Samaira Khan

Simon Li

Katie Porter

Embedding and standardising public benefit in sensitive data research

DARE UK (Data and Analytics Research Environments UK)is a programme funded byUK Research and Innovation (UKRI)to design and deliver a coordinated and trustworthy national data research infrastructure to support research at scale for public good.

DARE UK

Join us for an interactive session to discuss what to consider when deciding if a research project is in the public interest

About the eventThis is a joint session with <a href="https://www.pedri.org.uk/" title="https://www.pedri.org.uk/" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">PEDRI</a> (Public Engagement in Data Research Initiative).The session will examine what considerations need to be taken into account from different perspectives in establishing whether there is public benefit in any given research project which uses sensitive data.The session will then give a brief overview of the <a href="https://dareuk.org.uk/how-we-work/previous-activities/dare-uk-phase-1-driver-projects/satre-standardised-architecture-for-trusted-research-environments/" title="https://dareuk.org.uk/how-we-work/previous-activities/dare-uk-phase-1-driver-projects/satre-standardised-architecture-for-trusted-research-environments/" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">SATRE</a> (Standardised Architecture for <a href="https://www.hdruk.ac.uk/wp-content/uploads/2021/09/HDRUK_TRE-One-Pager.pdf" title="https://www.hdruk.ac.uk/wp-content/uploads/2021/09/HDRUK_TRE-One-Pager.pdf" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">Trusted Research Environments</a>) project and consider what additional guidelines for public involvement are necessary in a federated system and how this can help determine whether proposed research will have a public benefit.Participation at this event by public contributors attracts an honoraria of £30 per session, following HDR UK rates. Participants will receive an email from DARE UK following the event, to claim the payment. Event objectives<ul><li>To learn more about public benefit in sensitive data research from different perspectives;</li><li>To consider how additional guidelines for public involvement in a federated system could help determine whether proposed research projects will have a public benefit;</li><li>To discuss what could be included in those guidelines to ensure all approved sensitive data research benefits the public.</li></ul> SpeakersSamaira Khan, PEDRISimon Li, SATREKatie Porter, HDR UK / DARE UK Who should attendMembers of the publicStakeholders from the TRE Community Further detailsThis meeting will be on Zoom. Please download or update this app before the meeting commences.Participation at this event by public contributors attracts an honoraria of £30 per session, following <a href="https://www.hdruk.ac.uk/wp-content/uploads/2024/08/Honoraria-and-Expenses-Policy_v4.pdf" title="https://www.hdruk.ac.uk/wp-content/uploads/2024/08/Honoraria-and-Expenses-Policy_v4.pdf" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">HDR UK rates</a>. Participants will receive an email from DARE UK following the event, to claim the payment. Participation will be recorded over the course of the cafe.For public member enquiries about participating in this event, please send an email to involvement@dareuk.org.uk. Background information<ul><li><a href="https://www.gov.uk/government/publications/what-do-we-mean-by-public-benefit-evaluating-public-benefit-when-health-and-adult-social-care-data-is-used-for-purposes-beyond-individual-care/what-do-we-mean-by-public-benefit-evaluating-public-benefit-when-health-and-adult-social-care-data-is-used-for-purposes-beyond-individual-care" title="https://www.gov.uk/government/publications/what-do-we-mean-by-public-benefit-evaluating-public-benefit-when-health-and-adult-social-care-data-is-used-for-purposes-beyond-individual-care/what-do-we-mean-by-public-benefit-evaluating-public-benefit-when-health-and-adult-social-care-data-is-used-for-purposes-beyond-individual-care" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">National Data Guardian: What do we mean by public benefit</a></li><li><a href="https://understandingpatientdata.org.uk/defining-public-benefit-data-use" title="https://understandingpatientdata.org.uk/defining-public-benefit-data-use" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">Defining Public Benefit for data use</a></li><li><a href="https://www.youtube.com/watch?v=auExNHEGwcc" title="https://www.youtube.com/watch?v=auExNHEGwcc" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">Introduction to the SATRE Project</a></li><li><a href="https://www.youtube.com/watch?v=kzUU5ljII0Q" title="https://www.youtube.com/watch?v=kzUU5ljII0Q" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">Engaging with a new TRE Specification</a></li></ul>

Agenda

PUBLIC MEMBERS - Join meeting and have introduction to project

Everyone else join - General Introduction (Katie Porter & Samaira Khan)

Breakout Rooms to discuss scenarios from particular perspectives

Feedback from groups

Overview of public benefit and SATRE (Simon Li)

Breakout Rooms to discuss how to embed public benefit in SATRE

Feedback

Meeting close

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Embedding and standardising public benefit in sensitive data research

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