jgc :: digital scrapbook » health

Department of Health halting Summary Care Records

jgc — Fri, 23 Apr 2010 22:05:59 +0000

Since giving my thoughts on the NHS’s Summary Care Records scheme, I’ve discovered some more relevant news.

Partly at the urging of the British Medical Association, the Department of Health decreed a week ago that the roll-out should stop, “until appropriate professional and public awareness has been raised”.

Earlier the BMA had claimed that the roll-out was “too hasty” and criticised the lack of an opt-out form in the patient information packs as well as calling for a national publicity campaign on the SCR.

This seems an entirely sensible plan; unfortunately at least 9 Primary Care Trusts have decided to continue with their schemes anyway, though I don’t know why.

The NHS’s Summary Care Record – will it be secure?

jgc — Wed, 21 Apr 2010 23:27:28 +0000

I’ve been waiting for a particular letter from the NHS to arrive, and today was the day. You’ll get one too. It introduces the Summary Care Record (SCR) scheme which is being gradually rolled out across England, and in several phases.

I know a thing or two about the challenges of IT security, about big IT projects, and (according to a recent File on 4 report) that the National Programme for IT is not doing at all well with its multi-£billion aim to computerise all patient records. And I hear that the No2ID campaign, who are deeply against ID cards, are not surprisingly saying that there are privacy concerns about SCRs too. Taken together, I decided I should go through all the details carefully before deciding whether to participate or not, and publish my thoughts here, where hopefully others can find it useful.

I can summarise the pamphlet they sent me (and most of the SCR website) as:

it “will enable health-care staff to have quicker access to your records, including prescriptions and any allergies you have, so they can provide more effective care”
we take confidentiality very seriously, and only authorised staff will access what they need, and with your permission
we take security seriously, and things like chip-and-pin will be needed to access the SCRs
“You can look at your SCR at any time at a secure website called HealthSpace. You will be able to make sure it is accurate …”
but you can opt out if you want, and opt-in later again should you change your mind.

Sounds pretty good. And it needs to be, because how many people are going to bother to opt out? Pretty few, given that to do so you actively need to opt-out, by writing a letter or filling in a paper form (which you have to get someone to send you or download and print out), and then go and find a stamp and post it. That’s right, there’s no phone or online option. If you fail to do this within 3 months, then you will automatically have an SCR created, and will start to be used by NHS staff.

The site also says you can find more detail in The Care Record Guarantee, which I have downloaded and read. It’s not a right riveting read, but it does include important additional detail, some of which makes me think they know what they’re doing, but some of which worries me. See what you think …

Who can access data? The pamphlet says “they must be directly involved in caring for you”, which makes you think of doctors, nurses, and hospital specialists. But the guarantee says it will also include people who “keep track of NHS spending, and manage the health service”), researchers, health trainers (“to teach healthcare professionals”) and statisticians (“to protect the health of the general public”). That now includes those very indirectly involved in caring for you, including, it seems, general NHS managers. And these people can also include “Organisations under contract to the NHS”. I doubt anyone knows the exact figures, but I would surprised if it’s not less than 100,000 people with possible access to individual’s records.

When can they access data? The pamphlet says only with your permission. The guarantee adds various exceptions, including after serious crimes, to protect children, reporting of infectious diseases, or if a court says so — all of which seem reasonable. But in order to carry out the wider functions above, including checking record quality, those staff can’t possibly ask for permission, though the implication is that they won’t be able to see personally identifiable information. However, in emergency situations the controls can be over-riden, making all the controls weaker.

What sort of audit trail is there? The guarantee says “Every time someone accesses your record, we keep a record of who they were and what entries they may have made.” which is important and necessary. Encouragingly, it says that we’ll be able to see a list of everyone who has accessed or changed our records. But unless some event triggers this, inevitably the vast majority of the audit records will never be checked.

Where can people access data? Neither document makes this clear. But the fact that it’s available to patients themselves over the internet, means that effectively it is available anywhere in the world, not just at special terminals in surgeries or hospitals. (Where security is likely to be weak anyway, as strangers are always legitimately wandering around without access controls.) There’s also a baffling odd statement that “You must register for HealthSpace to keep [your SCR] as secure as possible”. Any ideas, anyone?

How can staff access data? Only with a smartcard and a password, says the pamphlet. Sounds reasonable, except that by itself this doesn’t mean anything. It’s very easy to have poor passwords and insecure smartcards: witness chip-and-pin, where retail fraud has increased not decreased after its introduction in the UK. A rule of security engineering is that it’s always possible to defeat authentication measures such as these, if the information is valuable enough to an attacker. Criminals can always buy access to apparently secure information in the Police National Computer, or the DVLA, for example. This will be no different.

Can you delete an SCR once created? It’s not fully clear. You can ask for it to be hidden from view to anyone, but to delete it entirely is apparently “difficult”.

Can some information be treated more privately? Thankfully, yes. But not yet. The concept of “sealed envelopes” will be coming in future years, and can limit information to particular health-care teams. But again, in emergency, this can be undone, which is probably the right thing to do, but again weakens the overall controls.

And finally, one question not covered in either document: How likely is the system to be implemented as designed? Almost no chance. Any huge IT project is difficult, and there are good reasons why healthcare ones are more difficult still. Oh, and one with hundreds of thousands of users, all who need training and enrolling and smartcards … lots can go wrong even without malicious intent on anyone’s part.

I’ve deliberately ignored various topics the guarantee covers, such as interim local standards, children’s SCRs and parental rights, and various help, advice and complaint procedures.

Overall, I think this makes the summary in the pamphlet that people are being sent misleadingly optimistic. For me the risks to my personal information being misused are much higher than the NHS suggests. So I for one will be opting out, until I see evidence that the promised upgrades have been rolled out well, early implementation ‘bugs’ have been squashed, and some of the ambiguity is satisfactorily cleared up. But if your health means very quick access to data by health workers could be important in the next few years, then I’d probably accept the risks of misuse.

(I also see that there’s a specific NHS Confidentiality campaign set up to urge people to take part in their The Big Opt Out. Though note that I’ve not looked beyond its front page.)

Picturing sleep

jgc — Wed, 10 Feb 2010 01:19:11 +0000

A previous boss taught me that “you can’t manage something until you can measure it”. You have to be careful to measure the right things, obviously …

… but I got thinking about how I use my time. At work I have to measure my time, though no-one knows quite how of why its used. But how I use my ‘spare’ time is important to me, so I decided to start measuring it. Then I’ll know whether I need to manage it better.

After some hunting and testing I settled on KronoX, a simple open-source application for Mac OS X to record what I do. I started by just tracking my sleep, and then moved onto the main types of chores, relaxation, ministry and (inevitably) my work hours. These are the things I could change; I’m ignoring meals, and getting up, and other things I can’t really do much about.

I started with my sleep patterns. Just how much sleep do I really get? Here’s one view of it …

(Hour intervals run 10pm to 11am from left to right. Amount of sleep in the hour is shown by how dark the blue colour is. The days go down the page.)

Nice graphic, but lots of not-very-encouraging holes where I wake up in the middle of the night. Further analysis shows that maybe it’s not as bad as it looks: I’m still getting on average of 7.6 sleep hours per night.

I’m continuing to work to produce more interesting analysis and graphs from this, but there I’ll pause for now.

Cheltenham 10k

jgc — Sat, 03 Oct 2009 22:13:36 +0000

This morning I ran in the Cheltenham 10k race. I was much less apprehensive, as I’d done one 10k before. But it was colder, and much windier than the Evesham Vale one back in July.

We forgot to take a camera to the racecourse, but here’s a picture of my race number and my medal. Don’t worry – I didn’t get close to winning anything! – they kindly gave a medal to every finisher. But I did manage to beat my previous time, and come in under the hour: 58min 15secs. I was dead chuffed, and quite a bit puffed too.

Well done to Bob, JJ, Rupert, Ian, Tommy and Hazel who also were running in it, most of whom finished rather more comfortably under the hour.

Which race to go for?

jgc — Fri, 11 Sep 2009 21:29:21 +0000

Hmm. There are 3 different 10k races close by in late September and early October. I don’t have the energy or commitment to do more than one. So, should it be Cirencester, Cricklade or Cheltenham?

Whichever, I do need to manage rather more miles a week. But at least I clocked up 100 running miles, since I started running again a year and a half ago.

I was interested to see how consistent I’ve been in time and distance, so I have learned a bit of the R statistics package. And here’s the result:

And here’s a little graph of which length runs I do most often …

Quite neat.

10k – the race

jgc — Thu, 10 Sep 2009 21:50:19 +0000

Despite it being two months ago, I feel I should post my thoughts on my first 10k race. The Evesham Vale 10k was (in my non-existent experience) well organised, and as I hoped good for a first-timer.

Before and at the start it was drizzling persistently, which made me nervous: was it going to rain throughout? But after a few km it had stopped, and the sun had come out by the finish, which was great for the celebrations.

There was much nervous milling around on the side roads of the town, with some apparently wasting energy by sprinting up an down. At 10:25 the High St was shut and we all then gathered by our respective speed groups. I was planning to beat 65 minutes, so it was discouraging to find the slowest time group was simply the “over 55 mins”. But I was from alone, and I landed up next to another first-timer — which was good until I realised she was wearing Lycra and surely was more serious about it all. It was curiously quiet waiting for the start, standing ten abreast, with a few brief sentences to be polite and ease tension. Then the signal to start and 700 of us began to jog an then run, now with only the sound of breath and footsteps.

My first mistake came at about 1km, when we ran past some tables with water bottles set out. I was a bit surprised, but grabbed one anyway, only a few seconds later realising that they were supposed to be for collection when we passed back the other way in about 4km time. I’d not run with a bottle before, and it wasn’t easy to hold or use. It stopped my thirst but it could have lost me some energy. Daft as I’d just bought an easy-to-hold runners bottle, but heeded advice not to use it for the first time in a race.

My other mistake was not having a basic watch on. I’m used to getting pace and distance info from my iPod, but headphones being banned that option was out. (Though a few flouted that rule.) So I was not sure what my time was until almost the end, when I heard the announcer urge finishers some distance in front of me to “sprint to beat the hour”. Despite finding km 8-9 hard work, I probably could have come in just under 60 mins if I’d pushed. I was still very pleased with my sub 10-minute mile average, and that I did it without stopping.

Will I do another one, or longer distances? I might manage a half marathon (about 20km) but at the moment I think I’d find the training just too dull. I get bored after about 40 mins even with interesting music an podcasts …

Perhaps the next challenge is to get Martha to join me. She used to be a very fast cross-country runner at school …

1% not 2%

jgc — Mon, 08 Jun 2009 22:23:29 +0000

That’s the % of fat in the milk we’re now trying. And to be honest we can’t tell the difference. So depending on the dairy, we’ll now be mostly buying orange or purple milk, not green. I doubt it’s really going to make much health difference, but I suppose every little helps … ching ching …

Health thoughts

More milestones

jgc — Fri, 29 May 2009 22:02:03 +0000

It’ll be a long time before I achieve this again …

In my run tonight I went further than before (6.4km), with a longer workout time (40 mins), and managed a personal best for the mile (according to dear old Lance Armstrong).

This still isn’t much set alongside my marathon-running colleagues, but it’s now part of my training (ooo errr that sounds grand) for the Evesham Vale 10K I’m going to enter in mid-July. If anyone would like to know more, please get in touch … it’d be more fun to run it with some others.

I guess I need to think of a charity to collect for. Though really I’m doing it just as a personal goal.

A new PB

jgc — Sat, 21 Mar 2009 23:04:24 +0000

It felt gooooood. I managed my longest run yet yesterday evening: 3.6 miles in 36 minutes. I got back early from work, and it was the first time it felt light and warm enough to make a run inviting. I headed up to the disused railway line, and got into the centre of town, before turning round. All in, I stopped only for a few moments at the point I turned round, which is far better than any other run this year. The last half mile felt particularly good, as I knew that I could make easily make it back, and I even picked up the pace a little.

This was more than 5km; if I can do it 4 times over, that’s a half marathon. Makes it feel more of a possibility …

Going veggie before supper

jgc — Sat, 14 Feb 2009 12:11:42 +0000

Following up on my recent post about Paul McKenna’s diet, have you heard of flexitarianism? I hadn’t either. But that’s a name that’s being put to the idea that we’d be better off going veggie until supper. Perhaps the largest argument is for ecological reasons, to help reduce cattle-produced greenhouse gasses, which should help reduce global warming. And it may help our health, too. More people are suggesting that our bodies aren’t designed to process as much meat as rich Westerners tend to have, and that we should take more to the Oriental approach of meat once a day (or less).

Mark Bittman’s new book, Food Matters: A Guide to Conscious Eating makes the case for this, and is apparently well worth the read.

I’d been meaning to find some more varied and healthier options for lunch than my usual high-carb meat sandwiches. This has prompted me to try having soups, noodles, and rice-based meals instead of those sandwiches. I went to the local Chinese supermarket to get some noodles, but I now realise I don’t have the facilities at work for cooking most of their noodles. Even finding a microwave is hard. Perhaps I should try to find healthy Pot Noodles, where you only need a kettle …