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Unless you tell me otherwise, I'm going to assume you agree with me.
NHS in general
Member Name: theda
NHS in general
Advantages: Will improve standards of NHS care
Disadvantages: Security and data integrity concerns
Like many people around the country, this week I received notification of the NHS Summary Care Record initiative. This will see medical information on anyone registered with an NHS GP practice entered onto an online system which will be accessible by NHS staff in any location.
It sounds like a good idea in theory, and the benefits sound impressive:
- If you need treatment, NHS staff will be able to access details on any medication you are taking and whether you have any allergies, to medication or other substances. They will only be able to access your record with your explicit consent.
- You will have access to your own record and will be able to access online appointment services to make your own hospital appointments (I like the sound of this very much). You will also be able to set controls to limit access to some of the information on your record, in a similar way to Facebook settings.
- Initially, the records will only hold information on current medication and allergies, along with personal details such as name, address, age and NHS number. You will able to include any other information you wish, such as past or current illnesses and conditions. This will save you from having to rehash your entire medical history should you be anywhere but your own GP's surgery.
Well that is just common sense, surely? One of the most frequent criticisms of the NHS is that the right hand doesn't know what the left hand is doing. Centralising information will result in a better service overall.
Inevitably, though, there are also counterarguments.
- It won't be secure. They will do all that they can to make it secure, but it won't be. However good the security is, there is no way to make any system completely inviolable and even if there were, it would still be open to abuse and errors from those with access to it. How long do you suppose it will be before someone copies a load of records onto a disk and then leaves the disk on a train?
- The data entry will of course be a manual process, and this is only ever as good as the person sitting at the keyboard. A relative of mine was recently given a letter to take to her hospital consultant which stated that she'd had a hysterectomy in the past two years, which was news to her (you'd think she'd have noticed something like that). This does not exactly instil confidence, and since you will have access to your own record, the onus will be on you to ensure that it is correct. According to the SCR website*, updates will be subject to quality control checks, but the volume of data makes this unlikely to be a practical solution. Let's assume that on average, each person visits a doctor or other health professional four times a year. With a population of sixty million, even if only twenty percent of those visits result in a record being updated, that is just over 13,000 updates PER DAY. It's not feasible to expect that any but a small majority of these are going to be checked by anyone else, so it's going to be up to you.
- It's going to be VERY expensive - up to £12.7 billion at last count. No, that's not a typo.
- Logistically, it will be a nightmare for NHS staff who will need to ask for your consent - presumably in writing - every time they need to view your SCR.
- The words 'It will initially cover three areas' are highly suspicious, as this can only mean that at some future time it will be decided (on our behalf) that the SCR should contain more details, whether we like it or not.
So you're probably sitting there thinking 'well, it sounds like it could be a good idea. I'll have a think about whether I want my medical history floating around in cyberspace, and then I might sign up'. Here's the catch:
You are already signed up.
Let's repeat that for the benefit of those not paying attention at the back:
YOU ARE ALREADY SIGNED UP.
You are assumed to have consented unless you opt out. If you don't do this, you can't change your mind and opt out later as once your record is created, it can never be completely removed; it can be overwritten with a blank record, but the underlying data will still be there.
In order to opt out, you will need to download a form from the website, pick one up from your GP or send off for one using the form provided (this takes 2-3 weeks). Of course, they could simply include the opt-out form - which could have space on it for all family members - with the letter; one suspects that they are aware of the reservations that many people have and are making the opt-out system as difficult as possible. My PCT is part of the second wave of the roll-out and has given a deadline of June 10th 2010; unless I notify my GP by then, my record will be created, even though this may not be until September 2011.
Of course, I'm not under any illusion that my medical history is going to be of interest to anyone but me. If the system is hacked into, or unscrupulous NHS staff are sneakily looking up records without permission, they're hardly going to be interested in a rather ordinary thirtysomething mother of two. It's just that I have this image in my head of the whole thing being a kind of bloated medical Wikipedia with 60 million pages; you won't know who has access to your record, anyone who can access it can update it, and if you want to make sure everything on there is correct, it's up to you to check it. I have enough on my plate without having to look in every couple of weeks to make sure that my record doesn't have someone else's blood test results on it because the person who entered the data was a bit hungover (you KNOW this is going to happen).
So I'm going to be opting out. The system may sound like a good idea, but it's not going to be anywhere near perfect, and if that's the case - what's the point?
Summary: It's a personal choice.