Good enough? A public dialogue to assess public benefit in health and social care data

HVM is delighted to work with the National Data Guardian for Health and Social Care (NDG), and continue to work with Understanding Patient Data, on a new public dialogue to gain understanding on how people assess public benefit in the use of health and adult social care data for purposes beyond direct care. This dialogue is being supported by Sciencewise.

A lot is already known about public expectations in this space, including from the mixed methods research with integrated Citizens’ Juries HVM designed and delivered last summer (how long ago that seems!). We know that public benefit is only part of the test of trustworthiness; that work to date has focused largely on benefits to the NHS rather than to citizens; and that attitudes to what is acceptable and what is not vary. What Dame Fiona Caldicott, National Data Guardian stated back in 2016 holds true,

“What must remain our guiding principle is trust. It is essential that the way health and care system treats people’s data, and the way that conversations are conducted about it with people, engenders public trust and confidence. ”

One of the main reasons for our delight in this project is that the process will not end with the insights report we produce from the public dialogue process. The NDG intends to use the dialogue findings 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 draft policy output will be reviewed by participants in the dialogue process in a workshop in spring 2021, really enabling effective dialogue and a satisfying culmination to all the dialogue participants’ deliberations.

Do email research@hopkinsvanmil.co.uk if you would like to find out more about this programme. We’ll post updates here and on @HopkinsVanMil on twitter.