Do what you say and say what you do

"Many people talk about the importance of public trust" says this report.  But, it goes on, "Trust can only be earned, and that starts with understanding what people think, want and expect".

The report looks at trust and transparency in the politically fraught area of personal health and care data.  It reveals a "healthy degree of scepticism among publics about whether the proclaimed benefits of better data use are actually realised in practice".

It also acknowledges "significant gaps in our understanding of people’s views, most notably around the perspectives of minority and marginalised groups". It notes that "Some groups may have good reason to feel distrustful of the health and social care system and be inherently concerned that data about them could be used to target or discriminate against them".

The report's focus is development of a Local Health and Care Record system in London.  The aim is to make health and care information more consistent, more joined-up and more available to the clinicians, patients and families who need it.  This might be complex to implement in practice, but "there should be no barrier to providing straightforward and comprehensive answers about why, by whom and how patient data is collected, managed, protected and used".   And this should be informed by meaningful engagement with patients and public - "those with rights and interests over the data". 

So how can transparency be achieved in the area of personal data, where there are legitimate concerns over matters such as anonymisation and information governance?  The answer, it seems is that transparency can mean different things to different people but boils down to “do what you say and say what you do”. 

Debates over use of data are rarely easy.  But "It is incumbent upon those managing and using data to describe a clear trajectory from the collection of data to delivery of benefits. Without this, the public will have every reason to question whether the case for using data beyond individual care really stacks up".

You can download the report via our website.
 

 

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