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bitbigt

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About bitbigt

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    Millennium man

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  1. bitbigt

    A DNA database in the NHS?

    Separate to 'care.data' and 'summary care record' the government has a program called 'Clinical Patient Research Datalink' (CPRD). This evolved out of a previous project called GPRD. It involves routinely collecting and centralising private data on all patients in several hundred GP clinics. The only 'consultation' or 'consent' aspects of this on a patient basis involve a poster about it in the waiting room. Clinics are instructed to 'strongly' argue that this is a good thing if a patient asks any questions, and only if a patient absolutely insists on not having their data forwarded to the central system should they allow the patient to opt out. The gathered data are used for various research activities, and related charged for services.
  2. bitbigt

    A DNA database in the NHS?

    And if you have any linngering hope that care.data (which WILL be launched this autumn) will protect and share your private health data responsibly, read this... "The medical records of almost 50 million NHS hospital patients have been sold for insurance purposes" hxxp://news.uk.msn.com/nhs-records-sold-to-insurers
  3. bitbigt

    A DNA database in the NHS?

    Care.data is in chaos: hxxp://www.theguardian.com/commentisfree/2014/feb/28/care-data-is-in-chaos
  4. A source with inside knowledge about this told me outright some time ago... "there will be an opt out mechanism, but it will be made almost impossible to use" Basically, they want (need) to sell all these NHS data to reduce the spending deficit, now that the tax income from the City has largely dried up. But if lots of people opt out then the data will be very incomplete and so worth far, far less to any potential buyer. So one could conclude they are doing what is necessary for the good of the country. Though you might instead argue they just want to get the debt down, to get themselves re-elected. I think its a bit of both. But in either case, they are trampling over people rights in the process. The crazy thing is - this WILL come back to bite them, eventually. The database will be hacked or abused or leaked (its too attractive a target to not be), and then there will be a massive scandal about the whole thing. There are far better ways to achieve the same benefits without the massive risks and abuse of people. But that requires being smart and moving slower with a more involved solution, rather than just being ruthless and bulldozing ahead as they are doing. Basically, its simply a politically driven project, without guidance from IT experts who could design it better. The technology and approach being employed are straight from the stone age. I.e., push everything from source to central database regularly. Its the technical equivalent of putting all the army's weapons and explosives in one shed, with a chain on the door, and distributing it from there. You just know how that will end.
  5. bitbigt

    Bank runs

    You see Russia - this is what happens when you go up against the fair and respectful EU.
  6. callmejoe - thats interesting. Not least because if ever your data get put in the system (e.g., upon moving surgery) then they can never be removed. Remember, any new or altered data are uploaded automatically and regularly from each surgery. Therefore, if your records arrive at (or you start a new record at) a new surgery they may be uploaded before the new surgery can prevent it. Also, be sure your daughter opts out before September
  7. The media handling of this is so distorted - playing right into the hands of the government... * They title their piece "Giant NHS database rollout delayed", which misleadingly implies it is ONE database and it is for the NHS. In fact it is TWO databases. One is an NHS database for info related to emergency healthcare for patients ('Summary Care Record'). The other is government quango database ('Care.Data' - nothing to do with the NHS) that will take all your personal data and sell it to anyone who can claim they'll use it for some greater good (not excluding insurance companies, pharma doing animal research, etc). * The controvertial second one is the one being 'delayed' (not stopped), and it is nothing to do with healthcare! * The leaflets they sent out were about Summary Care Record, not Care.Data * They are not explaining how to opt out, or making it easy. Also, if you do not opt out by September, you will never be able to thereafter
  8. and more... hxxp://www.telegraph.co.uk/health/healthnews/10644864/NHS-crisis-talks-over-introduction-of-patients-records-database.html hxxp://www.computing.co.uk/ctg/feature/2326227/privacy-under-the-knife [change xx for tt in longer links above] I hope this whole care.data plan is now coming apart at the seams, and will be scrapped
  9. I have delved further into this, and the situation is as follows: TWO initiatives are now underway to harvest identifiable health and personal data from your GP, to share and sell it with others without your consent. 1) Summary Care Record (SCR) This is a national centralised database of medical information (allergies and medication, initially) extracted and uploaded from patients' GP records. The project claims to make this information potentially available to emergency doctors (in A&E and GP out-of-hours centres countrywide), but working with these guys I can assure you they will not use it or trust it. In short, you are unlikely to benefit by being in this system, and yet your identifiable data will be on yet another database to be hacked, mined, stolen, abused, etc Information leaflets have been issued to many houses offerring opt-out, or you can write directly to your GP to opt-out. Further info and help on drafting a letter can be found at hxxp://www.thebigoptout.com/opt-out-letter/ 2) Care.Data This scheme is FAR MORE INSIDEOUS, and the governent has done NOTHING to alert the public to it, even though it goes live this March and will be confused by many with the SCR. It is being managed by the "Health and Social Care Information Centre" (HSCIC) (http://www.hscic.gov.uk/). This is a GOVERNMENT body, but it uses the NHS logo to look like part of the healthcare system. Regarding your data in the Care.Data ystem: • The information uploaded to care.data will not be made available to health professionals providing your treatment, instead it will be given and SOLD to universities, drug companies, insurance companies, etc [price list here:hxxp://www.hscic.gov.uk/media/12443/data-linkage-service-charges-2013-2014-updated/pdf/dles_service_charges__2013_14_V10_050913.pdf] • The information extracted for care.data far exceeds just allergies and medication • care.data does not concern clinical care, it is an administrative and research database • Patients will not be written to individually about care.data, although a national leaflet drop is underway • The project will go ahead everywhere shortly, with data extractions planned for "Spring 2014", after which you can NEVER get your data removed from the system More information about this, and ways to opt out, are provided at an excellent website (http://brief.care-data.info/) provided by Dr Neil Bhatia, GP and Caldicott Guardian for the Oaklands Practice in Yateley (Neil.Bhatia@nhs.net). In short, you need to draft a letter (templates available) and take it to your GP immediately, or just use this hxxps://dl.dropboxusercontent.com/u/14156524/caredata_trifold.pdf [change xx for tt in longer links above]
  10. bitbigt

    A DNA database in the NHS?

    A simpler version of my last post... hxxps://dl.dropboxusercontent.com/u/14156524/caredata_trifold.pdf [change xx for tt]
  11. bitbigt

    A DNA database in the NHS?

    I have delved further into this, and the situation is as follows: TWO initiatives are now underway to harvest identifiable health and personal data from your GP, to share and sell it with others without your consent. 1) Summary Care Record (SCR) This is a national centralised database of medical information (allergies and medication, initially) extracted and uploaded from patients' GP records. The project claims to make this information potentially available to emergency doctors (in A&E and GP out-of-hours centres countrywide), but working with these guys I can assure you they will not use it or trust it. In short, you are unlikely to benefit by being in this system, and yet your identifiable data will be on yet another database to be hacked, mined, stolen, abused, etc Information leaflets have been issued to many houses offerring opt-out, or you can write directly to your GP to opt-out. Further info and help on drafting a letter can be found at http://www.thebigoptout.com/opt-out-letter/ 2) Care.Data This scheme is FAR MORE INSIDEOUS, and the governent has done NOTHING to alert the public to it, even though it goes live this March and will be confused by many with the SCR. It is being managed by the "Health and Social Care Information Centre" (HSCIC) (http://www.hscic.gov.uk/). This is a GOVERNMENT body, but it uses the NHS logo to look like part of the healthcare system. Regarding your data in the Care.Data ystem: • The information uploaded to care.data will not be made available to health professionals providing your treatment, instead it will be given and SOLD to universities, drug companies, insurance companies, etc [price list here:http://www.hscic.gov.uk/media/12443/data-linkage-service-charges-2013-2014-updated/pdf/dles_service_charges__2013_14_V10_050913.pdf] • The information extracted for care.data far exceeds just allergies and medication • care.data does not concern clinical care, it is an administrative and research database • Patients will not be written to individually about care.data, although a national leaflet drop is underway • The project will go ahead everywhere shortly, with data extractions planned for "Spring 2014", after which you can NEVER get your data removed from the system More information about this, and ways to opt out, are provided at an excellent website (http://brief.care-data.info/) provided by Dr Neil Bhatia, GP and Caldicott Guardian for the Oaklands Practice in Yateley (Neil.Bhatia@nhs.net). In short, you need to draft a letter (templates available) and take it to your GP immediately.
  12. bitbigt

    A DNA database in the NHS?

    I can't remember the exact deadline for returning the form - but seem to recall it was a month or so after I received it in December. They sent one for me and one for my wife, but none for the kids - so I had to go to the GP and get extra copies. Therefore, they will have spare forms at the GP clinic, and you may still be in time assuming your deadline was the same as mine. But since you did not yet get a form they may not have issued them yet in your area, in which case you'll be fine. At the very least you can insist on being given an opt out form, as nothing came by post to your house. As a side note - the people at my GP clinic had no idea what it was all about, and were just following instructions from the government, with some vague idea that it was all part of improving healthcare provision.
  13. bitbigt

    A DNA database in the NHS?

    Working in this field, I can confirm that the general thrust of this story is correct. But the doability and affordability of all this genome sequencing, in the next decade at least, are major obstacles. Also, the motivation behind it is primarily financial. All health data are to be collected and access sold to industry (e.g., pharma industry) - as the ability to collect all NHS data is one of the few advantages we have in the UK, providing a national income stream alongside the shrinking financial city of London. It will also be argued that the motivation is about improving and personalisng heathcare. But this is only realistic for simple genetic disease/traits where single mutation cause the disorder. For common complex disease we simply cannot interpet the genome sequence well enough to give al=ny clinical utility, and it is unclear whether we will ever be able to. Please note: the opt-out option letters sent to all UK homes in recent months, saying your GP health data would be handed to a central system (to offer you better/full and emergency care wherever you go) deliberately did not mention that the data were to be sold to private companies. Of course, had they made that clear, many others would have opted out.
  14. I believe what they are doing is well intention. But it shows how little respect they have for our privacy and our rights. The police do not regard the Public as their masters, but as their subordinates. Uniforms corrupt!
  15. Police have decided it is in your best interest that they 'break in' (enter without permission) to your home: http://www.bbc.co.uk/news/uk-24842680# Without any consideration of the fact this is illegal: http://www.adviceguide.org.uk/engla.../law_police_e/police_powers.htm#Powersofentry
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