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IMPORTANT PLEASE READ This website and forum has been living on borrowed web server time for years. At the end of this month silsden.net in it's present form will cease to exist, BUT there is a new silsden.net in the making, and a new forum, and lots of exciting new things coming to this space. Peter |
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Topic : Sharing of Medical records |
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| Snowdrop |
www.silsdengrouppractice.co.uk/info.aspx?p=18 This information is on display in the Health Centre. Not everyone may be aware. The link should give you important information about your care records. |
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| steetonblue |
All that is true and should be taken in to account before you opt out BUT the sharing of data is vital in an ACUTE setting, for example if you have a heart attack and are unconscious, A&E and cardiologists will have fast and accurate information about you (it may surprise you that what people hear the GP tell them is often miles from the truth) - it can save duplicating of vital tests and speed up life saving treatment. By all means opt out but then don't sit in hospital and moan about why it is taking you so long to get treated. I would encourage people to sign up but before you do, just highlight your concerns about the system if you have them (personally, I couldn't give a monkey's and would rather hospitals, district nurses etc had access to my records) |
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| Snowdrop |
www.care-data.info/ If you follow the links on the Solsden Practice website you can see that opting out does not impact on health professionals accessing accessing your medical information for continuity of care. If you do not opt out your personal information can be easily identified and sold to other agencies. |
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| Snowdrop |
It is nothing to do with GPs sharing records with hospitals. Records are already shared within the NHS. This is not about opting out of sharing within the NHS. It's about records been uploaded to a national register that can be sold on to private companies. |
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| Snowdrop |
www.theguardian.com/society/2014/jan/19/nhs-patient-data-available-companies-buy |
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| dexter |
Here is a comment from NHS Tim Kelsey, NHS England's national director for patients and information, said patients need not have concerns as the information would not be "identifiable". "This data is stripped of all the identifiers so, for example, the name and address features nowhere on this data; postcode, numbers, the data is stripped of all the identifiers and in their place are substituted meaningless pseudonyms in order that this data can be linked with other data sets. "Can I be categorical? No one who uses this data will know who you are." I'm not saying this has all been fully explained in detail before, but it would appear that the information is required to enable firms to have a body of information to research future medical solutions to help us all. |
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| Snowdrop |
Please refer to the information in Silsden Health Centre. |
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| dexter |
I've carefully read all the information provided in this thread and elsewhere, and we all have a personal choice to make. My own choice is that I cannot see that me or my family are prejudiced in any way, or will suffer from this action. And if the data is handled correctly it could prove of benefit to some. Well qualified people should be appointed to make sure that this happens. |
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| Dodzi |
"You may be able to identify people if you had a lot of data. It depends on how people will use the data once they have it. But I think it is a small, theoretical risk," he said. From the Guardian. As stated before all the data will be sanitized so individual patients cannot be identified. This data is to be used for research to hopefully identify treatments and cures.... |
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| GAMEKEEPER |
04/02/2014 : 15:09:22 "Here is a comment from NHS Tim Kelsey, NHS England's national director for patients and information, said patients need not have concerns as the information would not be "identifiable". "This data is stripped of all the identifiers so, for example, the name and address features nowhere on this data; postcode, numbers, the data is stripped of all the identifiers and in their place are substituted meaningless pseudonyms in order that this data can be linked with other data sets. "Can I be categorical? No one who uses this data will know who you are." I'm not saying this has all been fully explained in detail before, but it would appear that the information is required to enable firms to have a body of information to research future medical solutions to help us all". Posted by Dexter. "care.data & the confidentiality of your medical records. *Please read* Care.Data Are you happy for your medical record to be uploaded or do you wish to opt out NOW? Please read all this important information about your electronic health record and the benefits as well as potential risks of your records being shared with others. You need to read this to decide whether you are happy with what the government has decided or whether you would like to opt out of the scheme. You can always opt in again at any point if needed. At no stage will the care you receive be worsened as a result of opting out. If you opt out, your personal information can still be used for your own care. Please note that this information is not relating to The Summary Care Record or “sharing” your GP record (systmone) with other organisations who provide you care (e.g. district nurses, hospice, specialist GPs, Airedale) You may have come across this leaflet which is being sent to all households in England entitled "Better information means better care". The government has started a publicity campaign to inform patients just like you about the benefits of providing better information to enable better care for people just like you. You can learn more about this service by clicking here. Here isguidanceprovided for GPs to explain more. Read Dr Geraint Lewis' blog explaining why in his opinion better information means better care given he is the Chief Data Officer of the NHS in England. Our concerns This all sounds very good, however there are some very significant concerns that we would like to bring to the attention of our patients. We are responsible for you and you trust us to support your care needs. Care.data is designed to upload your medical records and those of your family to a central database held at the health and social care information centre. This process is administered by ATOS. This information will then be used to plan provision of care across the country and “sold” to researchers (and other applicants for the data) for a nominal fee. We are obligated to allow this by law but if you decide to you can opt out for you and your children. Once the information is uploaded we at the practice & you have no control over the information held on you. The information uploaded is not anonymous it will contain you NHS number, your postcode, your date of birth and your gender and ethnicity. The medical information uploaded will include: your medical diagnoses (including cancer and mental health) and any complications, referrals to specialists, prescriptions, family history, vaccinations and screening tests, blood test results, body mass index (height/weight), your smoking/alcohol habits. Non-anonymised information about you may be passed to researchers and other applicants for data (with safeguards under the Health and Social Care Act and the Care Act). Why does this matter? There is a basic fundamental right that you have always had which is your right to privacy and confidentiality. We take this right very seriously. When you contact the surgery or come and see one of our clinicians, you see us in the knowledge that the information will only be used by clinicians and adminstrators involved in your care. It will not be made available for others to look at without your expressed consent. (There are some rare situations when your record can be shared with others without your permission. This is for some extreme situations such as if it is in your best interests and you are incapacitated or when it is considered for the public good). This is no longer the case and your data could be routinely taken without needing to get permission from you. We could not therefore guarantee your right to confidentiality. This could go to the very heart of the doctor - patient relationship. We therefore fear a significant lack of trust could result with far-reaching consequences for you and us. But why should this matter? What are the problems with the way care.data works? The data from your record will be collected without being made anonymous until later in the process. This means if the data was intercepted, it would be easy to see who it was about and what it referred to. Most experts in IT security do not think this is a sensible way to do things. It is not at all clear what the data will be used for or even who has access to the data. You should be asked for the data in your record and have some say on whether it is OK for others to use it and for what purpose. You should be able to see the audit trail for when your record has been accessed and ideally by whom. That seems like a reasonable request. What about patients who are less likely to access health services eg those with a disability, those for whom English is poor or those in residential / nursing homes who perhaps are vulnerable and who do not know what the risks are? It may be that the researchers mentioned in the leaflet may be able to buy your data. Does that matter to you? Many experts think that even if your name isn't on the data due to the range of illnesses you may have, you could still be identified because of the amount of personal data that is now available. This has far reaching implications for you and also any offspring you may have. This is no longer just about you. Improving care is more than just joining up bits of data or health records. This should be obvious. It's about having clinicians who care about you and listen carefully. Considering your needs and wants and involving you in shared decision making so that we work together towards a common solution is fundamentally important. It is a very bold statement to make simply that sharing information will lead to better care. Do you really think that is true ? The Information Commissioners Office has stated that it is the responsibility of every GP practice to ensure every patient knows their rights and has been informed of how they can be exercised, The leaflet doesn't give you any information on how you can opt out of this scheme. This is the only option you have if you are not happy with the way this scheme is being handled. GP practices currently are unable to opt all patients out. You will have to do this individually. Our responsibility is to ensure patients are aware of their choices including the ability to opt out. Care.Data is not about direct patient care. This means that you will continue to receive excellent care whether you choose to remain opted-in or you opt-out of the service. Care.data is about the use of your data by other parties that are not delivering care to you directly. It is not clear who these other parties are and why they would be interested in your data. So what options do you have? You could choose to do nothing in which case your health record will be copied and sent up to Care.Data. Or you could choose to opt-out now. You can always opt-in again should you decide it is safe to do so or your concerns have been met. Dr Neil Bhatia a GP in Hampshire has provided an informative website www .care-data.info for patients at his practice which provides a wealth of information with a great deal of detail explaining the consequences. If you want more information I would strongly recommend that you read this. See how your GP can help you control your personal and confidential information What do others say? A number of people have commented on the plans. Here is a selection of what has been said. medconfidential.org/whats-the-story/ (medconfidential an independent website about your medical information) NHS patient data to be made available for sale to drug and insurance companies (The Guardian) So what can you do if you have decided to opt out for now? Please do not phone the surgery unless you have difficulty filling in forms (our lines are busy). Please fill in the opt out form available at both Silsden or Steeton surgeries or by clicking on the link below. Opt out letter" With thanks to HTMC & medconfidential. Copied from www.silsdengrouppractice.co.uk/info.aspx?p=18. 05/02/14 0900. Some conflicting information here? Under the circumstances, I think that everyone should be aware of this and make an "informed" decision. Why does the GMC article state that NO personal data/identifiable data remain with the records, yet the Silsden Group Practice statesmen make it clear that identifiable data WILL remain with the data sets? Under the Data Protection Act 2000, you can have concerns about a persons mental health, health professionals cannot discuss ANY aspect of that persons medical history, even if they pose a serious risk to the public. This topic appears to say that it is alright to sell confidential records to the highest bidder. I am all for medical development, pioneering transplants, cancer treatments, mental health treatments, cardiovascular research etc. I thoroughly appreciate that this all takes infinite financial resources, but I also believe that a balance has to be struck. All research should be done using anonymous data sets. |
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| Snowdrop |
www.dailymail.co.uk/news/article-2552651/GPs-revolt-patient-records-Growing-anger-NHS-plan-harvest-private-data.html |
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| Snowdrop |
www.theguardian.com/society/2014/feb/06/police-backdoor-access-nhs-health-records |
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| window |
this post has been edited 1 time(s) To Snowdrop and Gamekeeper, Hooray! At last someone has researched and realises what is going on. The data collection is not just about research. All you need to do to opt out, is send a letter to your GP. See, medconfidential.org/how-to-opt-out or bigbrotherwatch.org.uk/home/2014/01/op-care-data.html I do not trust the UK government. If you hold the belief, " I have nothing to hide so I have nothing to fear," then please read the page at, chronicle.com/article/Why-Privacy-Matters-Even-if/127461/ |
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| ABACUS |
What GPs are obliged to do is inform their patients of the opportunity to opt out of these changes if they so wish; unfortunately patients are being subjected to a barrage of alarmist propaganda towards opting out in the form of a huge notice in the surgery, printed information on prescription sheets & texts to mobile phones. Patients need to question why the issue of opting out of these changes seems to be so important to the practice as I am not fully convinced it is due to patient record confidentiality, which seems to be the main thrust of their argument? For many years now patient record data stored in hospital computer systems has been uploaded on a monthly basis to a central database to allow analysis, evaluation & comparison in order to identify areas of concern and try to increase the standards of care delivered in hospitals. Not all, but the majority of this centralised data has been available to private/commercial organisations for some years and they perform a beneficial service by further analysing the data to identify both good and bad practice. If you want to see the sort of thing they can produce have a look at ‘Dr Fosters Intelligence’ web site and download the full report of ‘The Hospital Guide 2013’ drfosterintelligence.co.uk/ GPs must be aware of this existing collection and distribution of hospital patient data yet the practice has never raised any concerns with patients about record confidentiality in this instance – why not if the same issue is such a concern for them when it comes to monitoring their own systems? One reason may be that the new proposal allows for more information to be passed on to third parties but from what I have read I don’t see how this is a problem; the additional information seems to be the inclusion of date of birth, post code and NHS number; nothing the Dr says to you or writes down about you is uploaded, only coded data is sent to the central system indicating a particular disease, condition or procedure carried out. This won’t allow anyone to identify you personally; they could only locate a particular coded disease or procedure down to street level. If patient confidentiality is not unduly compromised by these changes, one can see why the more cynical amongst us might reach the conclusion that GPs are against this change in order to prevent them from being monitored in a similar way the hospitals already are. Why should hospital clinicians be monitored more rigorously than clinicians within GP practices and surely it would be better for the general public to have access to unbiased information with regard to practice performance. |
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| dexter |
ABACUS....I think you are very close to the truth here.....carefully and eloquently stated...well done! Be prepared for the GP's PR onslaught which will descend now........! Hospitals are being found out through examination of similar data, hundreds of people have died unnecessarily in a number of hospitals. We need to know the truth about how people are being treated. |
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| Snowdrop |
www.dailymail.co.uk/news/article-2560907/8-10-GPs-baffled-plan-harvest-patients-records-Findings-doctors-not-know-information-used.html |
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| Snowdrop |
www.telegraph.co.uk/health/nhs/10642740/NHS-admits-new-medical-records-database-could-pose-privacy-risk.html |
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| Dodzi |
Well the first \article is from a paper which is about as trustworthly as I don't know waht and the other article is just knee jerk reaction.....May be able to identify if re engineer with data from other sources....and the amount of work require to do that would be enormous. Its just a knee jerk reaction. This information will contain your medical history but none of your personal details..... |
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| Fred |
You may trust government not to lose data but I don't. Somewhere, at sometime, a government employee will push a button to create an anonymise database for research purposes, but is will contain data which can identify people. You may trust the government of today but you will have no comeback when the rules are changed in the future. A little food for thought in this article: www.pwc.co.uk/assets/pdf/cyber-security-2013-exec-summary.pdf |
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| Snowdrop |
It is personal choice of course. Analysing and critiquing all available evidence and comments I personally am not convinced that the data will Be ananymous. I have no objection to medical data been shared between hospitals to optimise informed quality care. Anyone selling information to other agencies poses a risk. Possible identity fraud, bias with Insurance Companies. My medical notes have gone missing between hospitals for weeks with no explanation where they have been and who has had access. Human error or greed always poses a risk. |
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| midway |
The start of a new NHS data-sharing scheme in England involving medical records is being delayed by six months. Work to start compiling the largely anonymised records on to the Care.data database was meant to start from April. But NHS England has now decided that will not now happen until the autumn. |
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| dexter |
The reason for the delay is that NHS have not explained the issue in proper detail to the public. This has allowed the media and GP PR to have a field day about it. The rationale for having the data is still important, and will make GP's as accountable as hospital staff are, and will allow important linked up research to be carried out for medical progress. Once the detail is properly explained, I think most people will go ahead and allow their data to be used, but some will opt out.....that's democracy. These days people need things explained to them to allow decisions to be made, hopefully some lessons have been learned. |
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| Snowdrop |
www.telegraph.co.uk/health/healthnews/10656893/Hospital-records-of-all-NHS-patients-sold-to-insurers.html |
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| jonno |
If the data were properly made anonymous before the GPs released it I would not mind. As it is now my family will all be opting out. There is no justification for having the GPs send the data in a way that makes it possible for individuals to be identified. I have no faith in any assurances that my data will not be sold or otherwise transmitted in some way to third parties who will use it for commercial purposes. If you believe the assurances that have been given you must not be aware of the many instances of data getting into the wrong hands that appear in the press with monotonous regularity. To anyone who says hospitals are doing this already, I know, it doesn't make it right though. This has simply not been thought through, if personally identifiying data were stripped out before the data left the GPs this would be a non-issue. Why are people, and by people I mean policy makers and project planners, the people at NHS England who have organised this debacle, so dense that they cannot see this and could not foresee the massive concerns people have with their ill conceived plans. |
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| Snowdrop |
The above link to The Telegraph in my previous post is Headed "Hospital records of all NHS patients sold for Insurance purposes days after controversial plans to extract patient data from GP files is put on hold." |
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| old_miner |
Usual non problem hyped up by ignorant morons. Seems it is only the data that is required. NOT any personal information. Data is required for statistical analysis, for example to which pill works the best. The larger the data set the more accurate the analysis and the more likely you are going to get the best treatment. Opting out is selfish, and totally meaningless. If this data is sold to medicine making companies then fine. If it helps saving people from something like the thalidomide then is a good thing. what dodgy use they can make of this data I cannot think. |
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| jonno |
There you go again Old Miner, you lack the imagination to understand what this data could be used for so you slag off everyone who does understand the issues as morons. Well I'm not educating you on this issue, go do some reading and come back and comment some more when you are more informed. |
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| Snowdrop |
www.theguardian.com/society/2014/feb/18/nhs-delays-sharing-medical-records-care-data It is not scaremongering by morons and I am not a moron, thank you. Access to personal information has already happened. Perhaps carefully reading while approaching given information with an intelligent question and critical analysis ? |
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| GAMEKEEPER |
www.thetelegraphandargus.co.uk/news/11033519.One_in_five_are_unable_to_get_to_see_a_GP_in_Bradford/?ref=var_0 This might be seen as going off topic, but the T&A link states that patients aren't able to book a doctors appointment when they need to. How was this information gained? What factors were taken into account to decide whether or not an appointment was needed within a specific time frame? I was asked to book an appointment by a doctor, I was late by a few minutes for that appointment, was asked to book another appointment as the doctor couldn't see me. A week later, I have not been able to book another appointment. I phoned up yesterday at 0755, I eventually got through at 0840, after 23 attempts. I do not blame the staff at the surgery. They really are doing the best that they can do in an adverse situation. More doctors are needed, more frontline staff are needed, less management are needed, which would then reduce the possibility of confidential information being sold to the highest bidder, in my opinion. |
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| old_miner |
**** There you go again Old Miner, you lack the imagination to understand what this data could be used for so you slag off everyone who does understand the issues as morons. Well I'm not educating you on this issue, go do some reading and come back and comment some more when you are more informed. **** Please educate me on where I am wrong. It is the old lies, damned lies and statistics debate. Trouble is most people have no idea about statistics so rely on lies. If everyone had a good understanding of statistics much of the media and many politicians would not have a job. Ignorance is not bliss; it is dangerous. |
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| Snowdrop |
NHS admits breaking rules for sharing medical information www.bbc.co.uk/news/health-26329748 |
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| jonno |
this post has been edited 2 time(s) quote Please educate me on where I am wrong. It is the old lies, damned lies and statistics debate. Trouble is most people have no idea about statistics so rely on lies. If everyone had a good understanding of statistics much of the media and many politicians would not have a job. Ignorance is not bliss; it is dangerous. That last bit of your post is so heavy with irony that it risks imploding on itself and becoming a black hole!! The data will include date of birth, post code and NHS number. With this data and other databases out there it will be possible to to tie the medical information back to an individual very easily. For example the electoral register can be bought and contains your name, address, postcode, date of birth and gender. You may not understand how easy it is but in the past I have worked as a programmer on some very big systems and I can tell you that such a task would be trivial with the database systems available nowadays. This issue is nothing to do with statistics and your rhetoric is stale regurgitated nonsense that you are just parroting without thought. I don't expect you to beleive me and this post is mainly for those people who might otherwise think your arguement has merit, which I have just demonstrated it does not. [Edited because I messed up the bold tags] |
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| Snowdrop |
Thank you Jonno for clearly communicating just how easy it is to gain information from given details. I am sure more stories will be published about who exactly has had the information from our medical records that we were unaware of. |
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| Snowdrop |
www.bbc.co.uk/news/health-26347026 www.dailymail.co.uk/news/article-2566397/The-insurance-firms-buy-data-NHS-patient.html |
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| Snowdrop |
Jeremy Hunt now talking of law to be passed to stop data been accessed by other firms www.dailymail.co.uk/news/article-2570567/Cashing-patient-records-banned-But-youll-opt-private-details-database.html |
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| Snowdrop |
www.independent.co.uk/news/atos-to-work-on-nhs-care-data-project-despite-ongoing-mess-over-disability-benefit-assessments-9153885.html ATOS who could not manage disability assessments have now been given the contract to work on extracting data from medical records. |
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| Replies in this thread : 37
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events sale / wanted general have your say looking for.. skippy greengrass |
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DON'T FORGET THE SUBJECT IS >>>>>>>> Forums Home > General Forum > Sharing of Medical records |
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