St James / Flatiron Health care

[PeterP54]

I received a letter from Leeds this morning informing me that St James was entering a partnership with Flatiron Healthcare (an American Company part of the Swiss Roche Group) to allow them access to share data about cancer patients including personal data. The objective is to then anonymise the data, collate it, share it with St James and the NHS but also sell it to researchers (read drug companies). If you do not want your data sharing, you have to opt out by Sept 25. That's just 3 weeks away. If you miss the deadline and want to opt out you can still do that, but only for new data. Anything already shared remains with Flatiron.

There are various "assurances" about the personal data being removed but there is nothing about whether the systems for removing personal data have been independently tested and verified to work. If there is one thing the Post Office Scandal has taught us, it's that systems do not always work as intended. (By the way the letter was dated 28 August - another PO scandal)

Have people treated by other centres received similar letters?

Are you happy to share your personal data and trust it will be anonymised?

Is 3 weeks enough notice baring in mind holidays and brain fog if still undergoing treatment. Would 3 months be better?

I have prepared a letter for my MP but wont send it until Tuesday pm (3/9)