I’m guessing we should all have had a leaflet through the door about a data sharing thing the NHS is doing, and saying we can opt out if we want to. Has anyone decided what they’re going to do?
At first I thought I was happy for my data to be shared. But then Iread this website by a GP, and am now having second thoughts and will probably opt out- http://www.care-data.info/
If anyone does decide to opt out, you need to act quick though as youv’e only got until the end of the month.
Dan
Hi Dan,
This is one where having MS did influence my decision - to stay in.
Back in the days when I was fit and well, I probably would have thought my privacy was the only consideration, and opted out without a second thought.
However, since I developed MS - or at least, since I knew I had it - I’ve become concerned about how little accurate data we have about how many people even have it!
I don’t see how this or future governments can possibly plan what resources we’re going to need, if they don’t keep track of how many of us there are, or what the pattern of needs is. I’m sure I’ll be among the first to moan if I need specialist MS care, and find there isn’t any, because successive governments didn’t have enough data to foresee the need, and were working on guesses.
So I felt it was in my own interests, as well as those of MSers generally, to stay opted in, as I would like there to be some official record that we are out here, and how we’re getting on, and what we need. Also, hopefully, over time, a better picture of what treatment people received, and which worked out best - to inform future recommendations.
I won’t say I have no reservations at all about confidentiality issues, but in the end, I thought making sure my case was represented in the statistics was more important. Do I really care if they sell my data on to a third party research company? Not particularly, if that company is working on new MS treatments. I would be pleased if I thought my data would be of any use in that respect.
I’m not worried about the data being leaked to insurance companies etc, since we already have to disclose if we want to be validly insured anyway. If I really think about it, I’m not sure there is any person or organisation I would mind knowing I have MS.
If I was that paranoid about it, I probably wouldn’t post here, for a start. I’m sure I’ve given (unintentionally) enough hints for a dedicated snoop to personally identify me by now. They would know my real first name, roughly where I live, what hospital I go to, how old I am - and there are not THAT many people with MS. If they sifted through all the data that exactly matches, they might well end up with just one name - mine! So I really can’t get too upset that somebody I haven’t expressly told might “work out” I have MS.
I’ve started coming clean about it on college admission forms, and other red tape where you’re asked about any disability, so really, what’s the big secret? Lots of people already know - because I’ve told them. I probably wouldn’t lose sleep if a few more did.
Tina
Conversely to Tina on this occasion, I specifically want to chose who knows about the state of my health - so I’m going to opt-out !!
Bizarre that I already get unsolicited email and post all the time, but never received the NHS leaflet referred to ?
Anyhow, from what I’ve read, I can choose to ‘opt-in’ whenever I decide to in the future (…but I understand that once you ‘opt-in’, that decision can not be changed subsequently.)
I’m sure there will come a time when I’m grateful for people making decisions on my behalf, but I’ll want those decisions to be made by people who know me (…close friends or family etc.), not complete strangers …and I honestly feel this could be a real risk with an impersonal thing like an NHS database ?!
Sorry folks, but this is just based on personal experience and how various family members with different medical conditions have been treated in different parts of the UK (…and the NHS has such a fantastic record with computer databases, doesn’t it?)
Dom
Dom,
This is a completely separate thing from planning your care. Confusion might arise because there is another, unrelated, initiative, confusingly launched about the same time, called summary care records. Summary care records just enable different NHS departments or individuals to get quick and easy access to basic healthcare information about you. Frankly, I’m surprised this wasn’t already possible, but for example, if I was admitted to A&E following a road accident, as I had the misfortune to be, not so long ago, they could call up my records and see that I already had MS, and that I needed baclofen, and that sort of stuff. It could also be used if I move and change hospitals, so I wouldn’t have to relate everything from scratch.
Care.data is a completely different concept. It is about planning for the future, but not your future, specifically. It’s about collecting anonymised data, to analyse the needs of the population as a whole, so they know things like how many hospitals they need, which conditions are on the increase, and things like that.
The privacy concern is that it might, hypothetically, be possible to trace some of the “anonymised” data back to you, because it could have enough unique identifying features that it could be mined to deduce the subject must be you, even though you would never be expressly named. I think most people’s worries would be about insurance companies, lenders, or prospective employers potentially being able to work it out. But as insurance companies require full disclosure anyway, and lenders aren’t allowed to discriminate, I don’t think the first two are a big issue. Employers might be more of a concern, but it depends what your attitude is to disclosure anyway. If you are visibly disabled, it’s going to be apparent if you get as far as interview stage anyway. So again, I don’t know how much of an issue it would be in practice. And besides, with so many job applicants to process, are many employers going to throw money at researching each and every one, to see if they might have a health issue? It seems possible, and yet not very likely.
But it has nothing to do with deciding your care. Wouldn’t anyone legitimately involved with that already have access to your health records anyway? If they didn’t, then they shouldn’t be making any decisions about you, without having the full picture.
Tina
I threw this on the ‘not worth spending a second of sweet life bothering about’ pile. It is a big pile, and one of the advantages of getting older is that I am getting better at throwing things on it without a backward glance.
Alison
I knew nothing about this - we haven’t had any leaflet though our door! Donna
Sorry, Dom, I’m with Tina on this and for exactly the same reasons.
And, for Dom and Donna both, the leaflet should have been sent out by your GP Surgery in 2012 (and it gave you several months to respond if you wanted to opt out).
Personally, I reckon Facebook is a far bigger security risk, and (with today’s news) the big banks not far behind.
Geoff
I will not be opting out of it. As Tina has said, it will allow the health profession to access my records where ever I am. Some GP surgeries already do this, but they are far and far between. I move around the UK quite a bit and if I needed to attend a hospital other than where my neurologist is located, then receiving the right treatment may not be possible. I currently hold records at three hospitals and getting the information from one to the other has been frustrating in the past and each time, I end up informing them of my entire history which would be less time consuming and reliable if these records were shared. When I attended physiotherapy before my diagnosis at a GP surgery, he had my entire record and the process was much easier; he was able to see the whole history of my fracture from two hospitals whilst in a different city altogether.
Another benefit of this is that it will allow research to be conducted upon the correlations of medical histories which may allow us to understand health problems and patterns clearly. This isn’t possible anywhere except for the UK as we have the NHS.
As far as the privacy issue goes, I am fairly open about it. I appreciate that other people may not share the same view and may have more sensitive health problems which you don’t want accessible. But I believe that the time and effort that people or companies would have to endure to associate that with you personally would be such a timely and unethical ordeal that it will mainly be steered clear of.
And I’m totally with Geoff, too. Social media is by far a larger resource for anyone seeking out private details of anyone.
I think this guy (from Computer Weekly) sums up the pros and cons quite fairly, and explains why he will still be opting in - or rather, NOT opting out - as opt-in is the default.
I’m not trying to sweep confidentiality concerns under the carpet. I do agree with him it’s all been gone about the wrong way: permission to share and use your personal confidential data should always be opt-in, meaning it requires your active consent, and can’t proceed by default. And you should be able to revoke that consent at any time, and insist records about you are destroyed. The main means of communicating it to patients should NOT have been by door-to-door “junk” mail, which many people, like Alison, will simply have thrown away, not realising failure to act amounts to waiving some important rights - and, what’s more, is irrevocable. You can’t withdraw consent later, on grounds you never got/read the leaflet.
And finally, I do agree it’s unclear what it can - and more importantly can’t - be used for. Possibly part of the reason for this is it’s impossible to predict uses to which it might be put in the future, using technology we don’t yet have. So it would be pointless setting out only what it could be used for now, if that might be subject to change at any time, but patients wouldn’t have the opportunity to change their minds.
A good idea, badly executed, IMO.
Tina
Hi Freya,
Sorry for any confusion.
No, it won’t allow the health profession to access your records wherever you are. That is a completely unrelated scheme called Summary Care Records, which you should have got info about, direct from your GP surgery (and personally addressed, so NOT looking like a junk mail).
This other thing is called Care.data, and the only notification about that was a piece of “junk mail”, which you may either never have got, or put in the bin without reading.
The two schemes are completely different: Summary Care Records do NOT allow data analysis to be carried out on patient health records for the purposes of planning and medical research. Care.data does NOT make your individual records available between different doctors or different hospitals.
One scheme does one job, and one does the other. The concern with Care.data is that the anonymised data could be sold to third parties outside the NHS (not true of Summary Care Records, as far as I know, which would always stay within the NHS). There is concern that even though the data collected through Care.data would never have your name on it, it would not be so heavily disguised that it would be impossible for anyone ever to work out it was you.
I do think this is another bad thing about the way it’s been done: people aren’t aware it’s two different schemes, and you don’t have to answer the same to both. You can agree to one, but not the other, or refuse both.
Hope this helps, and hasn’t just made it more confusing!
Tina
The plans appear to have been delayed until later this year, but further details are not yet available.
Tina,
Many thanks for the clarification!! Not for the first time, I completely misunderstood …seem to have merged the two databases into one in my mind.
I used to be mentally a lot sharper and a lot clearer in my thoughts. Sometimes, when I get ‘confused’ by straightforward things, I almost feel like crying.
Think I’ll just shut up for a while now
Dom
Oh! 
Thanks for clearing that up, Tina. I guess I just proved that they need to be more clear about this.
Sorry, certainly didn’t mean to embarrass anyone!
Yes, it has indeed just proved they need to be a lot clearer it’s not all one big scheme, and that they will have completely different aims and uses. Saying no to one does not mean you’ve also said no to the other.
Honestly, what a fiasco!
I’ve had a very similar convo on another forum recently - nothing to do with MS, or health or anything - just a general chit-chat, often about current events. They too were unaware there are two separate schemes. It’s clear the message isn’t working.
Some believed they’d already opted out of Care.data, because they’d opted out of Summary Care Records. They didn’t realise it was two separate decisions, and your answer to one wouldn’t be carried over to the other.
I can’t really think of any good reason to opt out of Summary Care Records, as they look like they would only ever be a positive thing for the patient. Who wouldn’t want a new doctor or hospital to be able to quickly and easily access key facts - especially in an emergency, when you might not be able to tell them yourself?
I think the Care.data is slightly more controversial, as it probably has no direct benefit to you as a patient, but if enough people cooperate, it could have huge benefits for health planning and research - i.e. society generally. In the end, it’s all down to whether you think the exciting future possibilities (for example that they might gain an insight into the causes of MS) outweigh any concerns about confidentiality - or the possible breach of it.
Tina
I take my previous comment back, it seems we did receive that leaflet a long time ago. I hadn’t made the connection. Thank you for drawing my attention to it. I will now do some further research and make an informed choice. Take care Donna
Further to Whammel’s post, they appear to accept they’ve mucked up the communications, so it’s been delayed 'til the Autumn, to allow for a publicity campaign.
You will be hearing more about it. 
Tina
Well, that provoked quite the debate! I think for now I’ll opt out - I can always opt in at a later date. But once you’re in there’s no going back, so I think I’ll bide my time. Like I said in my original post I’d normally be happy to go along with it, but my GP surgery is opposed to it and is recommending opting out. The link that I gave was provided by them, and the everything on the link was written by a GP. So if the doctors that I trust are opposed, then I’m inclined to go along with them for now.
Dan
I think this article by Ben Goldacre makes useful contribution to the debate.
http://www.theguardian.com/society/2014/feb/21/nhs-plan-share-medical-data-save-lives