge thank you to all our speakers, panellists, chairs, hosts and organisers for their support in making the series a great success. And special thanks to everyone that attended these sessions – we hope to see you again soon!
If you have any feedback, comments or questions about the Data Access and Discovery webinar series in general – including ideas for future themes – please reach out to our Gateway Community Lead, Ruth Milne.
Discover Data on the Gateway
The Health Data Research Innovation Gateway (the 'Gateway') search engine or 'portal' provides a common entry point for researchers and innovators to discover and request access to health...
Trusted Research Environments
We are committed to enabling the trustworthy use of health data for research. Throughout the COVID-19 pandemic, we have championed and led the use of Trusted Research Environments (also known as...