A movement for patients, relatives and carers. Harnessing the patient voice to build confidence in the use of patient data for research and analysis.

Patient advocate case studies and stories


Michael Maguire: There's a lot of misinformation out there
Helen Bulbeck: I think it's beholden to all of us to share our disease data
Victoria Nnatuanya: I am interested in people being able to benefit from the use of my data
Claire Wiseman: I think I've got a moral obligation
Andy Smith: I actually want my data to be used by more researchers
Shrenik Shah & Nilam Shah: Please use my data for gifting a better life to cancer patients
Su Jenkins: What consent means to me
Tom Haswell: Iím quite happy for my data to be used in any way they wish
Roger Wilson: Iím old enough to remember a data free time
Shrenik Shah: use MY data is the best option to gift to the new generation
John Reeve: all of the wonderful things that cancer patients are able to have now is the result of people in the past giving their data
Nicole Larkin: Iíve just recently had my five year check-up. It was really nice that they spent the time to go back to the data from day one Ė to show me how everything had progressed, what had changed, and where I had improved
Margaret Ticehurst: My experience of cancer was obviously made a lot better by the fact thousands and thousands of people have given willingly of their data so that all the research could be done
Margaret Johnson: Iím absolutely passionate that our information should be used
Margaret Grayson: Asking the right questions of the data available for me has meant finding the right surgery technique for my mastectomy...
John Marsh: Data is really important for improving cancer services
John Lancaster: The responsibility to make data available for the benefit of others
Ian Clements: I donít mind my data being shared
Hilary Stobart: The type of treatment that I had depended so much on the data of patients who went before me
Claire Wiseman: We are missing the best opportunity weíve had in this generation and the next to make a difference
Christine Allmark: Data is important to research
Richard Stephens: If that is legitimate, ethically approved medical research then I see absolutely no problem with that happening