Update (16/1): PHE consider tobacco companies to be doing ‘medical research’

The Daily Telegraph reports today (15/1/2018) that Public Health England gave the medical histories of many cancer patients to a company for a “trends in … lung cancer” study – a company that works for a tobacco company, while that tobacco company was taking the Department of Health to court over “plain packaging”.

PHE believe NHS rules should not apply to them – this includes other opt outs or rules on data handling.

We expect more details to emerge in coming days, as the entries in the PHE release register are scrutinised, and many more companies that don’t appear on the register come to light. (if you’d like to help/watch, there’s a communal google doc for the PHE register here, plus a second one for all NHS data releases)

Press quote: Sam Smith, a coordinator at medConfidential said:

“This is a system that relies on public trust; a system so flawed that it’s not yet clear whether PHE broke any rules.

“The release of this data relies upon loopholes in the Data Protection Act – and unless Public Health England satisfied each technicality they’re arguing about, then they may have breached 3 different laws by giving sensitive personal data on the treatment of cancer patients to a US company that works for a tobacco firm.

“But even if tighter NHS rules had been followed, the Department of Health still argue any patient opt outs wouldn’t have applied in this case. What are patients supposed to do?

“It is vital for public trust that uses of patient level data for purposes beyond direct are covered by the new opt out.

medConfidential supports an NHS cancer registry that follows all NHS data rules, and where the new opt out model applies to all patient level data for purposes beyond direct care. Every data flow in the NHS should be consensual, safe, and transparent, and that includes a well run cancer registry inside the NHS.

If you may be affected, what can you do?

If you are a patient with cancer do not make any treatment changes based on this news; but if you have any questions, talk to your nurses or support structures.

If you may be affected (ie you have had a cancer diagnosis), a request to the cancer registry to opt out will result in your data being deleted, which they admit will potentially harm your direct care in the future. We can not recommend you do this, but it is the only current option. Given the situation, we suggest you write to your MP, and ask them to ask the Department of Health what they are doing to fix this. 

You may wish to:

• Say why/how this affects you or your family – in as much/little detail as you wish.
• Ask your MP to, on your behalf, ask the Department of Health why your only choices are to have your cancer diagnosis given to companies working for tobacco firms, or to have your treatment history be deleted affecting the future care of you or your family. No part of that choice is appropriate.
• In short, why does data taken from the NHS not have to follow NHS rules?

PHE’s past failures are what they are – there are limited things that can be done to fix them. However, they can be brought in line with the NHS, and catch up to all the improvements that the HSCIC/NHSDigital has made since 2014 (although this failure could still have happened to them, and opt outs would still not have been respected)

Please also join our mailing list for additional information as this evolves over the next few weeks: