By Grace Annan-Callcott, Program Adviser. 

Today, we’ve published new, accessible resources that explain how patient data is used and the role of large-scale health datasets in research.  

There's an easy-read guide, which has been co-created with adults with learning disabilities based in Suffolk and Leicester, available in both English and Gujarati. There's also a talking text video where a narrator reads out the guide—see below for all the links.   

We want these resources to be used by teams that need to communicate the way patient data is used to a range of different audiences, so like most of our work, they are available under a CC-BY license.  

How we got here 

At Understanding Patient Data, we strongly believe that everyone should be able to understand how patient data is used. But we don’t always know the best way to communicate these messages to different groups, which is why co-creation is so critical. 

So, we worked with Thinklusive, Ace Anglia and the Centre for Ethnic Health Research to produce these resources. Their teams led the co-creation sessions and the development, testing and refining of the guides and video. A huge thank you to all involved, especially the participants whose valuable expertise was crucial to developing the guide.  

The engagement sessions were attended by a diverse group of people from Suffolk and Leicester—take a look at the back cover of the guide for a little bit more information about some of the people who took part. Sharifa, one of the contributors from Leicester said: “What I liked about the session is that it is interactive, got to meet a lot of different people, there’s a lot of information that I didn’t know before that, that I was glad I learned.” 

Mary-Lou Owen, an artist and disability rights activist who took part in Suffolk, said: “Being part of making things like this easy-read will hopefully help someone else have a better outcome in my situation. I also know when you are faced with that pressure of life and death all sense goes out the window so easy read would be good for just anyone in my opinion." Mary-Lou and Paul Charlton, one of the project leaders and an NIHR Patient Research Champion, have written more about their reflections of this work in this blog.

How organisations can use these resources 

These guides have been designed for—and with—people who have some additional communication needs but they could also be helpful as an introduction for anyone new to this issue.  

If you’re in an organisation or team that collects, manages, uses or explains patient data then there’s a few different ways you could use them:  

  • Publish them on your website: download and host them on your site, on pages or areas where you explain how patient data is used. 
  • Use them in engagement work: if you’re running sessions about patient data, they could be used as discussion prompts or introduction materials. 
  • Build on this approach to create something more tailored to your work: draw on the content and approach we’ve taken here to develop your own version, more relevant to your specific context. 

There will also be things we haven’t thought of, so do get in touch and let us know how you’re using these resources. You can write to us at hello@understandingpatientdata.org.uk.  

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The links