Sunday, July 20, 2014

Should we have a database listing people's vaccination records?

This morning I saw a tweet from Julie Leach:

 The link was to this web page, about "[how] Immunization Information Systems (IIS) Help to Increase Vaccination Rates". I retweeted, then added a comment: "@JulieLeask great web site. Shame UK didn't publish the standards document I was involved in developing." (A Department of Health working group put a lot of work into developing new standards for child health information software, and was about ready to publish these when the group was disbanded for reasons I don't fully understand.)

I was brought up short slightly when I saw this tweet:
Given my views on the DRIP - more or less in line with Julie Powles' views, as expressed in the Guardian, and malterwitty's views here - why should I be so complacent about the idea of recording people's vaccination status on a huge, national computer system?

Well, first, I have to say that medical information should be "medical in confidence", accessible only with those with a need to know, for the purposes of ensuring an efficient and effective vaccination system, and only as aggregate data which doesn't identify individuals' vaccination status unless there is a need to know it. It should not be available for other purposes. I blogged recently about reports that the Home Office had - illegally in my opinion - used health data "to help track down illegal immigrants". I think this was a criminal act; and any such use of immunisation data should in my opinion end the career of those responsible, and lead to criminal sanctions.  See below for further thoughts on this.

If data are used appropriately, however, then systems are essential for ensuring a good immunisation system.

Most people want to be vaccinated, and to have their children vaccinated, recognising that vaccination is the best way to protect their children: vaccination is incredibly safe: any risks pale into insignificance compared to the diseases the vaccines protect against. Some are hesitant: they may have read or heard misinformation (or plain black propaganda) that makes them anxious about vaccine safety, but are happy to go ahead once they know the truth. A small minority have an irrational fear of vaccination, and refuse vaccination. Most people who don't get vaccinated (or get their children vaccinated) do so because they're never invited to an appointment for vaccination, or because the appointment they're sent is too inconvenient. Ideally - and this would require good information systems - anybody who isn't fully vaccinated would be offered vaccination whenever they have contact with health care systems.

Information systems are vital for identifying the groups of people who aren't getting their vaccines. This isn't to stigmatise or otherwise attack those who have made a decision not to proceed; it's in order to work out what's going wrong. Are the appointments not being sent out? Are the appointments not being provided in a way that makes them accessible? What is the best way to offer vaccines so that those who want them can get them easily?

People often can't remember what vaccines they've received. As vaccination may have been done by any one of several different providers - and this is likely to become even more the case now that the government is selling off the more profitable parts of the NHS as fast as it can - it can be very difficult to identify the provider who administered a vaccine, even if you know something was given, to ask them to check their records. Without a central database the alternative may be repeating vaccines that had already been given, because you're not certain whether they'd been given. This is unlikely to cause harm, but it's a poor use of resources.

Scares about vaccines are common, for all sorts of reasons - mostly people mistaking temporal association ("we realised he had autism shortly after his MMR jab") with causation (we know that autism becomes apparent at about the same age as when the MMR jab is given; but the MMR jab does not cause the autism, it's just "temporally associated" with it). In order to understand whether or not the scares are based on a true causal association (the bad outcome is caused by the jab), we need large datasets (if the alleged outcome were common it would probably have been picked up by the drug testing process; so large numbers are required to be certain). The best way to do this is by being able to link datasets of people who have, or have not, had the vaccine, with those in whom the outcome occurs.

We also need to be able to study the effects of vaccination for other reasons. The HPV vaccine, for example, was tested in trials that used three doses of vaccine. Because the programme was based on the known facts, it had to use three doses of vaccine. But it seems very likely that two doses of vaccine will provide perfectly adequate protection - certainly for the first 10-20 years (when a booster could be given if necessary). By tracking outcomes in people who've been vaccinated - and knowing how many doses they've had - we'll get more information about how many doses are really needed, and what their timing should be.

Should people have a right to withhold their data?

Immunisation is not just a personal decision. Society depends on individual immunisation to ensure herd immunity that will protect the wider community. Some people cannot be vaccinated, or will remain unprotected despite immunisation (no vaccine is 100% effective). I take a rather unfashionable view, here. It is an immense privilege to have access to free health care and vaccination. With this privilege there should be some responsibilities. One of these should be a duty to permit personal data to be used for the sort of purposes I've described - with strictly enforced safeguards against the data's misuse.

What safeguards should there be?

As I mentioned before, the abuse of NHS data to "to help track down illegal immigrants" is appalling, and medical data should be guaranteed free of such abuses. Safeguards may need to exceed those in the Data Protection Act. There seems to be some lack of clarity as to whether medical data can be accessed for any criminal investigation, or only when the access may help prevent "serious harm".

It seems to me to be so unlikely that computerised health record databases could be used to prevent serious harm that I can see no justification for permitting their use in this way.

(This would not prevent disclosure by medical practitioners of an individual's record if it were needed to prevent serious harm - following due process, including a court order, or - if the level of urgency requires this to be done without one - a demand from a very senior police officer, with automatic judicial review every time this is done, and the certainty of serious sanctions against the officer if the demand were deemed significantly inappropriate.) 

Tuesday, July 15, 2014

Home office accessing NHS records

I was very disturbed to see reports such as this one in the Guardian, saying that the Home Office has been routinely accessing NHS records "to help track down illegal immigrants".

This is an appalling breach of trust. Laws have been introduced to permit other government departments to access NHS records; but only when this is necessary to solve or prevent very serious crimes such as murder. Being an illegal immigrant clearly isn't covered by these laws.

When I was a GP it was extremely clear: the fact that an individual is registered with your practice is confidential information; the fact that an individual has had contact with the practice is confidential information. That information may be shared within the health system for various necessary reasons; but to share it with another branch of government without a court order would be professional misconduct that could (quite rightly) get you struck off.

I wrote some guidance for a health authority on this some 10 years ago, and have remained interested in this issue. The “rules” on who’s entitled to NHS care are illogical and perverse;1 but they are often implemented by “counter-fraud” officers who put in place illegal barriers.

I have encountered problems associated with this many times as a CCDC. People used to be identified for screening for TB if they came to the UK from a high prevalence country and expected to stay for at least (IIRC) a year – the threshold was definitely greater than 6 months; so these people automatically met the criteria for free primary care. We would write to these people, explaining how to find and register with a GP practice, and asking them to do so, and to report to the GP any of a list of signs and symptoms suggestive of TB.

We frequently got letters or calls from these individuals saying they had tried to register with a practice, but had been refused registration.

So we changed the letter. We added something along the lines of “please take this to a GP practice and show it to the staff there”, explained in the letter that the immigration officials had already declared (by writing to us) that the individual exceeded the eligibility criteria for primary care, and asked practices to contact us if they were uncertain about whether they could register the patient.

It didn't make much difference.

We added a follow-up letter to send to GP practices explaining the rules, with links to the legislation and DH guidance.

This made a little difference; but many practices refused to change their practises.

When we contacted practices who had refused these people - who clearly met the criteria for registering for NHS primary care - they referred us to PCT fraud officers2 who insisted that practices must not register patients who could not provide proof – in the form of e.g. utility bills – that they had lived in the UK for at least 6 months prior to their being registered. Despite the fact this obviously excluded many people who were legally entitled to NHS primary care.

The context of course, has been a background in which the Daily Mail and other tabloid press and others were campaigning vigorously with appeals to emotion (despite the contrary evidence) against immigrants; and I have to say that quite a few GPs expressed quite strongly anti-immigrant, racist views to me.

I think it entirely inappropriate that GPs or other doctors should be involved with making this assessment at the point of clinical contact; and (partly given their track record of failure to understand the rules) I don’t think that practices should be, either. If we’re going to go down the route of policing eligibility in the health system, I'm not sure how we should do it: maybe (as I wrote in - I'm sorry - a very similar, previous blog post) we should be asking another branch of government to issue “entitlement cards” or similar to indicate who is entitled to what. But this is NOT a clinical decision, and it should be kept out of the consulting room.

  1. Did you realise that eligibility is based entirely on “residence”? If you retire to Malaga after paying National Insurance and a high rate of tax for 45 years you are no longer entitled to NHS treatment if you visit the UK? Whereas, if you visit the UK as a student, with the intention of staying for at least 6 months, you are entitled to free NHS primary care from the moment you arrive? And of course, whoever you are, if you have one of a list of infectious diseases, you are entitled to have it treated, free, to protect the rest of the community.
  2. Time had moved on since I first wrote the guidance; by this time Frank Dobson had ill-advisedly abolished health authorities and created primary care trusts.3
  3. English PMB. The market delusion. BMJ 2010;340(may11_2):c2522-  PMID: 20460326. 

Sunday, July 06, 2014

The advance decision not to attempt cardiopulmonary resuscitation

Decisions to start cardiopulmonary resuscitation (CPR), or to decide in advance to issue a "do not attempt (cardiopulmonary) resuscitation" (DNAR) notice have always been a hot topic in clinical medicine. It may have become even more so since a recent (June 2014) court decision.

This conflates many issues, including:

  • The fact that CPR may be valuable in patients who have a treatable cardiac event (though the success rate is considerably lower than many people believe - perhaps influenced by popular TV dramas).
  • The right of a patient with capacity to refuse a decision considered to be in their best interests. (This can form part of an advance directive.)
  • The difficulties faced by staff who do not know about the condition of a patient who has a cardiopulmonary arrest and who therefore feel obliged to institute CPR, even for patients who were dying, and for whom it is futile.

While performing CPR is of course worthwhile when it has a reasonable chance of success in the short term, and the patient has a reasonable chance of recovery, there have been concerns that it has been used where patients have no chance of recovery. There have been cases of patients who are receiving terminal care, and for whom CPR is instituted when their heart stops - which means they suffer what many consider a violent, undignified and distressing death, instead of a peaceful one. Indeed, it is perhaps a little surprising that no healthcare worker has ever (to my knowledge) been sued for assault after providing DNAR when it was futile and inappropriate. (It is only slightly surprising; in general the courts are far more lenient towards those who do something with good intentions, however inappropriate, than they are to those who are alleged to have not done something that somebody considers might have been appropriate.)

Nevertheless, many organisations will insist that unless there is a DNAR notice in a patient's notes, all non-medical staff, and any doctors who do not know the patient's condition, are obliged to institute CPR if their heart stops, even for patients in whom this is clearly futile. This places pressure on all involved to ensure that a DNAR notice is placed in the notes of such patients.

Issuing a DNAR notice Issuing a DNAR notice may, in itself, be distressing, however. Following the legal ruling I mentioned above it may seem necessary to discuss every DNAR decision with patients and/or their relatives. 

In fact, however, the full judgement is far more nuanced than it may have appeared from the press coverage). If it is considered that discussing a DNAR decision with the patient and/or their relatives would in itself be harmful (e.g. through causing undue distress), then a DNAR decision may be made without any such discusion. The decision-making process and the factors considered must, however, be carefully documented in the patient's notes to avoid the possibility of a successful legal claim by distressed relatives.

There is no legal obligation to discuss anything with relatives; but discussing a DNAR decision with them in advance may mean that they are less distressed at the time of death, and less likely to have unrealistic expectations. Indeed, the fact that relatives are sometimes upset when CPR is not performed may indicate that healthcare workers are not always as good as they could be at communicating to relatives how close to death a dying patients is (although it may also be much more complicated than that).

[This post is a re-working of text I originally wrote for the medical wiki ganfyd.]

Thursday, May 29, 2014

Big Tobacco's Trojan Horse

I'm writing this blog on 29 May 2014 (though I may edit it subsequently). I mention this because this morning BBC Radio 4's "flagship news and current affairs programme", "Today", interviewed representatives of the tobacco industry about e-cigarettes; and this evening there's to be a BBC TV programme on the topic of smoking.

I have blogged before on the topic of e-cigarettes; "vaping" as some call it. My recent blog Using sex to sell vaping - should this be allowed? has links to many of the academic papers on the subject (and I'm continuing - somewhat sporadically - to update this list).

To recap:

  • Vaping is almost certainly orders of magnitude safer than smoking for individual smokers. 
  • If a smoker uses e-cigarettes instead of tobacco, for each cigarette they would have smoked, that's a benefit.
  • The jury is still out as to whether vaping actually helps smokers quit. 
  • It remains possible that vaping will act as a "safe", "gateway product", enticing young people to become addicted to nicotine.
  • It remains possible that vaping will allow nicotine addicts to maintain their addiction when they are not permitted to smoke. This will reduce their incentive to give up altogether. If they have less incentive to tackle their addiction, they may continue to smoke, and smoke more cigarettes, by using vaping to "fill the gaps" when they can't smoke.

If youngsters take up vaping and become addicted to nicotine, they will continue to feed their addiction. Since tobacco companies are now producing (and marketing) e-cigarettes, they'll benefit from this. But they were also keen, on this morning's Today programme to emphasise that ordinary cigarettes are a "legal" and "legitimate" product which they will continue to market as vigorously as they can get away with. If people who've become addicted to tobacco through vaping switch to smoking, well, that won't be their fault will it? Or so they'll claim.

Big Tobacco is trying to position itself as the smoker's saviour, helping smokers to quit their harmful habit.

Big Tobacco, on this morning's Today programme, were very keen to tell us that they now accept the harms caused by tobacco - the very harms they spent decades denying, and uncountable dollars covering up. Of course they were! They want us to believe that it legitimises their efforts to sell another form of tobacco addiction. By claiming that e-cigarettes are the answer to the harms cause by tobacco they want us to be suckered in to allowing them to promote vaping as vigorously as they can.

But we have already seen the way that Big Tobacco markets vaping; and it's largely not as a product to help smokers quit. Instead there are glamorous and sexy advertisements,some using celebrities, and located where their exposure to school children will be maximised. This sort of marketing is clearly designed to appeal to young people who don't already smoke.

Treat all Big Tobacco claims with extreme caution.

The perfidious history of Big Tobacco is such that all claims that support e-cigarettes should be treated with great caution.

Big Tobacco will, for example be very keen to identify and publicise research that supports the value of e-cigarettes in quitting - indeed, on past behaviour it will set up marketing exercises disguised as research that purports to be proper research.

Any research studies that find any value of e-cigarettes - e.g. in smoking cessation - will be gleefully given maximum publicity by Big Tobacco's well-funded and expert marketing experts. Any research studies that suggest that e-cigarettes are anything other than valuable - e.g. by calling into question their efficacy as a smoking cessation aid, questioning their safety, or demonstrating that e-cigarettes act as a gateway product - will be ignored, rubbished, marketed dishonestly (taking a few sentences out of context to suggest they say something that Big Tobacco would have us believe), or dismissed by Big Tobacco.

It is quite right that we are very cautious about deregulating the marketing of e-cigarettes: Big Tobacco wants to use them as its Trojan Horse for selling nicotine addiction.

Tuesday, March 25, 2014

The joy of (giving) books

One of the joys of my life, since childhood has been reading. Having been read to as a small child - I have pleasant memories of this still - I may have had a head start in school. I was blessed with an ability to recognise words immediately, so interpreting the text was never a chore, and I became one of those children who always had their nose in a book. This may have been partly because I was bored at school and, until my middle ear problems were sorted out, a bit deaf; but I got genuine pleasure from reading. I was only about 7 when my parents started having to tell me to stop reading, turn out the light, and go to sleep. (Swallow and Amazons!)

As I got older and went to secondary school my self imposed sleep deprivation continued, and my long commute provided further opportunities to read. I discovered not only the school library, but also the school bookshop, and its stock of cheap paperbacks.

I can't claim that all of my reading was of great literary merit. I read great books, "unsuitable" books (Freud at 14?), and pot boilers. Ian Fleming, Alexander McLean, Desmond Bagley, Robert A Heinlein, Frank Herbert, Laurie Lee, John Wyndham ... These were among my companions. I generally enjoyed the set books we had to read - Dickens, Harper Lee, Shakespeare... School set books introduced me to books I might never, otherwise have enjoyed; as did books given or loaned to me by friends or relatives. The teenage me would never have read Mansfield Park if my godmother hadn't given me a copy: it surprised me, and I thoroughly enjoyed it.

The giving and receiving of books was routine; birthdays and Christmases invariably included a few.

My friends and family were mostly readers, and one of the pleasures associated with reading was talking about the books we'd enjoyed. I'd learn, from these conversations something about the sort of books somebody else enjoyed. More than that, however, I might form an idea about a book that they wouldn't have thought about reading.

So, a joy related to the joy of reading became the joy of giving somebody else a book they hadn't thought of reading, and which they enjoyed.

That's why Amazon's persistent refusal to allow Europeans to give each other Kindle books is so annoying; and it's part of the reason why the Home Secretary's grandstanding gesture forbidding prisoners' friends and relatives to give them books seems so cruel, vindictive, and pointless.

Monday, March 24, 2014

Lentils soup/stew

I've just enjoyed one of my favourite store-cupboard meals. It's too good a meal to keep just for emergencies but, like emergency risotto the basic ingredients keep well, and may well be in your cupboard already.

You start with some onion, chopped. One or two, it's not critical. And some garlic - about one clove for every onion  used, but it's up to you. Soften slowly in oil, so they don't burn.

I find some potato improves the taste and texture. I dice it quite small - about 5mm dice. Toss this in. Add some chilli, and other vegetables - whatever you've got on the floor of the fridge; carrots (don't cut them too small) are particularly good, courgettes not far off.

A bit of stock powder - I usually use swiss vegetable bouillon; but it's not critical.

If you've got it, and you're not vegetarian, some chorizo sausage - chopped up (a bit bigger than the potato - approximately 1cm dice will do) adds a lot to the dish.

Then add lentils - I used the green Puy lentils today - they work best in my opinion. Unlike the yellow, or orange lentils, which tend to turn to a flavoursome mush, they don't lose their shape and texture completely.

Then add plenty of water - about twice the volume of the ingredients so far. The lentils will absorb a lot of water.

Then simmer on a low heat, for about half an hour, until the lentils are soft and cooked through. Keep an eye on it to make sure it remains moist - you want a thick soup like texture.

That's it! Ladle into a bowl and enjoy on its own, with a nice glass of wine, some bread, and a companion.

Cheap, fairly quick, delicious, and nutritious.

Monday, February 17, 2014

Something must be done!

I just read an article about Syria, by Stephen Hawking.

"As a father", he writes, "I watch the suffering of Syria's children and say: no more".

"Where", he goes on, "is our emotional intelligence, our sense of collective justice?"
The problem with relying on "emotional intelligence" is that it often says to us "something must be done!". Which is fine. If there's something useful to do.

But often - and in this case - it's not at all clear what can be done, which won't make things worse. The risk is that we'll decide that something must be done, and then somebody will make a suggestion. "This is something!", we'll all cry, "So this is what we must do!".

But the chances are that whatever the action is, it will make matters worse and more intractable.

That's why we need to be very wary of responding to our "emotional intelligence". It isn't cold and unfeeling to not rush into doing something for fear of making matters worse.

I'm don't think that Hawking is suggesting a rush to military action - indeed, it's not at all clear what it is that he thinks should be done. 

Let's not make the mistake of thinking that just because a situation is intolerable, we have to do something to change it - not unless we can be very sure that what we plan to do will have the desired effect, without too many unintended and unwanted consequences.