Patient Data and Metabolic Research

Call overview and agenda

An online discussion exploring the use of the Wynn Database for metabolic research was hosted on Thursday 29 July 2021 (5pm to 6.30pm) via Zoom Pro and was attended by 18 members of the public with lived experience of metabolic disease who broadly represented the demographics and patient groups of individuals whose data is within the Wynn Database

The aim of this particular online session was to:

• Introduce the use of patient data in research (including concepts of consent, anonymisation and data linkage)
• Introduce and provide an overview, of the Wynn Database
• Give attendees an opportunity to ask questions
• Facilitate small group discussions around the acceptability of using the Wynn Database for further research and views on involving patients and the public going forward 

Key Insights Summary

Attendees of the discussion session on the 29 July 2021, provided helpful insights into their perceived acceptability of the use of data without consent for future use within the Wynn Database for further research.

Overall, attendees were accepting of the use of unconsented data within the Wynn Database for further research. Attendees noted that a dataset such as the Wynn Database ‘doesn’t come around too often’ and felt that it could ‘potentially cause harm not to use it’ and highlighted its potential to improve patient quality of life, advance science and understanding of disease, and increase opportunity for collaboration. However, critical to proceeding with its use was the need for the research being undertaken to have clear patient and public benefit, for the database to be secure, for the data to be properly anonymised and have restricted access, or for a consent process to be in
place for third parties. However, attendees also noted concerns relating to the potential for unintentional harm due to lack of consent and how generalisable research findings from the Wynn Database may be for current and
future patients as tests, measurements and treatments may not now be relevant.

Attendees agreed that further involvement of patients and the public would be necessary to minimise unintentional harm, to ensure research being undertaken was for patient and public benefit, to provide ongoing review as to the ethical appropriateness of research and to inform decision making and consent processes relating to the Wynn Database. Key to these aspects was ensuring that patients and the public were involved meaningfully, provided with adequate support and those involved represented diverse groups.

Reflecting on how the Wynn Database team should communicate and engage further with patients and the public, it was suggested that feedback should be provided at all stages from updating, linking, and using the Wynn Database to feeding back any research findings and should be shared across multiple channels. Some attendees who had taken part in research previously noted the frustration of not receiving any feedback as to the findings of the study they had been involved in and also being unable to find relevant publications relating to the research following participation. Efforts should also be made to reach under-represented groups and those who would benefit most from the potential findings from the Wynn Database.

How we used the insights

This insight report summarising key points from the session was made available to the Wynn Database Research Team to help shape their application and response to the Health Research Authority Confidential Advisory Group, as well as informing the BRC application. The report was also provided to the members of the public who took part in the involvement activity. A full report on all public involvement activities undertaken in preparation for the BRC application can be found here. Through the process of conducting this and other public involvement activities, we have established a wider and more diverse network of contacts for ongoing involvement. We would like to thank all those members of the public who gave their time and thoughtful insights through these activities, and the researchers who engaged enthusiastically in the process.