In recent years, particularly following the Covid-19 pandemic, there has been an increase in the use of large-scale datasets for health analysis and research. In addition to this, there has been a drive towards accessing health datasets through specific types of data environments often referred to as Trusted Research Environments (TREs) and Secure Data Environments (SDEs). Some of these environments have already existed for years, for example, the SAIL Databank or the Genomics England Trusted Research Environment, but there is also now a strong governmental commitment to the use of such platforms, following the Goldacre Review, Data Saves Lives strategy, the policy guidelines for secure data environments for NHS health and social care data, and the draft data access policy. These policy commitments have also led to the creation of the Data for Research and Development Programme in NHS England, which is making England-wide investments in Secure Data Environments and has established the NHS Research Secure Data Environment Network. UPD receives some of its funding from this programme.
However, there is currently a lack of clear, factual information on what these environments are, how people feel about them and the language that is used in relation to them (and in relation to the uses of the data), and what can be done to improve public trust. Similarly, there are a lack of independent, non-organisation specific resources that can be used by members of the public, data owners, researchers, healthcare professionals to explain these topics.
This project is the first part of a two-stage programme, consisting of desk research and co-development of specifications for resources. Following on from this project the plan is to have a second project, which develops the necessary resources.
We anticipate the project will run from the beginning of December 2023 to the end of March 2024. The deadline for submissions is midday 2nd October 2023, but there is also a period to register your interest so that we can share communications and relevant Q&A with interested organisations. The deadline for registering interest is 18th September 2023. You do not have to register your interest in order to make a submission, but it may help with receiving any updates.
Please see the document attached for further information, and if you have any questions please contact hello@understandingpatientdata.org.uk, and our team can assist you further.
We are looking forward to seeing the range of ideas and approaches we receive.