Begging to work for free - patient advocates speak up
Data driven innovation and meeting patients reasonable expectations about data use
Not just about the numbers: the power of data to drive change
Blog from Cancer Mum
Patient involvement in PROMS - individual opportunity and strategic challenge
Patricia Holch, Roger Wilson, Jennifer Bostock in bmjopinion
Towards a Sovereign Health Fund
Anne-Marie Naylor, REFORM
Blog about the use MY data workshop; All talk and no access?
UKCRC Tissue Directory and Coordination Centre
How medicine is broken, and how we can fix it
Paul Affleck, Programme Manager, Bowel Cancer Intelligence UK (BCI-UK)
People powered genomics
Vivienne Parry, Head of Engagement at Genomics England
Consent - too much of a good thing?
Ben Johnson, Public Advisory Board member, HDR-UK
Making Public Engagement work for all. Lynsey Cross, Swansea University & HDR UK Public Engagement Officer for Wales and Northern Ireland
Free text: to share or not to share?
Leave no patient behind: lessons from genetics on the risks of biased data
Patient participation ensures data are accurate and useful
"Say what you do; Do what you say" - a REFORM blog by use MY data
The importance of good-quality hospital data - "there is room for improvement in the quality of hospital 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.