Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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![[Read Rapid Response]](/icons/misc/sectionDOWN.gif)
Electronic patient records: don't bother trying?
- Ruth J Boaden (15 February 2008)
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Coding
- Neil Bhatia (17 February 2008)
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Advanced HealthSpace account piloting
- Dr Gillian A Braunold (17 February 2008)
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Confidentiality needs Confidence
- Andrew J Ashworth (17 February 2008)
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Identity registration as well?!
- Phil Booth (18 February 2008)
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The right to confidentiality
- Peter von Kaehne (18 February 2008)
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Ruth J Boaden, Professor of Service Operations Management Manchester Business School, M15 6PB
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Whilst I don't disagree with the sentiments expressed by Jonathan Gornall I think we need to be realistic about the oeprational details of getting access to your own records. I live in an area where the uploading of records to the spine is being piloted. The practice which I attend has done this, and I have tried to register to access my records. I can get so far by entering details on to the computer from my own home but then I have to do the following (according to the healthspace website): "Stage 2: Identity check * We will ask you to take a printed copy of your application form (or your written application number) and your identity documents. * We will post a date, time and local venue for your identity check to the news service on this website. This news service will be added automatically to your personalised home page after you have filled in the application form. * You must provide 1 document as proof of personal identity and 2 documents as proof of address. " In my area, the date and time information shows that I need to go to my local PCT office (6 miles from my home) at some time between 9-5, Monday to Friday (difficult when you are in full-time employment somewhere other than that area)with a series of documents to prove my identity. My own GP surgery (nearer to where I live and with more flexible access times) know who I am but are not somehow deemed suitable to confirm my identity. I can apply for bank accounts, passports etc by proving my identity by sending documents by post - not ideal, but not as difficult as the NHS is making it for me to access information that I have a right to see. So I haven't registered - and therefore haven't been able to see my records - and nor have lots of other patients (and NHS staff?) I guess. Opting in and viewing my own records is proving logistically too difficult - I wonder when this will be noted by those promoting this system? Until it is, then patients at least will not get the full benefit of electronic patient records. Competing interests: None declared |
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Neil Bhatia, GP & Caldicott Guardian The Oaklands Practice
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Thank you for your kind link to the site, much appreciated. Thankfully, my keyboard skills - honed after years as a GP with an interest in IT - mean that I will not be accidentally miscoding 93C2 for 93C3. In fact, I can honestly say that after coding hundreds of opt outs, I have yet to miscode a single patient record in that way. Our patients can be trustful of that. And I am sure that my GP colleagues around the country will take as much care as I do to ensure that particular code, 93C3, is added accurately. Especially that code. Of course, that's not to say that I wouldn't code 93C2 for any patient who wanted me to register their desire to upload their data. That would be giving me their explicit consent, and I would willingly code their explicit consent with equivalent accuracy. Though I have yet to receive such a request. Competing interests: Author of the Oaklands Practice web site |
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Dr Gillian A Braunold, Clinical Director Summary care Record & HealthSpace NHS Connecting for Health Vantage House Leeds LS1 4HT
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In answer to Ruth Boaden's problems with registration for HealthSpace advanced accounts. Currently as readers may be aware we are piloting the advanced HealthSpace accounts in the parts of the country where the Summary Care Record early adopter programme is ongoing. It is live in 3 PCTS who are all trying varying methods and opportunities for front office registration. Offering a secure on line facility for patients to view confidential material must be accompanied by secure registration of identity and we are under the guidance of the Information Commissioner doing this identity registration to e-gif level 3. This is not without of course effort on the part of the patient seeking to open the on line account since it involves taking documents to prove their identity to a front office. There are of course plans to improve the situation as Professor Boaden explains- the inconveneience may be too high to encourage registration. The team are looking to enable the users of smart cards within the Health Service who have already been identified to a e-gif level 3 identity to be able to open an advanced health space account without further inconvernience if they so wish. The team are also exploring opportunities for PCTs to be able to place contracts with colleagues in Primary Care eg GPs and Pharmacists to enable front office registration and document checking at times outside of 9-5 in settings that are familiar to them within their locality as health service contact points. Giving patients access to their own secure records on line is a key plank in strategically enabling a better informed patient and improving overall communication. Competing interests: Clinical Director Summary care Record & HealthSpace |
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Andrew J Ashworth, GP Davidsons Mains Medical Centre, Edinburgh, EH4 5BP
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When we are told things "in confidence" patients need the confidence to tell us. Gornall opines on "greater good", "obvious advantages" and embracing electronic patient records (though his argument is not about them but about holding them centrally) "pragmatically". Presumably he is in favour of jailing parents who fail to have their children immunised as reported on page 348 of this issue. In his "brave new world" of information sharing, he rightly predicts both that there will be cock-ups and that the sky will not fall in. Nevertheless patients confiding their most intimate secrets with their personal GP (a concept that Big Brother Brown appears to seek an end to anyway) will inevitably become suspicious and guarded and thus become less open, leading to a general reduction in the quality of the information held and thus the care given. We know the system will leak a bit - we need to know "who, what, why, where, when" so that we can stem the flow to retain confidence in our confidentiality. As well as cock-ups there will be corruption - for example the divorce courts might become early recipients of information bought from those who are unscrupulous and have access. There will be errors (as he reports) - easily fixed by an old fashioned local GP on a locally held e-record but presumably requiring interminable bureaucracy by the State's central repository! There will also be omissions, particularly if patients without confidence in the system fail to disclose or request non-disclosure of important information. Personally, I'm in favour of an Emergency Care Summary being available, not only in an emergency but also in outpatients where accurate information on current drug treatment seems sparse. Sarcastic vilification of those with real objections rather than addressing their concerns simply divides the debate into extremist camps and makes a generally accepted solution less likely. It might give more confidence if proponents of change stopped insisting and started to listen rather than simply shouting even louder. Competing interests: None declared |
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Phil Booth, National Coordinator NO2ID, Box 412, 19-21 Crawford Street, London W1H 1PJ
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Dr Braunold's comment that "Offering a secure on line facility for patients to view confidential material must be accompanied by secure registration of identity", while true under the proposed Care Records System, reveals a pretty fundamental problem with it. Were the uploading of people's details done ONLY with their explicit consent and by their GP at a face-to-face meeting then seperate confirmation of identity would be unnecessary. If the GP could not determine consent or that the person whose details are to be uploaded is there in the room with them, then the details should simply not be uploaded. And an account need not be created. Dropping the requirement for a seperate meeting (whether with a GP, pharmacist or other) at which a 'HealthSpace' account is opened might indeed save time and money - and could give greater assurance that patients are properly informed as to what is happening with their details. This would, of course, need to be done before ANY details are uploaded - i.e. for the Summary Care Record (SCR). By insisting on the use of implied consent and automated uploading (a flawed model that Mr Gornall's article utterly fails to address - how does he know that everyone whose SCR has already been uploaded even knows that this is the case? Dr Braunold doesn't - and she is leading the programme) Connecting for Health (CfH) is not only foisting an additional, some might say "excessive", burden on patients who in future may wish to check or access their own information (a supposed benefit of the scheme), but is increasing the amount of personal information that a person must provide ("documents to prove their identity") in order to do so. [Furthermore, were the government's proposed ID card to be used as a form of identity verification and were the individual's National Identity Register Number to become associated with their HealthSpace record, the very fact of that verification would provide a link on the National Identity Register to an individual's medical records. The possibility of such a link proved so controversial during the passage of the Bill that the government was forced to amend the ID cards legislation.] I have no problem if Jonathan Gornall - or anyone - wishes to have his personal and medical details uploaded or made accessible to a whole range of people and organisations. It's down to him who he trusts, however naive I might belive that trust to be. But I and many others besides - including, it seems, the vast majority of GPs - am unlikely to trust any agency that proposes for its own convenience to assume people's consent, upload their information and then demand that they identify themselves to it (or another part of it) in order to access what was theirs in the first place. Has CfH quantified the cost to the patient and to the public purse of this additional and entirely unnecessary imposition - if so, how much? If not, why not? That more people have opted out UK-wide (200,000+) than have had their SCR uploaded (150,000) to date suggests that when people are made properly aware*, they will exercise their right to opt out. I am sure that Dr Braunold disagrees, and that she and CfH are doing what they can to avoid this - but I am somewhat reassured that she believes people should at least have this right. Maybe CfH will re-evaluate the entire process of 'implied consent' once Professor Greenhalgh presents her report in the summer? One can only hope that it takes the time to reconsider. -- * Where, for example, does the literature sent to patients in "early adopter" sites mention the Secondary Uses Service? And how does CfH justify saying that the number of people with the opportunity to access one's clinical records will go down, when it is promoting the system on the very basis that it will make your information accessible to people other than your own GP, in arbitrary locations around the country? Competing interests: Co-founder of NHS Confidentiality campaign, TheBigOptOut.org |
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Peter von Kaehne, GP Argyll
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The right to confidentiality has nothing whatsoever to do with our status as a tax payer or lack of it. It is a cornerstone of medical practice since ancient times. Abandoning it would serve The Greater Good exactly how? And while confidentiality breaches facilitated by central data storage may not bring the sky down on a grand scale (what makes the author so sure of that?), they can and will most certainly be devastating for the individuals concerned. Competing interests: None declared |
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