Dame Fiona Caldicott, who is scrutinising the government's plan to hand NHS patient records to private companies, today gave the proposals the thumbs-up - with a few caveats, naturally. The noted psychiatrist's review [PDF] of the data-sharing scheme was published just minutes ago. Her report, drafted in March, follows Health …
Instead of asking for patient consent ...
Just ask them for their FB account id. If it's possible to pull personal info from that, assume the individual has no interest in personal security. If they refuse to hand over the account details, don't have one or ask "What's Facebook?" then button 'em up, tight.
At the worst, it might give some people a well-needed lesson in personal security.
On one condition
"It doesn't mean anyone can look at your health records, but it does mean using anonymous data to make new medical breakthroughs."
Fine, take our medical data but any medical breakthroughs gained through must unequivocally become public property as soon as they are discovered. If the industry gets access to our information for free then we should have access to their results. If they want to the privilege of charging us for results gleaned from our data then they'd better be prepared to pay us for our data.
Each and every one of us.
Re: On one condition
Yes after Face B. we can have Neck Book, Torso Book, Gonads Book etc. Enjoy.
BT already do, sort of.
BT run the 'Personal Demographics Service' on the Spine. The PDS is a big database containing the demographic (non medical) details of everyone in England.
See http://systems.hscic.gov.uk/spine and http://www.globalservices.bt.com/uk/en/casestudy/nhs_spine.
To be fair, it is necessary, otherwise how would:
- Screening services know which address to write to you at
- Your hospital know who your GP was to send clinic letters to.
- Your children be able to receive routine immunisations, even if they change school.
Re: Tap Water.
I await my cheque from glaxo skb :-) Very fair point though.
If we are talking about sharing medical records with say bupa, then fair enough if it is the record of a patient who they are treating. Even sharing anonymised records, with consent, with university research is vaguely understandable. Wholesale sharing of patient data with for profit companies needs to be opt in & a two way street (i.e. if a company accesses your record they pay any prescription charges you have for X years) or in true tory fashion you become a shareholder in that company. Giving them info for free, when its opt out, then paying the company for the treatment you assisted in developing, that smells a little off.
provided "permission" has been given
should have the right to opt out
must be done in a measured way
secure the safety of records when a provider’s contract comes to an end
prevent inappropriate sharing
promised that the government's data grab would "not threaten privacy"
All looks swimmingly fine doesn't it? However.... Can anyone remember any instance where such statements have actually turned out to be true (and effective)?
Caldicott is back!
I'm glad that Caldicott is updating her guidance from the 90s.
You should see the mess that is Information Governance in the NHS. Despite them having ridiculous amounts of data (medical records, financial records, performance records, etc) IG is still seen as a manual process following guidelines laid down by Caldicott after her review in the 90s.
CHALLENGE: Try and make it though the mandatory IG training at https://www.igte-learning.connectingforhealth.nhs.uk/igte/index.cfm?guest=open
Apart from being deathly boring, it's also out of date, using examples like faxing things to India, and recommending password management policies that are simply not usable with the number of systems staff have access to these days.
Updating this to cope with networked computers and databases is A Good Thing and The Right Answer.
Re: Caldicott is back!
Yep - that's a piss-poor training resource! Not only out-of-date but horribly constructed. Someone took a Powerpoint presentation designed for a face-to-face session and just added some words. I love the timeline in the introductory session that goes 1997>2004>2006>2000!
"Prime Minster David Cameron said he wanted to make anonymised versions of medical records available to researchers and the private sector."
This makes me almost irrationally angry. These records are extremely personal and are between a patients GP and them (and when necessary hospital DR's etc) I really don't like the idea of them being randomly made available to private companies anonymous or not. Mr Cameron needs to be very careful here, his desire to hand everything over to his private sector buddies could backfire in his face. At the very least he's asking for my foot up his ass.
I will however agree with the above that if this is used for 'important' research and all of the data gained becomes public domain then I would be more happy.
You may wish to avoid reading http://www.hscic.gov.uk/sus then, as audit and research based on anonymized data have been going on for decades.
That's more general auditing information than is being proposed though from my understanding.
The company Dr Foster have had access to detailed hospital records for years. They use data on every single admission in every single trust (e.g. hospitals) in the country. This is how they calculate their hospital standardised mortality ratio (HSMR).
It's just a pity that 4 weeks into the HSCIC handover they are still not in a position to relay data to any of the consumers because they 1) they can't make their mind up how to do it 2) they didn't take into account the complexity of all the data sources and 3) they lack the skill sets to implement any solution.
All the while the CCG's, CSU's etc are unable to commission because they don't have any data to play with.
It's an absolute shambles.
I agree - the whole DMIC exercise has been totally ill-thought-through!
DMICs have needed to be 'seconded' into the HSCIC in order to process data legally - all because the s259 exemption was not granted.
DMICs going private in 5..4..3..2.....
It'll never happen
The NHS is a collection of unions, some real, some masquerading as professional bodies (BMA, RCN, etc). All unions and guilds know that knowledge is power and sharing knowledge diminishes that power. So I expect a protracted proxy fight over 'privacy' over the coming months and years with every union member involved learning to spout a standardised list of privacy horror stories .
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