Panel of experts gather to crack the data sharing conundrum

Graphic to illustrate data linkages and sharing in healthcare

A new advisory group has been set up to bring together information governance experts and people who have led on projects from around the North East and North Cumbria specialising in setting up and gathering data sharing preferences.

The group has been convened by Fiona McDonald, Clinical Advisor at NHS England and also a Director at the Great North Care Record.

Getting the public to set their data sharing preferences is a founding principle of the Great North Care Record. We want people to be in control over how their data is shared. The value of healthcare data is enormous to researchers and as a programme, we want to be able to unlock the data held in healthcare IT systems.

If we can provide researchers with access to healthcare data, that the individual has agreed to share in a positive, opt-in – we can make the North East and North Cumbria one of the best places in the world to do healthcare research.

The group meets on a regular basis. The projects included have already explored getting individual’s permission to share their data for purposes beyond their direct care and have real life experience of doing this work. At the same time, we are asking people for their communication preferences, so that researchers can contact people directly to participate in research studies.

Bringing together these individuals, along with information governance experts from both the NHS and academia means that we have and will provide a user-friendly mechanism for the people of the North East and North Cumbria to set their data sharing preferences.

We have developed a draft information governance framework which sets out the legal and ethical basis under which we will share healthcare data. This is currently a draft and we welcome comments on this.

This is a tough nut to crack, but we believe, that by bringing together the right people – we are on the way to creating a consent-rich research environment.

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