What Words To Use

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

This project was launched in September 2023, and our chosen supplier Research Works started work in December 2023. The process was 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

The rapid evidence review was the first output of this project. Its objectives were 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

Stage 2 - Public engagement workshops

The next steps involved a series of in-person and online workshops. The first set of workshops included 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 were more co-creation focused, developing recommendations for resources and identifying specifics like language choice, resource type, and style. In total 16 workshops were conducted with 50 members of the public from across the UK (including a mixture of gender, ethnicity, age, disability, socioeconomic status and those who are digitally excluded), alongside 8 interviews with experts in the use of health data.

Key findings included:

  • Generally, members of the public are supportive of the move to using TREs and SDEs.
  • There are six core topics that public participants want included in any resource describing SDEs or TREs: why data is used for purposes other than direct care; the fact that data is de-identified prior to access; data in SDEs and TREs is accessed not shared; a transparent description of who is accessing the data; how the data is kept secure; and he benefits of using SDEs and TREs.  
  • An SDE/TRE resource should contain layers of detail to meet the different information needs of the public - a 1-line summary, a main resource containing the core messages above in an animation form, and links to further detail for those who seek it.  
  • Many participants did not want significant amounts of information in a resource. However, they did want the ability to find further information if needed.

Limitations and difficulties:

  • There isn’t yet a common, agreed definition for TREs and SDEs, nor 100% acceptance that they are the same thing or different things, particularly in terms of public communication.
  • There is a breadth of technical differences and definitions between individual SDEs and TREs that make high level generalisations difficult.
  • An evolving and changing policy landscape means resources will likely need to evolve with it over time.
  • The balance between transparency and clarity is difficult, particularly when it comes to the detail of what’s meant by pseudonymisation/de-identified data
  • Public participants often wanted to be reassured, but this isn’t UPD’s role. Reassurance should be provided by individual TRE and SDE providers.

Findings from the workshops led to recommendations for a three-tier resource with differing levels of detail: a brief description; a 2-3 minute animation video; and a more detailed resource with links to further information on specific topics for those who are interested. Participants in the workshops co-created the language and contents for each of these resources, and developed a script and storyboard for the animation.

The final report is designed to support the development of an umbrella resource describing SDEs and TREs as well as support other organisations when creating their own resources. 

Read the full public engagement report here.

Download the research

Full reports

Discussion Guides

Stimulus Materials

Next steps - Resource production

We are currently deciding on a supplier to produce the animation, with the aim of having this finished and shared by the end of summer 2024.

We will also work on developing the other resources alongside this.

 

If you have any questions or would like to discuss this research further, please email us at hello@understandingpatientdata.org.uk