Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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![[Read Rapid Response]](/icons/misc/sectionDOWN.gif)
For patients' sake give us a genuine choice
- Roger M Goss, P. O. Box 23732 London SW5 9FY (22 July 2007)
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Good idea:; wrongly introduced
- Joyce W Robins, P. O. Box 23732 London SW5 9FY (22 July 2007)
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Human Rights, Data Protection and Informed Consent
- Jan Vyjidak (22 July 2007)
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e-health records
- Lyall M Eccles (23 July 2007)
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Response to issues raised by my article
- Marlene Winfield (23 July 2007)
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Pragmatism is required if the benefits of EHR are to be realised
- Claudia Pagliari (24 July 2007)
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Re: Response to issues raised by my article
- Paul Thornton (24 July 2007)
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Legal liability
- Marlene Winfield, Vantage, 40 Aire Street, Leeds LS1 4HT (24 July 2007)
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Why are GPs in the UK saying no to the EHR?
- Antony F Sara (24 July 2007)
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Reply re Liberty and Justice
- Marlene Winfield, Vantage, 40 Aire Street, Leeds LS1 4HT (24 July 2007)
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Could this help
- krishna chatterjee (25 July 2007)
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Re: Why are GPs in the UK saying no to the EHR?
- Claudia Pagliari (26 July 2007)
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Would a patient card work?
- Marlene Winfield (26 July 2007)
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A simple solution - do the right thing
- Roger M Goss (27 July 2007)
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Partnership of Trust
- Amir S Hannan (27 July 2007)
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Civil liberties and privacy concerns
- Phil Booth (1 August 2007)
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Is opting out in patients' interests?
- Marlene Winfield (3 August 2007)
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In some instances, clearly yes!
- Phil Booth (8 August 2007)
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We owe the public accuracy
- Marlene Winfield (9 August 2007)
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...and a fully informed choice.
- Phil Booth (17 August 2007)
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Roger M Goss, Co-director Patient Concern, P. O. Box 23732 London SW5 9FY
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The reason GPs are threatening to boycott the system is simple. They know the importance of patient/doctor trust. This rests on informed patient choice and consent. Electronic records are being introduced on the basis that not having agreed to a record constitutes agreeing to having one - a so-called opt- out system. Many doctors recognise going this route is exploiting inertia and ignorance to 'get a result'. After all, the authorities have admitted that more than 1% non-participation would hinder secondary uses of patients' records. Presuming consent is wrong in principle, going against the intention and spirit of the Department of Health's own 'Good practice in consent', the Human Tissue Act, the Mental Capacity Act and regulatory bodies' rules on protecting patient privacy and confidentiality. Competing interests: None declared |
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Joyce W Robins, Co-director Patient Concern, P. O. Box 23732 London SW5 9FY
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So Marlene Winfield believes that all patients should be delighted at the idea of electronic summary care records. If they are such an obvious blessing, why not invite patients to ‘opt in’ to the system? She will be knocked down in the stampede. This was what the BMA and Patient Concern have always wanted. Instead we have been presented with a system of ‘presumed consent’ where the vast majority of patients will have no sight of their records to be uploaded. ‘Presumed consent’ is no consent at all and it is all credit to the BMA for recognising this. Competing interests: None declared |
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Jan Vyjidak, Trainee Solicitor & Medical Law (Cardiff Law School) Student, Assistant to Professor Cardiff University, School of Medicine, CF14 4XN
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Dear Sirs, leaving aside important statistic considerations with regards to the total number of situations when UK patients died or were seriously injured as a result of missing information about their allergies or previous adverse drug reactions (in the future available via Summary Care Record - SCR), it is important to draw attention to National Joint Registry. All data on this register are anonymised and patients cannot be identified. However, all patients were asked to sign an informed consent form (1) before their data could be processed for the purposes of NJR. Now, with "Early Adopters" programme allready under way, employees working for Connecting for Health are soon expected to visit all GP surgeries and transform all paper medical records into electronic form and upload all existing patient records onto the Spine part of which will be accessbile by any NHS staff via SCR. All this will happen without informed consent given by patients. As this approach raises data protection issues, patients will have an option to seek compensation from their GPs pursuant to Data Protection Act 1998. Further, processing of patient data can infringe patients' right for respect of their private life set out in Article 8 of the Human Rights Act 1998 and give rise to even more compsensation claims. As of yet, the Department of Health have not issued any statement that it is ready to indemnify GPs for any damages if patients are successful with their compensation claims. This might be one of the reasons why GPs are hesitant to proceed without patients' informed consent. Unless informed consent from patients is obtained, two hypothetical questions from Strasbourg might soon be "What is the legal basis for the NHS Care Record Service?" and "Is this service necessary in a democratic society for the protection of health?" One answer could be that in all 45 Council of Europe Member States such service is not in place at all. Despite the enormous potential benefits of NHS Care Record Service, the risk of litigation seems to enormous as well. Jan Vyjidak (1) http://www.njrcentre.org.uk/documents/consents/c_index.htm Competing interests: None declared |
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Lyall M Eccles, Retired GP N/A Home RH 14 0SY
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GPs are now accessible only from 8 – 6. Having been one, I am sympathetic. Simple sums reveal that their wisdom and their records are now unavailable for more hours than they are. Illness does not keep office hours, and the public hate the void. How mindless and irresponsible, then, to deny record summaries to the colleagues caring for their patients when they are off duty. What is their problem? Loyalty follows relationship and reputation, rather then records. Recent tragedies have emphasised the value of continuity, and shared information. Ill or panicking people do not summarise their case well, nor do they recall all the names of their drugs. Confidentiality can have disadvantages, and make the task of the out of hours doctor impossible. Patient’s welfare must be paramount. Marlene Winfield (BMJ last week) tells us the BMA is advising GPs to boycott the provision of summaries. She states clearly the advantages of the summaries, and assures us the patient will be able to vet the information made available. The availability of such a summary out of hours seems to me so sensible, that most patients should request it, and should certainly not be prevented by their doctor’s union. So the BMA is proposing that the patient must actively opt out of the use of his corpse, but also proposes to deny said patient the opportunity to opt in to the care of his live health. As a doctor I don’t get it. As a patient I resent it. Dr Lyall Eccles Competing interests: The views expressed are my own. My son is Clinical Director of Connecting for Health |
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Marlene Winfield, National Patient Lead NHS Connecting for Health, Vantage, 40 Aire Street, Leeds LS1 4HT
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It is important to emphasise that the approach NHS Connecting for Health has adopted is based on research, consultation and ongoing advice from major patient, civil liberties, consumer, citizen and ethnic minority groups and regular meetings with the Information Commissioner. We are working very hard to balance the twin priorities of information sharing for safe care and patient confidentiality. There are serious problems in the NHS that need to be addressed, and addressed urgently. By taking advice from those who represent the very people who have the most to lose from improper information-sharing and the most to gain from proper information-sharing, we are carefully putting in place a system that will meet both needs. I note that the BMA supports an opt out approach to organ donation because organ donation will save lives and an opt in approach has not proved effective enough. An opt in approach to information-sharing was abandoned in Alberta, Canada because the small numbers opting out did not justify the time taken. Like Scotland and Hampshire/Isle of Wight who have similar records now to the Summary Care Record, the opt out system has not proved a problem for patients in Alberta. Every adult will get a personal letter informing them of what will happen with a lot of other publicity over the four month decision period. There will be advice sessions in the surgery and elsewhere. Each Early Adopter community is working with local voluntary sector and community groups to ensure we reach those who have special communication needs. It is also important to remember that the system operating now is far from ideal with regard to patient confidentiality and the new system offers a number of new safeguards, including enabling people to see who has been looking at their records. There is far more choice for patients than now about who sees their information. Confidentiality is important to all of us. Individuals will be much better protected by the new system than the existing one. Competing interests: Author of the article |
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Claudia Pagliari, Senior Lecturer in Primary Care University of Edinburgh EH8 9DX
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Although the evidence-base is still weak [1], research, experiential learning and expert consensus are converging to suggest that electronic health records can improve the efficiency, quality and safety of patient care; for example by avoiding lost paperwork, increasing legibility, and ensuring that all parties involved in a patient’s management have access to accurate data to inform their decision making. [2] Giving patients access to their own records can help to identify potentially dangerous diagnostic or prescribing errors, foster communication and trust in the healthcare encounter and encourage involvement in health self management, and may be of particular benefit to those with chronic or recurrent illnesses.[3] Studies of patients’ attitudes indicate that although some are concerned about sharing sensitive sexual and mental health information, most believe that electronic health records are a good idea. [4, 5] Experience of patient access to electronic health records in the United Kingdom and overseas has been almost universally positive and many in the United States and Europe are even choosing to purchase technologies to enable them to access, manage and share their data. [3] While the academic literature and news media are awash with articles highlighting the technical and legal risks of electronic health records, reports describing cases where patient confidentiality was actually breached, or a patient was physically harmed through this, are conspicuously absent. (Most anecdotal reports relate to data held on paper or portable computers, rather than electronic databases.) To move the debate forward we need to weigh the risks of electronic health records against their benefits and to separate concerns over confidentiality and safety. We also need to take account of individual preferences and how these might change with circumstances. My mother refuses to use a cash machine, speak to telesales staff or use a store card, for fear of identity theft. But I wonder how she would feel if she was being cared for by multiple staff in a busy hospital or was discharged without her information being passed to community health carers in a timely fashion? Large segments of the population already use internet banking, despite the arguably greater personal risks of fraud, purely to harness the benefits of convenient access. Of course, choices must be given openly and with a means to action them. Giving people the opportunity to restrict access to all or parts of their record provides considerable protection for those with greater privacy needs. While asking all patients to formally consent to having a record would be desirable, this is unlikely to be feasible and could jeopardise the whole initiative. [6] The key is to raise public awareness and understanding to the point where people can make informed choices. At the end of the day, patients want to know they are getting a first class service (which an effective electronic record can facilitate), they want to be informed (about what data are held where, who is likely to see what, and their rights), they want to be in control (able to see their record and to restrict access by others), and they want to use the internet. While it won’t be without its teething troubles, the NHS Summary Care Record has the potential to meet all of these needs. Centralised data storage clearly requires a shift in patient trust from the individual clinician to the service as a whole. Handing this is a delicate process, and scare stories about potential confidentiality breaches (for example the false suggestion that “anyone in the NHS” will be able to see your records), and incitement to legal action, damage public confidence and are a threat to potential quality improvements. We live in an imperfect world and compromises will have to be made if the benefits of electronic records for patients are to be realised. [1] Clamp S, Keen J. Electronic health records: Is the evidence base any use? Medical Informatics and the Internet in Medicine. 2007 32(1) 5-11 [2] Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. 2001 Washington: Institute of Medicine [3] Pagliari C, Detmer D, Singleton P. Electronic personal health records: emergence and implications for the UK. 2007 London: Nuffield Trust. [4] Macdonald l, Ritchie S. Health online: public attitudes to data sharing in the NHS. 2005 Glasgow: Scottish Consumer Council. [5] NHS Information Authority, ERDIP lessons learned topic summary No 4: Patients, Birmingham, 2003 [6] P Singleton, ‘Do no harm’, eHealth Insider 2005 Competing interests: I sit on the Connecting for Health Evaluation Programme panel, but as an independent academic. |
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Paul Thornton, General Practitioner Kingsbury, Warwickshire
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It should also be stressed * that even with excellent communication skills, it is usually difficult to obtain contemporaneous consent from people who are already dead. It is a matter of daily routine for GP’s to obtain consent from the living. * that the risk analysis (1) commissioned by Connecting for Health (CfH) concluded that overall the CfH proposals would be detrimental to care because the erosion of confidentiality would inhibit patients from divulging essential information to clinicians. * that the British Computer Society (2) have recommended system redesign that would enable the better sharing of relevant information where it is likely to be needed with substantially less risk to patient privacy. * that contrary to Alberta, Scotland and Hampshire, CfH are offering neither an opt-out or an opt-in. If the current plans of Connecting for Health are implemented then identifiable information about all patients will be disseminated on the Secondary Users Database and on widely accessible Detailed Care Records, even if they have exercised the limited opt out from the summary care record.(3) *that recent oral evidence (4.) from Liberty and Justice, the leading civil liberty organisations, to the House of Commons Home Affairs Select Committee enquiry in to the surveillance society is peppered with concerns about the NHS database. 1. http://www.nhsconfidentiality.org/wp-content/uploads/November%20- %20NHS%20Care%20Records%20Report.pdf 2. http://www.bcs.org/server.php?show=ConWebDoc.8951 3. http://www.ardenhoe.demon.co.uk/privacy/decoy.pdf 4. http://www.publications.parliament.uk/pa/cm200607/cmselect/cmhaff/uc508- iv/uc50802.htm Competing interests: The author is dependent on a functioning clinical computer system for the care of patients and to secure practice income. |
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Marlene Winfield, National Patient Lead NHS Connecting for Health, Vantage, 40 Aire Street, Leeds LS1 4HT, Vantage, 40 Aire Street, Leeds LS1 4HT
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This is just a thought for which I don't know the answer. The point was raised about legal liability of doctors when a patient objects to information sharing. The other side of the coin also needs to be considered. What happens if I as a patient need out of hours care and suffer a prescribing error that injures me because, as a result of the GP boycott, the person treating me did not have access to information that would have been in my Summary Care Record? Who is indemnifying GPs against that? Competing interests: Author of the article |
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Antony F Sara, Director Clinical Information Systems Prince of Wales Hospital Randwick 2031
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It is not clear to me why GPs in the UK are saying no to the EHR. My experience in Australia would suggest that privacy is the reason used in public to argue against such systems - but other issues are below the surface - including the lack of proper documentation to start with, fears about the easy availability of records allowing patients to easily go to other practices, and fears that e-records will permit of greater scrutiny and accountability of GPs by patients and regulatory authorities. I would be interested to learn what the deeper reasons might be in the UK. Competing interests: None declared |
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Marlene Winfield, National Patient Lead NHS Connecting for Health, Vantage, 40 Aire Street, Leeds LS1 4HT, Vantage, 40 Aire Street, Leeds LS1 4HT
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Of course Liberty and Justice have raised concerns about electronic health records. They wouldn't be doing their jobs if they didn't. We raise concerns internally too, and listen to the concerns of patient and citizen groups, and put in place measures to address them. That is how we are developing electronic health records. My point was that neither Liberty nor Justice to my knowledge has come out in support of a boycott. Marlene Competing interests: Author of the article |
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krishna chatterjee, Salaried GP LS8 4HA
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It is an extermely difficult task that Connecting For Health has. Nothing like it has ever been acheived .. not at its scale. With the almost infinite amount of data perhaps the solution may be to incorporate the idea below. Empower those patients, who feel their needs require the information to be on multiple sites, to have their own copy of it. Give them the records on a card. Make all companies producing medical records software produce updates after a certain agreed date. These downloads ensure that all companies can read each others information via this card. Those patients whose lifestyles mean they are at many locations around the country can opt for this card after they sign all responsibility over to themselves. Patients get to know information if they want to. They can ensure who they give consent to look at their records. Doctors who need the information from patients willing to volunteer can do so. A mirror copy is on their local surgery computer, which they are expected update regularly to ensure that the information is valid. This again would be the patients responsibility as well. What do you think ? Competing interests: None declared |
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Claudia Pagliari, Senior Lecturer in Primary Care University of Edinburgh, EH8 9DX
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The apparent level of resistance to EHR in the UK is often surprising to those from countries where it has been greeted more positively despite concerns over security and privacy. Underlying motives and fears, such as those suggested by Antony Sara, are no doubt influential, given the challenges EHR presents around work patterns, power and accountability. Connecting for Health has recently commissioned an independent study to evaluate the implementation of the Summary Care Record in early adopter sites, which will shed more light on issues surrounding professional attitudes and acceptance of change, as well as determining whether working GPs are as resistant as some commentary suggests they are. It is notable that an equivalent Emergency Care Summary has been rolled out in Scottish primary care with minimal resistance from health professionals or patients. Key facilitators appear to be Scotland’s small size and widespread experience of a national GP records system; good information for patients on data storage/use/access and personal rights, developed in collaboration with consumer groups; and the fact that the summary record is, for the time being at least, being delivered independently of a national integrated care record, thus reducing its threat as an agent of Big Brother. As English clinicians and patients gain experience of the NHS Summary Care Record over the next year, it will be interesting to see whether attitudes shift and what hidden barriers are uncovered. Competing interests: Advisory group member, Connecting for Health Evaluation Programmme |
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Marlene Winfield, National Patient Lead NHS Connecting for Health, Vantage, 40 Aire Street, Leeds LS1 4HT
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A contructive suggestion. How would it work out of hours when a very ill patient is on the end of a phone or in an emergency when the patient might be too ill to produce the card? Would it mean that anyone seeing the patient in hospital could not see the information until the patient was in the room with them? How would a GP keep it updated with information from secondary care that may take some time to get there? I think when the Department of Health looked into smartcards a long time ago they found a number of problems. Competing interests: Author of the article |
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Roger M Goss, Co-director Patient Concern, London SW5 9FY
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In my three years as a lay member of the BMJ editorial board, I don’t remember the author of a published piece responding to virtually each rapid response as they arrived. Methinks the lady doth protest too much. Whenever the Department of Health wants to do something badly enough and it fears its plan may not meet with universal approval, ensuring real patient consent is dismissed as ‘impractical’. Connecting for Health only has to do the right thing. Then doubtless doctors would withdraw their boycott. At the moment, they cannot see any other way of preserving all their patients’ trust and confidence. Competing interests: None declared |
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Amir S Hannan, General Practitioner Thornley House Medical Centre, Thornley St, Hyde, SK14 1JY
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I am arguably in the most unique position in the country. In 2003, I offered patients copies of their GP held records on floppy disk as well as on CD-Rom for a standard charge of £10. I conducted research into the "proof of concept" that we could share with patients their own personal data with UMIST (copy available of report for anyone that would like it - please e-mail me). We identified some of the benefits as well as the risks as perceived by patients who had seen their records for the first time in an electronic format. Later, our practice became the first practice in the world to offer to all its patients full access to the GP-held record over the internet via the EMIS / PAERS solution at no cost to the patient. It is however an explicit opt-in process that patients have to go through with a fairly rigourous consent procedure (please contact me if you would like to see it and have a go yourself!). The service has been available for over a year now and I have described my experiences extensively. My patients have been to a number of conferences to share their views with the wider world including the BMA/CfH conference earlier this year ("It's about the Patient, Stupid"). Most recently one presented alone at the British Association of Medical Managers. The first group of patients are now beginning to come forwards to ask for access to their records. But they are a very small minority. Many of my foreign speaking patients, those with learning difficulties, those in residential and nursing homes, those with significant co-morbidities who could benefit and should benefit have not signed up for the service. Do I wait until I have physically spoken to each one of them. In the meantime, do I continue to allow them to have a "standard level of service" when they could benefit from an "enhanced service" where the clinician looking after them outside the GP practice (Out of Hours, community clinic, A&E, outpatients, whilst abroad on holiday etc) has more information than simply what the patient can remember or a letter from me that has been dictated weeks ago and may well be out of date? In an ideal world, all my patients would sign up for full access to GP records. But that is not going to happen quickly - the culture is not there yet where people are asking for this as routinely as say getting a passport or a driving license. This is why I think the Summary Care Record does have an important place in my practice for some of my patients alongside the full access to GP records over the internet as well as copies of records on disk for those who want to carry their personal information on their own person. Many colleagues have asked how I have managed to "make the leap of faith" and enable patients to access their health records despite all the worries about privacy, confidentiality and potential errors and mistakes that may lie in the record. Patients themselves do ask me about how secure the system is and whether it is safe or not but also the opportunity to look at the record and help to identify any errors that may be in them or how it might help them. There are fine arguments for and against. I openly discuss these issues with them. Ultimately we have to decide the benefits of having information available for the benefit of the patient and the clinician or continuing to work in a vacuum where there is no or little information available. As medicine becomes more complex and the risks to patients by not having the information available where critical clinical decisions are being made become greater, the value of that information being available will increase. What happens if a GP practice or others choose not to embrace such technologies and a patient subsequently comes to harm because the clinician did not have the vital bit of information that could have been on a summary care record or patient access to the GP record? Do we really want to take full responsibility for the total care of our patients or are we willing to share some of this responsibility with the patient and the rest of the NHS? The relationship we enjoy with our patients is critical in this. It is a "partnership" and this partnership is based on the premise that I trust the patient to tell me as best they can about their problem or issue. In return they trust me to do what is best for them from a medical perspective. The technological solutions have their merits as well as their weaknesses. We now need to understand how best to harness them all. My preference is to have clinical and patient engagement to understand these issues better so that in turn you can have the same discussions with your patients as I enjoy and we gain confidence in what the system is offering and can offer. Despite the potential and real risks, my patients time and time again agree that having some information available is better than none at all. My feeling is that patients will show us all the way forwards and help us to develop the "Partnership of Trust". For further info please click on URL, click on Round Table and the presentation "Towards a Partnership of Trust". Please contact me if you would like a copy of the paper. There is also a blog on the same site where you can see comments patients of mine and others have described some of their personal experiences. http://2007.icmcc.org/php/show.php?p=2007sessions#2 Competing interests: I am a member of the Records Access Collaborative working with EMIS / PAERS to enable patients to access the full GP-held record over the internet independent of NHS CfH. I am also on the HealthSpace Reference Panel and the National Clinical Reference Panel which is charged with determining what will be available on the Summary Care Record for patients and clinicians to view. I am also a member of the Clinical Leaders Network (www.cln.nhs.uk) |
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Phil Booth, National Coordinator, NO2ID NO2ID Campaign, Box 412, 9-21 Crawford Street, London W1H 1PJ
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Marlene Winfield is simply incorrect to say that there has been no support from civil liberties groups for boycotting the SCR - the creation of which, as Paul Thornton points out, will (according to current plans) lead inevitably to the uploading of Detailed Care Records. NO2ID, established in 2004 by members of the public and a number of existing civil liberties organisations - including Liberty - to oppose the proposed ID card and database state, helped launch TheBigOptOut.org (TBOO) last November in direct response to concerns expressed by both patients and medics about the implications of the proposed Care Record system. Liberty and Justice have expressed their concerns, which - as lawyerly lobbying and policy-related organisations - is what you might expect. Others with equally legitimate concerns (and greater knowledge and experience of databases and IT security) have stepped in to provide a practical response. Without sustained pressure from TBOO, its supporters and others - not to mention the 100,000+ patients who have already exercised their right to opt out using TBOO's letter - I doubt that CfH would be taking such great pains to try to sell its pseudo-opt out. It certainly seems to be doing the absolute minimum possible to alert patients to the FULL consequences of permitting an SCR upload. The BMA boycott is to be applauded - it represents the concerns of a majority of both patients and GPs [1]. To avoid such action, CfH need only to have offered patients a genuine choice. For a body that must rely on the public trust to betray not only patients, but the very GPs whom it expects to act against their conscience and better judgement (and thereby expose them to as-yet-undefined liability) is appalling. And ultimately counter-productive. Even setting aside privacy for a moment, the medical benefits of centralised records hardly seem as overwhelming or black-and-white as have been claimed. Less intrusive systems such as MedicAlert bracelets have allowed patients to carry critical health information with them for many years. Pregnant mums carry their notes with them for precisely the reason that they are the best people to look after them. I suspect that the number of instances where treatment is made impossible or dangerous by lack of a complete medical record is proportionately very few [2], compared to, e.g. risks introduced by breaching confidentiality - which may mean people failing to disclose full details to their doctor for fear of who else might access the information at a later date. And, in an emergency or if the patient is unconscious/uncommunicative, it may prove just as impossible to identify the correct record as to check with a GP who's not on duty. Far better to allow people with no concerns about their privacy - studies suggest this may be as high as 20% of the population - to opt *in* to a Care Records system that could then PROVE its efficacy (or not) before attempting to impose such a complex and untested 'solution' on all patients. Pilots using implied consent are no substitute. -- 1) Medix and JRRT polls show over 50% of GPs and patients have significant concerns - see, e.g. http://society.guardian.co.uk/health/story/0,,1953212,00.html and http://society.guardian.co.uk/e-public/story/0,,1960271,00.html 2) If not, let's see the evidence or at least a full cost/benefit- type analysis that exposes ALL the assumptions. Competing interests: Founder member of TheBigOptOut.org |
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Marlene Winfield, National Patient Lead NHS Connecting for Health, Vantage, 40 Aire Street, Leeds LS1 4HT
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NHS Connecting for Health is working closely with patient, citizen, and civil liberties groups to find the right balance between sharing information for good care and protecting patient confidentiality. We are taking measures to address their concerns at each stage as the Summary Care Record Develops. Primary Care Trusts will be writing to all adults in England four months before their Summary Care Record goes live, giving them a range of choices for limiting their participation. This process has started in a few early adopters. The effectiveness of efforts to inform people of their choices is being independently evaluated by University College London. Lessons will be learned from the early adopter sites to apply to the further roll out of Summary Care Records. The figures given for those who have boycotted the Summary Care Record do not accord with my experience of talking to patients and patient groups. I would be interested to know on what basis the 100,000 figure was calculated. The current situation is not sustainable. Careful introduction with independent evaluation is the way to proceed, not a boycott. This is about patients, not politics! Competing interests: Author of the article |
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Phil Booth, National Coordinator, NO2ID NO2ID Campaign, Box 412, 19-21 Crawford Street, London W1H 1PJ
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Thank you for your reply, Marlene. The 100,000+ figure is derived from the number of times TheBigOptOut (TBOO) website has served out personalised versions of its '93C3' opt-out letter [1] - see http://www.TheBigOptOut.org/optoutletter - and the fact that since last December, a number of GP practices have been putting blank copies of this letter and other information into their receptions for patients to use. GPs working with TBOO have done straw polls of their colleagues, and have yet to come across a practice which has failed to receive at least one or two opt-out letters/requests. Some have received significantly more than that. I fail to see how UCL's evaluation - whether independent or not - will be able to determine the effectiveness of the implied consent model unless compared to other methods of allowing people to exercise choice, including a proper opt-in approach. Or is "effectiveness" to be measured merely by how low an opt-out rate one can achieve? On the evidence of the response at one Scottish practice where the GPs themselves contacted each of their patients in similar circumstances [2] you might expect opt-out rates some FOUR orders of magnitude higher (i.e. over 1000%) than Connecting for Health currently achieves by sending a single mailing 4 months before assuming consent. I and many others do not believe that CfH's definition of "effective" matches our understanding of the word. I do however completely agree with you that this should be about patients, not politics. NO2ID is a non-partisan campaign - we work with and are supported by people of all parties and none - that became involved in this issue only because members of the public and the medical profession told us that they felt their concerns were not being properly addressed [3]. DH/CfH's decision to centralise all records without seeking the explicit consent of each patient follows an increasingly obvious political agenda of this government but represents just the latest in a long history of such battles for control - going right back to the 'Lloyd George envelope' compromise, if not before. Failing to take into account how strongly people care for medical confidentiality could prove to be a costly error. Mere 'tweaking' of an approach to consent that is fundamentally flawed in an attempt to construct such a 'brittle' centralised solution (i.e. one that relies on almost 100% take-up to succeeed) risks eroding trust in the NHS - especially when the supposed protections fail [4] - and may compromise healthcare in ways I have listed above, amongst others. It certainly puts patient privacy at risk. Most people still consider their health to be a private matter between themselves and their doctor, and a majority of GPs have indicated they wish to respect this. Given these clear indications it is quite plain that, in some aspects at least, delivery of the project itself has become become more important to CfH/DH than many patients' 'best interests'. -- 1) Legal advice we have taken indicates that patients do NOT have to call on Section 10 of DPA in order to opt out. And unless CfH intends not to honour the guarantee of the 93C3 stop code, it is still the simplest way for people to exercise their right to medical privacy without incurring additional unwanted 'marketing' or other attention. 2) See Letters, p501, British Journal of General Practice, June 2007. 3) Not only by CfH/DH, but by other civil liberties groups that did not seem to grasp the significance or technical detail of the proposals - or who had other, more pressing priorities. 4) e.g. http://www.computerweekly.com/Articles/2006/07/11/216882/nhs- trust-uncovers-password-sharing-risk-to-patient.htm or http://www.computerweekly.com/Home/..%5CArticles/2007/01/30/221461/nhs- security-dilemma-as-smartcards-shared.htm Competing interests: Founder member of TheBigOptOut.org |
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Marlene Winfield, National Patient Lead NHS Connecting for Health, Vantage, 40 Aire Street, Leeds LS1 4HT
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Thanks Paul. I would just make a few points. The number of people downloading a form may be quite different from the number who take it further. I think your estimate may be quite generous. The independent evaluation in Early Adopters aims to identify who has been reached and not reached and if those reached feel they had all the information and advice they needed. Once the flag is set by a clinician to ‘do not share’ it will be honoured whatever process caused it to be set. Moreover, if the flag is ever changed by a clinician, as a safeguard the patient will be informed. Unlike now, people can see who has been looking at their record. And once they can access it themselves, they can see what is being shared. That is a significant improvement over the present situation when people have no idea and very little control. To say that we have not taken account of people’s concern for confidentiality is not remotely accurate. We have built in many more safeguards and choices than exist now, based on what patients told us they wanted and underpinned it all with a detailed Care Record Guarantee, largely drawn up by patients and citizens from a range of perspectives. The success of the NHS Care Record Service does not depend on 100% participation. You are advising people to take an important step that can have implications for their future health. You owe it to them to be accurate. Politics does not have to be about political parties. Competing interests: Author of the article |
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Phil Booth, National Coordinator NO2ID Campaign, Box 412, 19-21 Crawford Street, London W1H 1PJ
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Thanks for your points, Marlene. As people not only fill in their details but those of their GP to create a personalised copy, I think it's only fair to assume that most of those who go as far as to generate and download TBOO's online letter do so with the intention of taking it further. My estimate of 100,000+ takes into account that a proportion of people may not send their letter, but we can be certain that all those who generate a download have at least been made aware of the SCR. N.B. TBOO's hardcopy letter/leaflet that has been going into practices for some months now does specifically advise people to talk to their doctor if they have any questions. We both want people to be able to make an informed choice. I must ask - will all those "not reached" in the Early Adopter locations be given the opportunity to have their Summary Care Record deleted if they do not want to have one? There is, after all, a significant difference between not having your details uploaded at all and not having them shared in most circumstances. To be completely accurate, I did not say that you/CfH "have not taken account of people's concern for confidentiality" - rather that you may have underestimated the strength of feeling about it, and that your fundamental approach to consent is wrong if you wish to build trust. Persisting with implied consent when you do not even know how many people simply won't receive or read your letter denies each one of those patients a significant choice. And, in the light of the sorts of failings I referred to in my post above (see articles referred to in point 4), I fear the Care Record Guarantee may not be as watertight in practice as it it is on paper. I had been led to understand that the Care Records system *did* require high levels of participation but, if this is not the case, then why is CfH even using implied consent? Why not seek people's explicit consent as and when they visit their GP? If there's no imperative to suck people's records onto the system en masse at some point, an incremental approach such as this shouldn't pose a problem. The approach CfH is taking will (as I have also mentioned above, but you don't seem to acknowledge) negatively impact on patient health, as well as privacy. I can only assume that CfH has at least tried to quantify this. I agree that politics doesn't have to be about political parties, which is why I both highlighted NO2ID's lack of affiliation and alluded to the background of the current agenda. Centralising and sharing the sensitive personal information of tens of millions of people, many of whom have concerns, is a deeply political act. I don't doubt that you are involved in what you are doing for what you believe are the very best of reasons, including what you perceive to be the best interests of patients - especially those to whom you have spoken directly. I hope that from this exchange you understand that I and my colleagues at TBOO are doing exactly the same. Competing interests: Founder member of TheBigOptOut.org |
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