Personal Health Records
Comments
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I am a huge fan of our NHS Rocky, but the NHS isn’t the problem here, the information has been demanded by the Government, from GP’s. In many instances it’s the GP’s who are pressing the alarm buttons. I wouldn’t trust this Government with much at all to be honest. And that shouldn’t be read as trusting any other party to be as honest either. I am just glad that there is an opt out, at least until the picture becomes less opaque. 🙂
Here’s the latest update, indicates how concerned some sectors of the Health Service are, as well as some elected Members. I don’t think any of them don’t support the need and use of data for research, it just how and why it is being done at such speed. Guardian again, but there are other outlets for those who prefer it.
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I don't think it is about trust but more about common sense. The article in the Guardian, as much as I love the newspaper, I thought was very one sided and dealt only with the possible negatives. This surprised me as it was a doctor who wrote the article. You are just concentrating on the possibility that the data will be sold to commercial companies. I am not sure that in its raw state it would be much use. On the other hand it would help with serious university research into trends helping to shape how the NHS moves forward. Plus, what I have already mentioned about making NHS records available right across the NHS which has surely got to be a benefit to us as individuals. Heaven forbid someone finds themselves in a strange hospital and receives the wrong treatment for the lack of information being available to that hospital and the patient not being in a position to advise!
David
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Sorry but I think vast amounts can be learned from health data, research needs you! Especially in the midst of a pandemic when information can be vital. Here's a LINK to the NHS Digital site, you can indeed opt out and some require your consent.
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I was diagnosed with a rare incurable disease of the kidneys quite some time ago and at that time the Renal Specialist told me that in view of its rarity it was not considered a "sexy" disease and as such there was insufficient data available for these Specialists to fully understand why it happened, what treatments, if any, could be effective or whether there was any hope of finding a cure.
The same situation still exists some 26 years later. They did say that there was nothing much to worry about as it was a slow moving disease and most people with it died of something else and anyway it would take 20 years before killing me. I don't think their bedside manner was that wonderful as I was only 40 at the time.
Anyway, I'm still here, despite something happening after a few years that reduced the time frame from 20 years to just 5 but the same blank page exists about why I'm still here.
I've offered to give them chapter and verse on how I live so that they can add it to the data but there is still no incentive to collect such data, as far as I am aware. I've stopped offering.
If by some small chance my own experiences can be added to other such "sufferers" (a term that should be used lightly) and something good can come of it down the line then I am fine with someone using my own data. It won't tell them how I live but will tell them the consequences of it. So I have no objections on a personal level but do understand other people who are reticent about "big brother".
Each to their own.
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Wherenext
I think the sort of data you are willing to provide is more likely to be welcomed by any charities that deal with the condition concerned?
After I had my hip replaced I was asked to do a survey, via the NHS, a couple of years afterwards. It surprised me that it was the one and only survey I was asked to complete. You would think that in order to build up information of such issues they would continue to ask every few years. Perhaps the early survey tells that what they want to hear and if you have problems after that you just get in the queue for another replacement!!! Hopefully science and knowledge on all things medical are improving all the time.
David
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Please don’t think I am against giving details for research, far from it given what my OH has gone through, and we can and do sign up and contribute to various research, including cancer and heart disease.
My main concern around this is that the Government have told GPS to hand over files, and it was not widely publicised, far from it. It has been the BMA and lots of GP’s that have sounded the alarm bells around this, wanting more time for the public to become aware. Opting out doesn’t stop the research, it just allows the individual to retain some control over their personal information.🙂1 -
DK, I was talking to one of the top Renal Specialists in the country shortly after my diagnosis. I had to pay for the privilege but I could afford it and more importantly wanted specific advice.
He told me that even back then they were trying to get a pan European data collection system going but individual countries had too many Private and Confidential hurdles to jump through. Can't see it being any better now can you?
I remember him telling me that he only found out through unofficial discussions how badly some steroid treatments affected Italian patients with the same illness so that was one avenue closed off.
I can see how better equipped and prepared any Health Service would be with a joined up data collection but it didn't make sense to fragment the NHS all of those years ago and continue to do so as surely this makes things harder to collate and come to more reasoned conclusions across the whole UK.
Charities are interested but their main input tends to be spread too widely and is still small compared to what a Nationwide Government one can achieve. I'm not convinced charities are the best riute for data collection.
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