A movement for cancer patients. Harnessing the patient voice to build confidence in the use of patient data for research and analysis.
Quotations from use MY data advocates
“As a patient who has spent the past 3 years being treated for cancer, I'd like to know that any info on my records (inc samples, tissue, scans, etc.) can be used to aid understanding & research. That to me provides a positive in what has often been a difficult time in my life. If others can benefit in some way (as I have from those whose data/tissues/records have been used & shared in the past) then use it & share it!”
“High profile data breaches can cause knee jerk reactions which aren't helpful & cause fear & confusion for us patients …yet breaches are rare, the benefits of accessible & transferable data is huge & I know that as someone recovering from cancer I'd like to know that my tissues/data/biopsy etc. is used to help understand oesophageal cancer better & maybe (who knows) prevent it in future.“
“I think the policy makers should get out the message of the benefits of using the data and the controls around that data so that people feel better reassured.”
“In the end it is their decision and their choice, .... but it is also their responsibility to make the data available for the benefit of others.”
“There’s always the potential problems that can come from collecting data .... but there are so many measure in place to prevent that from happening. So, you have to trust the people who have the data, they know what they’re doing and if you can, and we should, then a lot of good can come from that. “
“I think that, although it is the patient’s data and in the end it is their decision and their choice, but it is also their responsibility to make the data available for the benefit of others. Data has to be used responsibly and it has to be kept safe, but it has to be available for research.”
“I’m quite happy for my data to be used in any way they wish, whether it’s identifiable or not. More data could have been taken from me, more tissue samples, blood samples …. whatever tests they may have wanted to do, to find out if there was something there that made that treatment so effective, when it was not expected to be as effective as it was.”
"The type of treatment that I had depended so much on the data of patients
who went before me."
"I want my data shared with whoever will use it for the good of everybody."
”We want our data to be used.”
”I’m not too worried about my data being anonymised.”
”If nothing else comes out of this diagnosis …. let it be to save some-one’s life. ”
“I’m totally committed to my data being used as widely as possible, to solve this type of cancer.”
”Patients need to be aware that they have a responsibility to provide the data.”
"I believe that as a patient I have a responsibility to the rest of society in permitting the use of my data."
"The only source of data is the patient."
"If data is not used, people will die."
"It's our data and we want to share it, so let's share in making the decisions about who gets it and why."
"Data makes the unknown, known."
"If data is not released, nothing changes."
"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."
"Data gives patients, and their advocates, power."
"Patients should be in charge of their data, because their data is a gift."
“One of the most valuable uses of data is to learn.”
"Every day lost is another person dying."
"Put patients at the heart of the matter; empower us as active citizens."
"Data improves services and develops new treatments; data adds to knowledge and understanding; data saves lives."
"Use our data..!"