Simplifying Information Governance

Simon Madden is the chair of the Health and Care Information Governance Panel which meets bimonthly and oversees the provision of coordinated strategic Information Governance advice to the health and care system.

Today we have launched an online portal which will provide a one stop shop for access to national information governance (IG) guidance for frontline staff, IG professionals and the public. 

Simplifying IG is fundamental to giving staff the confidence they need to share data in a timely and appropriate way. IG likewise has a pivotal role in improving the security of our datasets and building the public’s confidence in how we use data. But the time has come to dispel some of the most pervasive IG myths and to change the culture in which IG is seen as an insurmountable barrier to data sharing; best avoided by playing safe even when this is to the detriment of care. 

One reason this culture has arisen is because the IG landscape in England is complex and there is widespread confusion about the rules surrounding the use and sharing of data. This confusion is made worse by the number of different organisations that provide advice and guidance on the topic.  

We want to empower staff in health and care organisations and IG professionals to make appropriate decisions about sharing information without getting tangled in a complex web of IG guidance and advice.  

We have seen the impact that simple and clear guidance can have during COVID-19. We provided simple advice on using tools such as video conferencing, mobile messaging and using your own device. We received a huge amount of positive feedback. The portal includes a case study from Carl Starbuck, Head of IG in Leeds and York Partnership NHS Foundation Trust, who describes the difference it has made to the care of patients and service users in Leeds.

Last year, we established the Health and Care Information Governance Panel as a key element of this work. The panel brings together the key decision makers such as the National Data Guardian, the Information Commissioner’s Office, the Care Quality Commission, NHS Digital, Health Research Authority & the Local Government Association. This means collectively we can provide clear and consistent guidance and advice. We have added a new kitemark to guidance that has been agreed by the panel - so that staff, IG professionals and the public can see that guidance has been through this collective process. 

As a panel, we have a number of immediate priorities. We want to ensure that the ‘one stop shop’ portal remains up to date and brings together key guidance and advice but also is responsive to changing circumstances and what you actually need. We welcome your feedback on the design of the portal, the guidance we produce and the gaps that you think we should fill on the portal pages. 

To provide further clarity and consistency of guidance, a ‘Red Tape Challenge’ will be launched to review existing published national guidance and check its accuracy, relevance, appropriateness and consistency. Over time we will bring this guidance onto the portal pages so you will no longer need to search on multiple websites for the different pieces of guidance on a topic.

We also intend to provide clarity around the grey area of data sometimes referred to as pseudonymised and provide guidance on IG considerations when joining up care and sharing data with other sectors.

I am deeply grateful to my fellow panel members for their support, collaboration and their contribution to this effort and look forward to receiving your feedback on this important work.