A movement for patients, relatives and carers. Harnessing the patient voice to build confidence in the use of patient data for research and analysis.
"There is no data about us, without us, so use our data to help us, and all the other cancer patients who will be coming in the future."
Patient advocate, use MY data
Patient participation ensures data are accurate and useful
"Say what you do; Do what you say" - a REFORM blog by use MY data
“Researchers don’t know what they’re missing” — the impact of patient involvement in research
Harnessing the value of NHS patient data
Patient data is all about asking questions
The new Gift Relationship between the public and the NHS. Not blood but data
My fiancee is gone but she’s still helping others fight cancer. A moving article by Henry Scowcroft printed in the Guardian newspaper.
Macmillan’s Julie Flynn guides us through the complicated world of cancer data
Big data: Everyday opportunities to improve care?
Data protection versus health protection
Cancer Research UK - Patient data saves lives. Here’s how we use and protect it
Insight research programme: unlocking the power of audits and registries
Your data, your power: How you can help save lives
Alison Stone, Coordinator for use MY data, "Patient data saves lives, lets acknowledge it"
Dan Wellings from The Kings Fund, talks about public engagement – pitfalls, barriers and benefits
If you want something done well, do it yourself....
Big Brother Watch - NHS, DeepMind and the ICO: The importance of privacy in a modern NHS
James Hargrave, Empower: Data4Health
Shrenik Shah, 20 year Cancer Survivor
David Gilbert, Patient Director, Sussex MSK Partnership (Central)
Chris Carrigan, Patient advocate
Jem is Director of the
National Cancer Registration
and Analysis Service (NCRAS).
He is a keen advocate of the
uses of cancer data,
and a regular blogger.
Lucy is the Head of Analysis
at the National Cancer
Registry and Analysis service.
She blogs about uses of
cancer data, in
particular Routes to Diagnosis.