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.