Add your views - All workshop topics from 15 December

Introduction

This online survey provides you with an opportunity to add your views to all of the breakout room workshops held at the patient and public event on 15 December.

Each workshop topic is shown as a question with a free text box for responding with any additional ideas, thoughts and suggestions that you may have.

Thank you for your time and insights!

Workshop theme: Transparent use, meaningful value

If you were looking at a website that listed research projects that used health data, what sort of information would make you feel confident that each project benefited the public?

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Prompts: What sort of information would reassure you? Are there specific types of benefit you would want to see? Where would you expect to find this information?

Workshop theme: Transparent process, clear communication

If you were looking at a website setting out the rules and decision-making processes for applications to use health data in research, what would you need to see to be reassured that access to health data is being properly managed?

Maximum 20,000 characters

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Prompts: How much detail would you expect to see? Where would you look for this information? What would you want to know about who makes the decisions? How would you like this to be presented?

Workshop theme: Inclusivity, clear communication, collaboration

Looking at this simplified end-to-end process for using health data in research, where is it most important to have direct patient and public involvement?

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Prompts: Would this be in designing and/or running that part of the process? How could patient and public involvement be demonstrated? How would you expect this to be presented, in terms of clarity and openness?

Workshop theme: collaboration, consistent approach across the SDE network

Thinking about public trust and confidence, where do you think it’s important that all SDEs have a consistent process in place and where do you think a flexible, adaptable approach is better?

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Prompts: Where is a consistent approach most important and why? Where is the ability to be flexible most important and why? What happens if data held by one SDE needs to be used by another?