Report launch: Putting Good into Practice - citizens' views on health and social care data
Click on the image for the full report. The report annex is available here.
The National Data Guardian for Health and Social Care (NDG) launched the Putting Good into Practice project in 2020. This programme is in two parts. Part one is a public dialogue commissioned by the NDG with Understanding Patient Data, supported by Sciencewise, involving over 100 participants in four locations. Hopkins Van Mil are delighted to have collaborated with the commissioning partners to design, deliver and report on the dialogue. Part two will be in the form of practical guidance to support those who make decisions about data use. It will be published in the summer by the NDG informed by the views of dialogue participants.
Today, 14th April 2021, the public dialogue findings report is published by the NDG. The dialogue aimed to explore what people felt about the use of health and adult social care data when used for purposes beyond individual care. The dialogue participants, working with a range of specialists and case studies, explored a number of complex questions such as: what about when a use of data might benefit some groups of people, but not others? What if it’s quite uncertain what the results of a piece of research might be? What if it won’t benefit the people whose data was used, or their families, but instead people who are quite distant, perhaps in another country? Our work therefore focused on these questions throughout.
How did participants respond? They said:
Be ambitious for the use of health and social care data in research and innovation
Treat identifiable and sensitive data with the utmost care
Distribute the benefits gained from the use of health and social care data fairly
Put safeguards in place to protect society from data manipulation
Ensure that public benefit outweighs profit.
The experience of reflecting on these complex issues is shared by some participants in the film clip below created by Paul Wyatt.