It’s My Story: Rethinking Data, Ownership and Person-Centred Care

It’s my data and I’ll share if I want to (apologies to Lesley Gore). 

This week three things have caught my eye… and they are kind of connected… because I think they are about ownership and control and exemplify how differently we need to think if we are truly seeking to shift systems to work in person-centred and personalised ways. 

Firstly the news story about MPs debating the Single Patient Record and concerns raised from the British Medical Association because, in his words, “GPs have protected patients’ confidential records since the inception of the NHS in 1948, a legal duty that they take incredibly seriously.” The news article draws attention to ‘doing it the right way’ and ‘audit trails’ so it can be seen who has accessed patient data and there is a fear of somebody exploiting the data for commercial gain. (Well, hello – here comes Mr Cynical whispering in my ear ‘that already happens in many parts of our lives anyway’).  

What I find interesting in this is that ‘data’ feels removed or disconnected from actual people, And, for me, this feels as if nobody (namely the policy people designing this) thinks the data belongs to the person – it all seems to ‘belong’ to the GP or the hospital or social care provider.  

I think the Single Patient Record is absolutely the way to go however, to me there is a fundamental problem in the Single Patient Record sitting in the NHS app – and it is that it is medicalised, not holistic, not person centred – it is not my story – it is the NHS interpretation of my story.  

What if ‘my story’ sat somewhere else and I chose to share it with the medical professionals that I want to know it – my GP, hospital, dentist, paramedic, housing association, social care provider and whoever I think needs to know my story.  

What if it wasn’t just about me as a ‘patient’ but me as a person?  

What if I got a report every week saying these people have accessed your information – are you happy with that? What if I got an alert saying X wants to access your GP records – do you give permission? And maybe they have to send you authentication and identification? It’s my data and I’ll share if I want to. 

The second thing that got me thinking was an email from the Health Foundation highlighting findings from their 6 monthly surveys exploring public opinions on the NHS. What do these regular surveys tell us? There are some great ‘deep dives’ on Fixing the Front Doors, Attitudes to technology and AI in health care and Public opinion on the NHS net zero ambition.  

A couple of bits caught my eye in particular. Less than half of those surveyed are aware that GP practices are owned by groups of GPs themselves – suggesting that people are therefore unaware that their health data is not ‘owned’ by the NHS. And the use of AI for advice about health and treatment is increasingly acceptable to the people that were surveyed.  

I also found this bit really intriguing. People are generally in favour of the idea of the NHS working towards net zero – especially when it is thought of in terms of reducing the carbon footprint by reducing waste. Interestingly one of the main ways people would like to see this done is through the reuse of equipment and medicines. Suggesting that community run equipment exchanges may be worth thinking about – perhaps a bit like a Tool Library or Library of Things – anyone up for exploring funding for that – so that people can borrow whatever medical or assisted living equipment they need in a safe and controlled way in their community? 

And finally I am very intrigued by news of a Community Needs Index. I get why there are numerous indices out there – all trying to help us understand what people want or feel. 

For example there is the centre for Thriving Places Index , the Indices of Multiple Deprivation and now the OCSI Community Needs Index  

I know they are useful, data is important and can help us to understand all sorts of things but I have an issue – what do they actually help us to understand if they are not backed up by stories of what it is actually like to live there? It takes me back to the opening question of how can we shift systems to work in more person-centred and personalised ways? Can we do this without the personal stories. For example, I have one friend in particular who regularly declares their love for Hull (based on their experiences of working there) – but there are many datasets that suggest they really shouldn’t. So, yes it is great to have datasets but please, please, please can we enrich them with – and link them to – real stories of what living in those places is like.  

Maybe through a ‘my story’ app where I choose where my story is shared?