Vasculitis UK

Simple guide to Data Sharing. This is a reasonable well balanced view regarding data sharing

The link below was tweeted this morning by a couple of GP's. The comments and links below the article make interesting reading too. So please do read it.

John Mills chairman of Vasculitis UK is very much in favour of data sharing especially for patients with rare diseases, because the only advances made in medicine are by use of data, this applies for all rare diseases, where data is hard to come by. Medical research establishments do not develop new drugs, but pharmaceutical companies do. But the pharmaceuticals companies use the results of medical research to develop new drugs, but before these drugs can be licensed for general use they have to be trialled for effectiveness and safety. This requires data from a large enough group of patients for it to be convincing to produce sound evidence. Data = Evidence. Much data about side effects of drugs can be gleaned from GP records. Even a lot of information from hospital records is not currently collected together, so for example we don't actually know how many people each year, are diagnosed with Vasculitis or how many are diagnosed with each type of Vasculitis. eg:- There are 320 recorded cases of Takayasu's Arteritis, but this number is believed to be much higher, as hospitals do not share data. We don't know for sure which treatments work best in the long run because clinical trials only cover 2/3 years. We don't know the long term side effects of many treatments, but this information can be found by looking at long term patient records, both hospital and GP records.

Recent advances in effective treatment in Cancer have happened through extensive use of joined up data.

In SE Asia, many people believe that ground up Rhino horn can cure everything from Cancer to a simple hangover, the only evidence is from what people say, some reliable data would soon demonstrate that this miracle cure has no validity and may just save the Rhino from extinction. John is willing to discuss this further with anyone.. So if you would like to contact him by phone or email please do, or send a private message.

Best wishes


6 Replies

I also have no problem with the concept of data sharing per se. However - I do NOT want my data shared with the wrong people and as it is at present that is a risk.

The shared GP records are of only limited us for long term information - there is no standardisation of the use of medications and using the yellow card system properly would be better than GP records or looking at the pharmaceutical companies trial "results" for side effects. Drugs are trialed in totally unreal situations - not in real life multimorbid patients (they are excluded usually) and the drug companies share only what suits them: the positive results. Negative and even neutral results are ignored - which skews the final result. That is slowly becoming very obvious as one after another "miracle" drug turns out to have feet of clay.

As for rhino horn - you can have all the evidence in the world but it won't change a culture of hundreds or years


Of course it is essential that all the checks & safeguards are in place & rigorously enforced. But your subsequent arguments rather prove the value of using "Big Data". Yellow cards only report significant events, whereas it's the accumulation of minor side effects and drug interactions that make the big picture. It's the multimorbid patient data that will show up in this analysis of GP data. Clinical trials need "clean" data for acceptable evidence. GP data is dirty data which needs sophisticated algorithms to analyse it, just like the algorithms used by Google , Facebook - and HealthUnlocked too. Try doing a Google search on eg "Holidays in Canada" & you will suddenly find ads for holidays & Canada appearing on your screen. We use Google analytics to check on our website performance. They can almost tell you what each person accessing the site had for breakfast!!

The HU site is paid for by HU analysing the content of all the traffic and coming up with data that they can sell. Stuff that's irrelevant & trivial in isolation, but taken together it makes a picture. It's depersonalised of course, but it's useful saleable information - for the right audience. I could give examples but time doesn't permit.

If you want a good read, with a medical flavour, that illustrates the benefit of the use of apparently "dirty" data, long before computers, in the time of Charles Babbage, then read "The Ghost Maps" - about Dr John Snow's search for the source & cause of cholera epidemics. He was the father of epidemiology & epidemiology depends entirely on data analysis.

Enjoyable discussion!! John


I've worked in the medical field all my life so do know a fair amount about epidemiology even though it wasn't my own personal field. That is why I say I have nothing against it per se.

What worries me - and a lot of other people with a medical background - is that given the abilities of the internet bunnies in the NHS there are at present too many loopholes. It may not be adequately anonymised - and clever people will be able to get information out of it if it is sold on without very tight controls.

Yellow cards can be used to report most adverse events, not just severe ones - but almost noone uses them. And frankly - I seriously doubt that GPs note our reports of side effects. They certainly didn't in my personal case. A GP who doesn't read enough to know that, for example, quinolones and pred (above all medrol) should never be prescribed together or even consecutively and does just that leading to serious achilles tendon problems, is unlikely to note a patient's responses to medication. Especially when, if you are on pred, their response to any query about something going on is "It'll be the pred..." I and a few others have that t-shirt - and it has made us very ill.


I had a stock of yellow cards & I think I only ever sent one off in 40 years in practice. They tedious & time-consuming. They were part of a system set up in the early 70s, before computers came into day-day use. There are so many adverse effects and interactions, not all recognised. I guess I'm committed as I sit in on meetings discussing database protocols and Vasculitis UK funds the UK & Ireland Vasculitis database. I have no doubts about the benefits of collecting good data, especially for rare diseases.

BW John


Absolutely John - collecting good data is essential and I'm not disputing that at all. I just have reservations about anything that is being touted as "safe" at present by certain authorities. And the NHS IT mess is one of them.

But since my hospital medical notes no doubt have an entry written by an AMAU consultant of a particular religious background claiming I am a "withdrawing alcoholic" when I had a TGA after having had a glass of wine the previous evening - totally unfounded as he was told by colleagues - maybe I have no great desire to have my records offered to anyone!

So we'll probably have to agree to differ :-)


I work on my local PPG (Patient Participation Group) and have asked about data sharing both at local level and

at Clinical Commissioning Group meetings. I have been assured that it is unlikely that other groups would have access to our data. Like you I have no issue sharing my information for medical reasons but would not want it sold on for spurious ethical reasons. I have been sent this link from NHS England, which is a response to this issue. It may hopefully, go some way to answering some of the questions.

Best wishes



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