Putting Good into Practice: A public dialogue on making public benefit assessments when using health and care data
This report details the findings of a dialogue with more than 100 members of the public about how to make sure that health and care data is used in ways that benefit people and society.
Applies to England
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This report is the first outcome of the Putting Good into Practice project, which is co-funded by the National Data Guardian for Health and Social Care, Understanding Patient Data and UK Research and Innovation’s Sciencewise programme.
Previous research has shown that the demonstration of ‘public benefit’ is a crucial condition for most members of the public to support the use of health and care data for purposes beyond their own individual care. However, what exactly is meant by public benefit is often not clear. So we engaged with members of the public to find out more, with a view to producing practical guidance from the National Data Guardian to help organisations tasked with making decisions about data use. The guidance will encourage greater consistency for decisions about whether health and care data should be used for research, planning and innovation. It will be developed in consultation with members of the public, data users, data custodians and policymakers and will be published later in 2021.
The public dialogue was designed and managed by deliberative engagement specialists Hopkins Van Mil and was independently evaluated by 3KQ.
We have developed a video in which participants shared their views.
Putting Good into Practice project video: what the participants said