Developing resources to explain Trusted Research Environments and Secure Data Environments to patients and the public
Background
Many organisations that have Trusted Research Environments (TREs), Secure Data Environments (SDEs), and other similar environments have public-facing information about their product. However, there is a lack of independent, non-organisation-specific resources that can be used by anyone. There is also limited evidence on how people feel about these environments in general, and what they would like to know about them.
The purpose of the What Words To Use project is to:
- Gain insight into members of the public’s understanding of TREs, SDEs, and other similar data spaces that are used to access health data for research and analysis, and associated concepts (such as federation)
- Consider members of the public’s feelings towards these topics
- Co-develop specifications for public-facing resources based on the above, with the type of resource being recommended by the workshop participants
- Produce the necessary resources
This project was launched in September 2023, and our chosen supplier Research Works started work in December 2023. The process will be broken down into key stages of:
- A rapid review synthesizing the existing evidence on key concepts
- Co-creation workshops for the resources with the public, health and care professionals and stakeholders
- Finalising outputs including workshop reports and specifications for resources
Stage 1 - Rapid Review
This rapid evidence review is the first output of this project. Its objectives are to:
- Synthesize existing evidence and provide context for this research
- Inform research stimulus for co-creation sessions Identify gaps to be explored in the co-creation workshops
The rapid review covers:
- Key findings about the understanding of TREs, SDEs and data spaces
- Recommendations for explaining TREs, SDEs and data spaces
- Challenges in communicating about TREs, SDEs and data spaces
- Evidence Gaps
We hope that this rapid evidence review will be useful for others working in this space at a local, regional, national and international level.
Read the full rapid review here
Next steps
The next steps involve a series of in-person and online workshops. The first set of workshops will include an introduction to the use of health data and key concepts, including TREs, and testing some existing resources as a stimulus. The second set of workshops will be more co-creation focused, developing recommendations for resources and identifying specifics like language choice, resource type, and style.
These recommendations and specifications will then be tested further with members of the public, health and care professionals, and key stakeholder.
We aim to hopefully share the outputs of this stage by late March / early April.