Almost 400 academics from across the UK have signed an open letter calling for improved access to health and other administrative data for research. The authors of the letter, published in the British Medical Journal today (6 July 2020), make several recommendations for how this could be done, citing lessons learnt during the Covid-19 pandemic.
The recomendations include:
- reducing the costs of administrative data access to researchers;
- simplifying approvals processes for de-identified data access;
- reducing data release delays through increased capacity;
- and enabling more efficient data access through remote systems.
The letter’s recommendations are addressed to the Information Commissioner’s Office, UK Chief Medical Officers and UK Government departments, as well as secure data access providers – some of which are ADR UK (Administrative Data Research UK) partners.
Commenting on the letter, Dr Emma Gordon, Director of ADR UK, said: “Administrative data is an invaluable resource for public good, and our mission is to harness its potential in a safe and responsible way. As such, we welcome this letter from the research community, highlighting the importance of timely and efficient access to data, during the Covid-19 pandemic and beyond.
“This is a moment at which administrative data research is really coming into its own, as shown by the huge amount of work going on across the ADR UK partnership to enable targeted responses to Covid-19. This data will only continue to grow in importance as we seek to understand and address the pandemic’s long term effects on the economy and society.
“As we move forward, it is essential that we continue to provide research access to de-identified data in a way that is supported by the public. ADR UK’s infrastructure, and that of our data processing partners, provides an existing best-practice framework for doing so, ensuring that people’s data is safe from misuse, and only used proportionately for projects in the public interest. We are working with government to expand access to a rapidly growing portfolio of linked public sector data, both at a UK-level and in the devolved administrations, with new data acquisitions being made on a regular basis. This includes making UK Government and Office for National Statistics (ONS) datasets available via the secure research environments in all four UK nations.”
“The recommendations made in this letter are sensible and desirable, and ADR UK data processing partners are working hard on relevant improvements. Thanks to ADR UK funding, the ONS is significantly increasing the processing capacity of its Secure Research Service, and has recently launched a streamlined online Research Accreditation Service, all without imposing data access charges on researchers. Partners are also working on extending secure remote access, building on years of experience doing so safely at the SAIL Databank, part of ADR Wales.”