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

use MY data workshop

Bringing patients together with data access bodies

NDG Consultation

Consultation about priorities
Closes 22 Mar 2019

Data Citation

Acknowledging the role of patient data

News and Updates

See the latest news, updates and discussions

Patient data stories

Hear what patients think about data

Quotations Some of our Patient Quotations are shown below: Read them all here Quotations
Patient quotations

"The only source of the data is the patient and I think it's beholden to all of us to share our disease data, so that we change the world and make it a far better place for others who are living with cancer."

"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 lot of misinformation out there. But what's important is that we continue to develop research and we continue to develop treatments for patients, and the only way to do that is through research and through gaining access to appropriate data that is actually going to change policies, change operational systems, and change treatment for patients."

"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."

"Having seen how my data is used that's why I'm involved with use MY data, because I actually want my data to be used by more researchers. I want more of my data to be captured, particularly my outcomes data, so that my data can be used by researchers to actually figure out why have I recovered, how have I recovered, are there any data that I have generated in my pathway that can help others who are going to come along behind me."

"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."

"Please use my data for gifting a better life to the cancer patients and your near ones and dear ones."

"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!"

"I think that if we communicate the benefits of patient data better in terms of its immense value to data analysts, researchers, clinicians, etc. as well as the stringent processes in place for sharing it, then patients would have more understanding & be less likely to want to opt out. I do think that patient choice is vital – but as patients we need to be informed & understand the impact (in terms of continuing valuable research) that our decisions might make."

“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."

“My experience of cancer was obviously made a lot better by the fact that thousands and thousands of people had given willingly of their data so that all the research could be done, so that instead of having radical mastectomies, as was happening a hundred years ago .... my cancer was dealt with relatively painlessly"

“I think the policy makers should get out the message of how the benefits of using the data and the controls around that that data so that people feel better reassured.”

“People should be encouraged to feel .... that their data is valuable, not just to them, but to the next generations and the wider population, and so I think people should take that responsibility in return for them being given great care while they’re facing problems.  One of their legacies can be that the evidence that’s gathered from their healthcare can subsequently be used … to improve the healthcare for other people.”

“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.”

“What’s important is that we continue to develop research and continue to develop treatments for patients and the only way to do that is through research and through gaining access to appropriate data that is actually going to change policies, and change operational systems and change treatment for patients.”

“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. “

“A lot of people worry about it (data) going to companies that are going to use it for making drugs, but that’s good because they’re making drugs to improve treatment.”

“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.”

“If we don’t use data to its best effect, use it more than we are using it at the moment, we are missing the best opportunity we’ve had this generation and for the next generation to make a difference. … I feel quite strongly about …. cancer data being used correctly.  It’s my belief that it should be a statutory requirement, it should form part of a social contract …… we need to make a difference, we need to do something different.”

“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.”

“I’m a great fan of things like having the data stored in some sort of central repository, or unified IT system and then having the gatekeeper access method to control it.   Again, if that is legitimate, ethically approved medical research then I see absolutely no problem with that happening and it is how we have made all the advances that we have made so far.”