Personal Health Records
Not widely publicised, but plans are afoot to sell off personal health records held at GP surgeries. There’s a very short time period in which individuals can opt out of this if they so choose, retaining the right to who has access to very personal information.
This is a link to Guardian explaining situation, there are lots of other links about what is happening, so feel free to Google elsewhere. I will post a link to the opt out website, it’s easy to choose, all you need is name, date of birth and your NHS number.
https://www.theguardian.com/commentisfree/2021/jun/03/gp-nhs-digital-data-patients-records-england
Here’s is link on how to opt out. With the above information, it takes seconds to do.
https://medconfidential.org/how-to-opt-out/
Comments
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Thanks for that, TtDA - I had just (but only just!) become aware of this. Given this government's record when it comes to getting into bed with private companies taking on NHS roles (I note one such intervention has just been declared illegal) it's good to have the opportunity to opt out. I will do a little bit of research (one of Mrs M's singing friends is a local GP) before deciding. I think the deadline has been pushed back to September - is that correct?
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Apologies ET, I had to edit, links should be there now.
M, it’s not widely known. I deliberately didn’t post my thoughts, as more concerned about getting the information out to anyone who shares wanting to retain some control over their personal information. We are in process of letting friends and family know. Any kind of debate, thoughts will only get thread closed, but it’s will be more important for some folks to opt out than debate😁 I’m sure you know my thoughts on anything like this👍
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Not sure about Wales, Scotland, NI. But if anyone finds its different, or a different opt out link, please feel free to add those links.
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Thanks, TDA.
We did opt out of something like this a few years ago but I'm not sure if it's the same thing. I'll investigate.👍
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Thanks for the info TDA, I did hear about this on Morning Live the other day, even Doctor Xander is opting out.
I'll give it some thought first but at the moment I'm edging towards the opt out.
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What are the consequences of not opting out, does anyone know?🤷🏻♂️
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or are there any benefits (to us) for staying in?
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I haven’t checked the pros and cons yet R2B but Dr Xander was worried that his data would not be as safe when it could be passed on to third parties who were more interested in making money than data security. Just his view.
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Yeah. . .wot C said too😊. Joking aside, I volunteer for most things medical(sub Frankenstein tests) liver, heart, joints, new drugs & with each of them I sign my anonymity away to ensure my data can be accessed worldwide by medical professionals-I’ve not been bothered at all by any sales or never been refused insurance. That’s why I ask👍🏻
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Apparently, it’s quite easy to de anonymise it, and that’s one of the major issues.
Like I suspect many others, we are organ donors (from before you had to opt out), we give our consent to certain research agencies for access to information to assist in research. The difference for me though is that everything has been my choice, and as I read the small print, and understand what’s involved, I am relatively happy that it is still my choice.
Not opting out of this means that your records are then in the hands of others, who may do with it whatever they wish or deem necessary, without you even knowing. So some very sensitive information around things like addictions, mental health, sexual performance, fertility, along with medical conditions such as heart disease, cancer, dementia etc.... are there possibly to be exploited. I am under no illusions that this is being done for monetary gain, nor that any promised anonymity will be compromised, and have the opt out clause available up ti I think the 23rd June.
Others will have a differing view, won’t be bothered about their personal details, and I respect this choice. This is the second time this has been attempted, it was rescinded in 2013, but the fact that there has been little in the way of letting the population know what is about to happen speaks volumes to me.Its up to the individual, I merely raised it because it’s not generally known what is about to take place. At least those interested can do their own research now, make their own minds up.
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The Guardian link outlines the issues around anonymity AD.
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Thanks for the heads up, ttda - but this isn't new. I seem to remember quite a lot of publicity about it a few years ago, including direct contact from our GP surgery about it. Although we opted in at the time - and I am inclined towards Rocky's viewpoint - I have changed that preference for us both for the time being, so that we can see how the debate develops - as I'm sure it will. Can always change it back, later.
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No it’s not new. 2013 last time it was attempted. 🙂
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Sometimes you just have to respond😂
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I am not sure about opting out of this, still undecided. I doubt my medical records will be of interest to anybody anyway! I have read that they did use some of this data already to plan the pandemic and attendant issues. They need anonymous data to decide and see what drugs work and which aren’t so helpful, so as long as what they say is correct, and it stays anonymous, it may help scientists. BUT it’s still a trust issue, hence our indecisiveness.
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Somewhere in your medical record will be your Frailty Index Score. Everyone has been given one whether you know about it or even agreed to it. That information in the wrong hands could be very damaging from a personal point of view and up to a national basis.
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My take on this is that there is an absolute need for NHS data to be centralised. I am not sure how many of you have been in the unfortunate situation of having to visit a hospital away from your local NHS area you will be aware they have no access to your medical records which can be a problem in the treatment you get. Even local to us Bedford Hospital has no access to Milton Keynes record which leads to delays and duplications which is hardly cost effective.
So for these reasons I think a centralised system trumps most of the concerns about the extra use of the data. We also have to look at the positive possibilities to the use of the information for research.
David
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I am rather shocked to be honest by the amount of trust folks are happy to express in what is happening, but, that’s only my take on things.
There’s huge amounts of money to be made from creaming off sensitive information, and selling it to bidders. Not to mention how inept at times the powers that be are with such data. And why almost bury what is happening during a pandemic situation, smells not quite right to me☹️
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TDA, from what I’ve read from NHS England the Data is not for profit ie selling it to the highest bidder, it’s to help everyone. I view it like getting vaccinated-we do it for ourselves & others. I’m not a believer in either QAnon nor the big brother theories, i’m a heretic a free thinker I’m more upset by the amount of lack of trust tbh, we have a gem of a health service I’ll not turn my back on it now-they’ve done too much for me thus far.
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