A movement of patients, carers and relatives

Harnessing the patient voice to build confidence in the use of patient data to save lives and improve outcomes


In this blog, ‘Stories from the Heart’, Mary-Lou Owen and Paul Charlton reflect on an accessible information approach to understanding patient data.

Mary-Lou was a project participant and is an artist and disability rights activist.

Paul was a project tutor and is a use MY data member and a NIHR Patient Research Champion.

The project is titled ‘No Surprises to Any Citizen’ and was commissioned by Understanding Patient Data. Follow this link to the Understanding Patient Data project information page with the project easy read documents in English and Gujarati and a talking text video.

This is a direct Talking Text link.

May-Lou and Paul write:

Our project set about challenging inequality in our understanding of how personal health information is used for health research and planning. Not all citizens have equality of access to understand and to trust how their personal health and care data is gathered and used.

There were two groups co-creating and co-producing the material - one from Suffolk and the other from Leicestershire. There were learning disabled, autistic, sensory disabled and non-disabled participants. We had interpreters for sign language and for Gujarati speakers.

There are 1.5 million learning disabled adults in the UK. There are around 1 million autistic adults. One in six adults in England, 7.1 million people, have very low literacy skills as defined by the UK National Literacy Trust. That’s 16.4% of the population. One in four adults in Scotland, one in eight in Wales and one in five in Northern Ireland, experience challenges because of low literacy.

There are health inequalities between ethnic minority and white groups, and between different ethnic minority and different white groups.

By creating digital materials, based on easy-read design principles, we set out to co-create accessible information about the uses of patient data. With graphic design expertise by Max Clark of Thinklusive we set out to:

  • increase understanding of large data set usage in health research in communities where usual information is more difficult to understand
  • engage with and involve learning disabled, autistic and physically disabled adults to co-create and co-produce a set of learning materials in understanding large data set usage in health research - we did this in Suffolk including makaton and sign language interpreter support
  • similarly co-create and co-produce materials as culturally and linguistically appropriate in respect of different ethnicities - we did this with the Leicester based The Centre For Ethnic Health Research who brought together learning disabled and autistic adults, family carers, support workers and Gujarati language interpreters

Although we were primarily aiming our materials at people with an additional communication need, we also hold the expectation that accessible materials support anyone who is new to patient data or health research studies.

The late Dame Fiona Caldicott, as the National Data Guardian for Health and Social Care, wrote to support our project bid to potential funders:

“I was pleased to hear about this project and strongly support its aims. It is vital that we make every attempt to reach all audiences when we’re having important conversations about data and its value. Data is a complicated topic, and so taking steps to tailor those conversations and the language we use, to better help some audiences understand, is an admirable aim. I do hope that this project is granted the funding that will allow it to proceed.”

We had two groups - one from Suffolk and one from Leicestershire. They co-created and co-produced project material separately.

The project information page has a final document in three versions: one from the Suffolk group, one from the Leicestershire group and one Gujarati language version from the Leicestershire group.

Our groups explored media and health literacy as the doorway to understanding patient data. There were seven Suffolk learning events, some organised in person, some as hybrid meetings with some people participating in person and others via a zoom link, others just as zoom. There were also four Leicester meetings, two in person and two by zoom.

Our learning material adopted The Evidence Hunter Activity Pack, created by the charity Sense About Science and published in January 2019. The Pack was adapted into an Easy Read format for the presentation material.

Our discussions raised personal and family experiences of disease and family distress, drawing in pandemic experience as well. Our diverse experiences allowed the workshops to develop critical thinking skills from Hunter Evidence hypotheses, into real world events and from personal memories to achieve a certain understanding of the use of patient data in health care.

These exchanges caused Joel, one of the participants, to powerfully describe our discussions as Stories from the Heart.

Mary-Lou describes why:

“In July/September (not 100% on date) 2021 I was on zoom with Max and Paul Understanding Patient Data as Stories From The Heart. We were shown a youtube video of information on someone having a heart attack, but weren't warned of what the video was, prior to watching it. My 1st reaction was to slam my laptop lid down and storm off but I didn’t…. I just turned off the camera and sound on my laptop and then got up and got some juice, sat there and cried (I didn’t see any of the video). Once the video had stopped I wiped my eyes and then put my video and sound back on so I could be seen.”

So why did I cry?

I cried when the project left the ‘dry’ compass of ‘what is’ patient data and tracked its way into the ‘why’. We were using the Understanding Patient Data videos of health conditions connected to routine patient data collection. They describe ‘why data saves lives’ through cartoon videos where stories of cancer, dementia, stroke and heart attack are unpacked.

I was in my own home, joining online.The video took me back to “27th July 2015 at 3.55pm…. My mum had a heart attack and died in the house a few metres from where I was doing my zoom…..My mum had a heart attack and died, here”

 Dame Fiona Caldicott and I experienced the same heart-felt intention, Dame Fiona as a matter of sincere public policy and me and everyone else in the groups as individual citizens whose personal experiences of understanding why we routinely collect patient health information are for us, ‘Stories From the Heart’.

In our Suffolk and Leicester workshops our stories revealed accounts of how personal and family stories bring emphatic patient data understanding. This is even when, as with our project, we co-created and co-produced the project and its outputs through media and health literacy approaches. Critically thinking about how personal health information comes to us, its sources and the evidence relied upon, all resonate so much more emphatically when those come as personally relevant….when linguistically and culturally appropriate….and when explored through each one of us as Stories From the Heart.

This video link is to Sharifa and Rachida from the Leicester group. Please use the video subtitle assist when watching it. Sharifa and Rachida reveal the strength in co-creative working, their words exclaiming their satisfaction in knowing they created the content of the project documents. As well, they assert their new understanding of the use of personal health information.

 Thank you to every single person who co-created this project! 

For more information about the project or to talk about adopting our approach to accessible information for a research or health and social care or other project of your own, contact 

Max Clark: max@thinklusive.org

Thinklusive | Accessible information design for health and social care 

Paul Charlton: charlton808@btinternet.com



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