Who owns my health data?

Who owns my health data?

In 2008 I was diagnosed with Polycystic Kidney disease and as a renal patient was offered access to PatientView which gave me visibility of my blood results on that same day as I have the blood test.

PatientView welcome screen

PatientView is a great system and gives me more control of my health and almost realtime access to key results information. If everyone who wanted it could have it I think it would make a real difference. If I see something that looks odd I can escalate to my consultant and get a rapid response. I use the data to plot my kidney function and accurately predicted future deterioration ahead of kidney failure.

Kidney function graph

I’ve always taken an avid interest in my health. Recently I had an ultrasound of my transplanted kidney to check all was well – I was surprised at the refusal to allow me to take a picture of the screen and the reluctance to even let me see the image on the screen. It made me think there is still a long journey to reach real engagement and patient owned records.

I was sad that the staff probably felt they were helping and protecting me by refusing my request to see my data. For someone very keen to ‘own’ their condition I felt excluded from my care.

My kidney is completely normal – but the experience made me wonder who owns my data? Me or the NHS? Was it right or wrong of the clinical team to refuse my requests to see the scan? And isn’t the image of my kidney mine anyway – or does it belong the the NHS as they funded gathering it?

In my study on the NHS Digital Academy I’ve reviewed other health systems including the innovative Estonian eHealth model where all citizens own and control access to their health data online.

I think health and care in the UK is on a journey towards more accessible records but we’ve still got a long way to go – and perhaps the culture in the NHS needs time to adjust and develop to reach acceptance that giving more ownership and responsibility to those who request it is a good thing.

I recognise the arguments for NHS control of investigative treatment data in case there is sensitive information that needs to be carefully shared with the patient. But I also believe there are benefits for one’s own health that comes about through transparency, ease of access access and visibility of my own data.

I look forward to a time when our health records are available via the internet on secure patient portals and perhaps the new NHSApp is the beginning of that future.

NHS App Screenshots

For now I’ll get on with a subject access request to get a copy of the ultrasound images of MY kidney – which no doubt will cost more to provide compared to having just let me see the images at the time of the scan.

What are your views of personal health records?
Should the NHS offer greater visibility to patients or not?

@robblagden

Rob Blagden works for 2gether NHS Foundation Trust in Gloucestershire as Deputy Director of IT, he is also the Trust’s Lead Governor. Rob was recently elected to sit on the first Alumni Committee for the Digital Academy.

Rob Blagden