Is care.data safe?


#1

Karen S. asks (http://www.parkinsons.org.uk/forum/thread/58207) Is everything on the internet reliable information?

It seems that the only thing you will be able to trust on the internet will be your own medical records . . . once the government's sold them on.

The new care.data database brings together everyone's medical records. Mega datasets like this are extremely useful. It's the only way the non-link between MMR vaccine and autism was proved for example. Parkinson's researchers will find the data invaluable, and so PUK has joined with other medical research charities to champion the new scheme (http://www.parkinsons.org.uk/news/13-january-2014/new-opportunity-share-your-health-history )

But there are increasing worries about the privacy of our data, according to doctors and others writing to the Guardian (UK newspaper; http://www.theguardian.com/society/2014/feb/02/nhs-medical-records-care-data ). Far from being anonymised and aggregated, 'the government makes no secret of its intentions to sell whatever data the commercial market wants to buy. The table of HSCIC data linkage and extract service charges 2013/14 includes prices for selling identifiable personal data, specifically a "one-off extract tailored to the customer's requirements of specified data fields containing patient identifiable data, sensitive data items or both". ' says John Veit-Wilson. See it for yourself at  http://www.hscic.gov.uk/media/12443/data-linkage-service-charges-2013-2014-updated/pdf/dles_service_charges__2013_14_V10_050913.pdf

There is plenty in my medical record of "sensitive data", my PD status being only one of them. Do I allow anyone who wants to, to buy my personal records for whatever reason they like and damage my chances of employment, of my standing where I live, of my credit rating? Or do I deny researchers the chance to cure PD more quickly?

Or should I not have to make the choice?

Semele


#2

Hello

Thank you for your post. We understand that this is becoming quite a controversial issue at the moment. The NHS are currently leafleting households in England to inform people about the new scheme for using medical records including information on how people can withdraw their data if they dont want it included.

We understand that this is a very personal issue and everyone should be able to make their own minds up about how their medical records are used. We are encouraging everyone to find out as much information as they can before they make a decision.

Patient records are an extremely valuable resource for research. The information contained within them can be used to understand the causes of disease or to detect outbreaks of infectious diseases. It can help in monitoring the safety and efficacy of drugs. For more information about information on how medical records can be used for research and information on the new scheme please visit www.patientrecords.org.uk

We are aware of articles like the one in the guardian. NHS England have also responded to this article by saying, "no data will be made available for the purposes of selling or administering any kind of insurance and that the NHS and HSCIC never profit from providing data to outside   organisations."   http://www.england.nhs.uk/2014/01/20/guardian-story/  

It is very important that the NHS continue to communicate with the public about how data is being used and inform everyone of any changes. We will continue to work to ensure that they provide us all with clear information on a regular basis.


#3

I note today a newspaper report about a concerned GP who has told his patients that he has opted out for his surgery and patients need to opt in if they  want their data shared

He has been castigated by the NHS busybodies and told to withdraw his opposition.

How very Big Brother,


#4

Hello Rachel

I'm no conspiracy theorist or, normally, deconstructivist. But NHS England's response strikes a chill.

The issue is not about NHS and HSCIC profiting from providing data to outside organisations. Indeed, if my personal information is to be sold on, I'd prefer it if NHS were the ones to profit, rather than the (presumably commercial) outside organisations they're selling it to.

And the repeated insistence by NHS England that they won't sell my personal information for the "purposes of selling or administering any kind of insurance" is too neatly-constructed a phrase to be at all reassuring: the only construction I can put on it is that it'll be OK to sell my data to anyone else for any other purpose, and to insurance companies to do anything they like so long as it's not "selling or administrating".

Neither assurance changes the basic fact: NHS and HSCIC clearly envisage selling my personal medical information with my name and NHS no attached and details of my "sensitive data." Who could possibly want to know that stuff about me personally unless they intended me harm?

And by the way, you've got four weeks only to opt out. And the leaflet doesn't tell you that.

Semele


#5

Hello

Thanks for your comments. I do understand that the information the public have been given is not that clear. We will continue to work with NHS England to encourage their continual communication about the plans for any data collected on a regular basis. It is important that any supporting information from the NHS is clear about who will and will not have access to the data and that they reassure the public on these issues.

If you do feel uneasy about including your data in this scheme please speak with your GP to opt out. This is a very personal issue and we understand that each person has the right to control how their data is used.

Best wishes,

Rachel


#6

Thanks Rachel

As you say, the key is how clear the information is - and it isn't. It doesn't help when you read statements like "Do you sell data? No. we share it at a fee to cover our costs." Disingenuous or what?

Please do all you can to get this Plain Englished.

Best wishes

Semele