The recent announcement that data from individuals’ GP records would be shared with researchers inside the NHS – and potentially outside – was controversial.
You don’t say?
In this week’s Scrubbing Up, Prof Peter Johnson, Cancer Research UK’s chief clinician, says while the decision is up to each of us, population data like this is crucial for making progress in tackling diseases.
Quite possibly. However, sometimes we don’t do things that will make things easier because they go against basic ethics. The priest’s confessional is an example where information remains confidential irrespective of the outcomes of not sharing the information. The priest will keep it to himself come what may. Likewise we have always expected our doctors to adopt a similar approach to our personal and private information. Until, that is we get care.data. Then ethics be damned.
But using our records for medical research is not about some sort of free-for-all with people’s data.
Maybe not. At the moment. However, what about the future? Can we be sure that information, once released from the sanctity of the surgery will not be flogged off to whoever comes up with the money? Of course we cannot. The only way to be sure is not to release the information in the first place.
It is about doing the right thing and using the information that we collect in the NHS to benefit patients in the future.
I agree. The right thing in this case is to absolutely protect patient confidentiality and to not share the information with anyone not directly involved with that patent’s treatment. There is no need to do so anyway – irrespective of what various government groups and fake charities might say.
We need the proper safeguards, and I am as sceptical as anyone about the idea of selling the data outside the NHS, but that is not a reason to discard the whole idea.
Yes we do and yes it is – and given that this odious little scheme is a done deal, the only way to ensure that is to opt out.
But without access to people’s records to track how a type of treatment works this is a wasted opportunity.
Then find another way. Maybe specifically ask those patients if you may have access to that specific information. You do not need my information for example because I am not a cancer sufferer.
However, they are under serious threat from legislation in the European Union.
Well, fine. Leave the EU.
Ah, yes, I see….
The registries collect data from cancer patients automatically, although patients can object to their details being shared.
Quite right too. I would object.
Under the new European Data Protection Regulation, this would become illegal and we are worried our national cancer registries could collapse completely.
Er, tough, frankly. We could always leave the EU, I suppose…
It’s your data, it’s your decision.
Yes, it is and yes, I have. I have opted out. I would advise anyone I meet to do the same. Indeed, I have done so with some success, I might add. When they are made aware of this plan to share our information, people are horrified and rightly so. Interestingly, many people are simply unaware of it because it is being sneaked in with minimal publicity. I wonder why?
This can be a huge force for good, if we get it right.
It is not a huge force for good. It is an abomination.
We need to make sure that we have rules to protect us properly, but at the same time make sure we can carry on with essential research.
Rules get broken, laptops get left on trains, USB sticks go missing. There is only one protection and that is not to allow the information to be released in the first place. Opt out and opt out now, while you still can. Professor Johnson can take his greater good argument and stuff it up his fake charity.
It was, presumably, cancer data collected under the old system that has led to serious misdiagnosis because the patient ‘didn’t fit the profile’ and the mistaken and widespread belief that all ‘lifestyle’ cancers are preventable. The whole argument in favour of data harvesting is built on a tacit – and, as I see it, flawed – assumption that the result will be of unmitigated benefit for all.
Even if the statisticians handle it properly, the fruits of their labours will be implemented by policy-makers and managers whose Procrustean attempts to make patients fit their data could well have untold human costs. Not only is this intrusion unwarranted and unwanted; it is based on false pretences.
At least someone in the medical profession is fighting back…
A CITY GP who has vowed to defy controversial NHS plans to collect patient data said he is prepared to fight the ruling through the courts.
http://www.oxfordmail.co.uk/news/10996874.GP_vows_to_take_battle_with_the_NHS_through_the_courts
And good for him. All it takes is one good man prepared to make a stand.
I might be more sympathetic to all this data sharing if the insurance companies, pharmacutical companies and medical research groups who are all clambering for this data actually offered to pay ME what what is my data in the first place.
Why the f**k should I agree to share my private information just so that the NHS and the Government can make money from selling it? It’s my data, pay ME the money for Christ’s sake! I fancy a new car…
Quite.
They must collect the data to see if you as an individual is cost effective. This In there face of an ‘ageing population’ there will have to be an evaluative process as to maintaining non tax paying life.
This will enable to divert the tax stream into the preservation of those with proven abilities in the government and such like.
Much the same should ensue with breeding rights for those with established social abilities.
You kinow it makes sense.