Quotations from use MY data advocates
"Is the patient voice heard enough so that we learn from patient's experience? To be honest, no"
"The use of my health data is infinitely more important than the possible misuse."
“As a cancer patient, I want, nay DEMAND that my data is used safely and securely for research and patient benefit.”
“A continuum – Data, Information, Knowledge, Understanding. But without the data, the rest does not happen.”
“It’s my life at stake”
“Through data use, treatments, outcomes and patient benefits can and are radically improved."
“I am interested in people being able to benefit from the use of my data and other relevant data, because it helps in making plans, improving the system and checking on progress of what is being given to us – the treatment we’re getting.”
“There’s a big need for the media, for different outlets, to publish information responsibly and not to generalise and not to go overboard on issues that actually are misinformation for people.”
“The use of my data is important to me, because I think I’ve got a moral obligation to do what’s right for me, my family, my friends, society – current society, future society. We can make a difference. It benefits everybody and hurts no-one.”
“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 measures 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.”
Please feel free to use these quotations. All we would ask is that you reference use MY data as the source.
If you want to add your own quotation, please use this link to submit by email.