A National Data Guardian for Health and Care project, co-funded by Understanding Patient Data and the Sciencewise programme has commenced. The dialogue will explore public attitudes towards the sharing of health and social care data for data-driven research and innovation. Specifically, how does the public weigh up benefits and disbenefits of health and social care data sharing for research, and what benefits count as ‘good enough’?
What sort of uses of data are you looking at?
Whenever we go to a doctor or a hospital, if we receive support from social services in our own home or live in a care home, the people looking after us record information about us in our patient record. The main reason for this patient information being recorded is to help with planning and giving us our individual treatment.
As a result, the NHS and social care services hold a lot of information about patients and this can also be used for other things. When data from many patients is linked up and pooled, it can be used by researchers and scientists to spot patterns and develop new ways to predict, diagnose or treat illness.
NHS and social care organisations do not always have the expertise needed to do this work on their own and so they sometimes work in collaboration with researchers, scientists and inventors in universities or private companies. New medicines and technologies can then be developed to treat patients.
Why a dialogue now?
There is significant government activity and investment to advance the country’s life sciences sector by providing improved access to health and care data to encourage data-driven research and innovation.
In relation to the uses of such data for purposes beyond individuals’ own care, such as research and innovation, we know that the extent to which such purposes benefit the public is the critical key condition to their acceptance of its use.
Data controllers already assess public benefit or interest when deciding whether to allow patient data that they hold to be used to develop new medicines and technologies. But as demand for access to this data grows, more detailed guidance on how to make this judgement will help ensure decision making is consistent and so that the public can be confident that their data is being used in the public interest.
How will the dialogue outputs be used?
This dialogue will improve our understanding of how the public assess and weigh the public benefits and disbenefits of proposed data uses.
The National Data Guardian intends to develop guidance or advice that would help organisations to carry out public benefit assessments with greater confidence that this is in line with public values. This will help a range of bodies and data controllers to make decisions about whether data should be used for purposes beyond individual care.
How will the dialogue be structured?
Public dialogue workshops will take place in autumn 2020 at four locations around the UK: Reading, Stockport, Great Yarmouth and Plymouth. A report will be published in spring 2021 summarising the findings of the initial workshops. This will be used by the National Data Guardian and Understanding Patient Data to develop draft public benefit guidance and a further dialogue workshop will be held that spring with a number of the original workshop attendees to test whether this meets their expectations.
An Oversight Group is being formed by the National Data Guardian to bring independent oversight to the process and development of materials. The Group includes stakeholders with a range of different perspectives on the topic.
The dialogue process is being designed and managed by Hopkins Van Mil, following a mini competition run through the Sciencewise framework. The dialogue will be independently evaluated.
Find out more
Further details will be provided once the project is complete.
For further information on the dialogue project, please contact:
Jenny Westaway, Head of the Office of the National Data Guardian (firstname.lastname@example.org)
Philippa Lang, UK Research and Innovation (email@example.com)