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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.
Data evidence on tap

There is a growing body of research on how the use of data is developing across health and care services - and what patients and public want.   

This report describes the NHS as "the single largest integrated health care provider in the world".  Its 55 million patient records are a "treasure trove" that "may have an indicative market value of several billion pounds to a commercial organisation".

This report looks at the "digital revolution" in mental health services.  There is a need to cut through the hype of new consumer-facing apps and build a greater understanding of where the biggest transformational benefits lie.

This review found that across the NHS there is widespread commitment to keeping data secure, but effective action is not always being taken where necessary. While data, for the most part, is generally treated safely, NHS organisations remain vulnerable to potential risks. 
For more on data use in healthcare, search "data" here:  
This just in…
New evidence on all aspects of patient experience and involvement is being published all the time.  Check out our top picks from recent reports:

Care in places, inequalities in local authority adult social care spending power.
Social workers and a new Mental Health Act, final report.
GP Patient Survey, national report.
Free resources

Not a subscriber to the Patient Experience Library?  Don't worry - you can still get lots of free stuff from our website!  

Our quarterly Patient Experience magazine carries insightful comment from a range of contributors, as well as our top picks of recent reports on patient experience and patient/public involvement. 

Patient Experience in England is our annual overview of the evidence base, drawing on surveys and research from government bodies, health charities and academic institutions.  The evidence is broken down into manageable chunks, and research findings are grouped under key themes for ease of understanding. 

You can browse our Knowledge Maps to see how patient experience is being reported in your area.  

And if you want to wear your patient experience heart on your sleeve, you can download and print our posters and stick them on your wall.  Better still, post them to the Chief Executive of your local NHS Trust!
Do you know of a stand-out report on patient experience that people in CCG's, PALS teams and local Healthwatch should be reading?  If you do, and you'd like to see it featured in this newsletter, let us know! 
The Patient Experience Library offers unparalleled access to patient insight and experience with over 50,000 documents, including...
  • Patient experience reports from health and care charities and think tanks
  • Guidance on matters such as patient-centred commissioning
  • CQC inspection reports and patient survey results
  • All the reports from the local Healthwatch network
  • Quality Accounts from health service providers
  • Valuable archive materials from bodies such as LINk and the NHS Institute
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