use MY data began on 09 June 2015 at the National Cancer Intelligence Network conference, in Belfast.
In response to concerns about how the proposed Care.data programme was causing cancer research to stop, patients, carers and relatives gathered together, over a lunch time session. The session was jointly hosted by Cancer52, Cancer Research UK and the National Cancer Intelligence Network.
Its focus was on how current cancer patients could help turn their data into the best outcomes for future cancer patients. ‘Donate your data’ was proposed – an organisation were patients would willingly give their data for this purpose.
The patients attending the session showed unanimous support for the concept of donating their data.
Some specific comments & questions:
A follow-up meeting was arranged, which took place in London on 29 July 2015. This comprised delegates from the 09 June session, along with representatives from the Brain Tumour Charity, Cancer52, Cancer Research UK, Macmillan Cancer Support and the National Cancer Intelligence Network,
Key themes and results from the workshop were reviewed:
And a key message emerged: Every day lost is another person dying.
The Working Group discussed practical ways forward. Most felt that the name ‘Donate Your Data’ was not accurate – as cancer patients said their data had been taken, and the focus should therefore be on how their data would/could be used. Further work, post-meeting led to the name change to use MY data.
Some of the key decisions and actions that emerged from the meeting were:
From its beginnings in 2015, use MY data has evolved through a rolling programme of engagement and communications. We host at least two patient data workshops each year, alongside a programme of campaigns, networking, presence at national events. We are increasingly being asked to 1) advise other organisation about patient engagement and 2) engage with organisations who hold patient data.
From the initial beginning of patients, relatives and carers affected by cancer, membership of use MY data expanded in two ways.
"the only independent patient movement in the UK focused on patient data"
use MY data is registered as a not for profit company limited by guarantee in England and Wales (14425977)