Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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![[Read Rapid Response]](/icons/misc/sectionDOWN.gif)
Vulnerable people have most to lose from on-line record access
- Brian H McKinstry (13 March 2007)
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And not National Records
- Roger Hayter (13 March 2007)
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My illness, my record, my right to access
- Brian H Fisher (13 March 2007)
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The UK lags behind other countries
- Angela Coulter (13 March 2007)
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Patient record access: a catalyst for improvement.
- Robert K. McKinley, Richard H. Baker (14 March 2007)
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Is society ready for Records Access?
- Amir S Hannan (14 March 2007)
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Record access
- Mark B Duman (14 March 2007)
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Re: The UK lags behind other countries
- susanne mccabe (15 March 2007)
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Do you want to know more about Records Access
- Amir S Hannan (24 March 2007)
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Brian H McKinstry, Senior Researcher community Health Sciences: Gp section, 20 W Richmond Street, Edinburgh, EH8 9DR UK
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Tessa Richards makes a strong plea for full access to personal records on-line. Although some of the advantages she cites are those of centralised access to health records by health care professionals, there are advantages, which personal access may provide, including potentially improving the accuracy of the records, enhancing the doctor-patient partnership and in the case of falling ill when travelling abroad. However, the main danger of such access is not too much information for the patient or a threat to medical hegemony, but rather to vulnerable people who may not be able to control access to the record. Dr. Richards hints that access to her children’s (and possibly her father’s record) would have been useful. However, at what age should access to the child’s record stop…..when she asks the doctor for her first prescription of the oral contraceptive pill? How will she explain to her mother why she doesn’t want her to see what the doctor said? Could a mildly cognitively impaired elderly parent prevent a well meaning, but somewhat overbearing, daughter or son scanning their record and possibly discovering their treatment for a sexually transmitted disease many years ago or a termination of pregnancy that had been long forgotten? Would an abused wife really be able to stop her husband accessing her record to find out her past history or what she may have said to the doctor about him the last time she was in? I am sure that Tessa Richards, and many well meaning people like her would not trample on vulnerable people’s rights in such a way, but there are plenty who will. For thousands of years patients have been secure in the knowledge that their doctors would vigorously defend their secrets regardless of who requested it and that they could safely tell them anything. For some people this is about to end. We have to be very sure that what we gain is worth this loss. Competing interests: None declared |
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Roger Hayter, Consultant in Care of the Elderly Bro Ddyfi Community Hospital, Machynlleth, SY20 8AD
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I would like to support all that Ms Richards says. The problems of third party information will be easier to avoid if we know we are sharing the record with the patient or guardian from the outset. In practice, people will avoid reading a record in the same circumstances that they currently ask for information to be shared with their relatives rather than with themselves. I believe the real concerns that my colleagues often express about sharing records with the patient are far outweighed by the advantages. Perhaps the biggest advantage of a patient held record - or, even better, a GP held record to which the patient has unconditional access - is that it makes the use of NHS numbers, the English information spine, and a national database of medical records quite unnecessary. At least, it makes this apparatus for uniquely identifying every person in the country quite unnecessary for their individual medical care. The likelihood of identification errors when the record is accessed by the patient or by the general practice (whose staff will know about local pitfalls in the identification of Mr Jones or Mr Singh) is much lower than the likelihood of errors in the national database. This only leaves research, commercial, billing or national security uses for the NHS number and health database, none of which in my opinion warrant the vast expense of its construction and support. Information security is also best served by keeping the information under the control of the patient. A national database is certain to be accessible to anyone with a reasonable amount of money to spend. I leave the detailed exposition to those more expert than I. Competing interests: None declared |
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Brian H Fisher, GP and Record Access Collaborative Lead Wells Park Practice, 1 Wells Park Rd SE26 6JQ
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The Record Access Collaborative is a world-wide group that examines and promotes patient record access. We are plesed that the BMJ has published an item on this subject. We see that this approach can transform current medical practice.
Record access can harness the record as a personalised tool for:
In the US, record access is widely available and is enthusiatically supported by patients, administrators and clinicians. We would like to see all patients being given the opportunity to have access to their full record, so long as simple safety procedures are in place. The Collaborative is working on guidelines for good practice that will make it as safe and easy as possible for practices and patients. The Collaborative is in close touch with NHS Connecting for Health. We also think that this approach should be highlighted to the Health Select Committee which is gathering evidence about the Electronic Patient Record at the moment. A 100 practice pilot is now being recruited to extend full online record access to more practices and learn more about the process of making records safely available. If practices would like to join, please contact brian.fisher403@ntlworld.com Further information on record access and worldwide contacts is available from www.icmcc.org Brian Fisher
Competing interests: I am a co-director of PAERS, a company that develops software that enables patients to see their electronic health record. I am also funded by EMIS as Lead of the Record Access Collaborative which promotes patient record access. |
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Angela Coulter, Chief Executive Picker Institute Europe, King's Mead House, Oxpens Road, Oxford, OX1 1RX, UK
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Tessa Richards is absolutely right - there are considerable benefits to be gained from encouraging patients to access their medical records, but British patients are currently getting a raw deal. Technically they have a right to access their records, but many are either unaware of this or feel too many barriers are placed in their way. Comparison of patients' reports from six countries [1] showed that the UK is performing least well, with only 28% saying they can access their medical records, compared to 34% in Canada, 40% in Australia, 45% in New Zealand and 51% in the USA. Demand for record access is high in all these countries. The majority of respondents to these random population surveys said they would like to have access to their records: 59% in the UK, 64% in New Zealand, 67% in Australia, 73% in Canada, and 75% in the USA. Record access for all patients who want it should be a key component of any strategy to support self-care and improve public health. Why is it taking so long to implement this policy? [1] Coulter A. Engaging patients in their healthcare. Oxford: Picker Institute Europe, 2006. http://www.pickereurope.org/Filestore/Downloads/Six-country-study-6-4-06- web-version.pdf Competing interests: None declared |
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Robert K. McKinley, Professor of Academic General Practice Keele University Medical School, Keele University, Staffordshire, ST5 5BG, Richard H. Baker
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Tessa Richards makes an eloquent case for patients having the opportunity to access their medical record; it is just, right and in the words of Tudor Hart, explicitly enables patients to be ‘co-producers of health’.(1) She also comments that the benefit of patients having access to their medical records is a ‘self evident truth’ in some health economies. Although the benefits may be enormous, there are potential harms and much will be written about the risks of such unfettered patient access to their records before this issue is laid to rest. Nevertheless, we must not lose sight of the potential of universal patient record access to fundamentally change the quality of consultations. We teach that the key step in any consultation is to reach a shared understanding of the problem with the patient;(2) expectations, hopes and fears are identified and what can and cannot be done explicitly discussed and acted on. In a series of educational assessments of the consultation skills of volunteer experienced UK general practitioners,(3) the most common recommendation for improvement concerned identification of the patient’s reasons for consulting (77% participants) and the fourth most common concerned collaborating with the patient in agreeing management plans (23% of participants, unpublished data) vividly demonstrating that achievement of shared understanding can be improved. When patients can assess the records we make of their consultations, the gap between their agendas and our actions will become very explicit and a powerful catalyst for us to improve our consulting skills. Universal patient record access will produce a paradigm shift in our relationships with our patients. We can embrace it or resist it but our world will never be the same again. Reference List (1) Tudor-Hart J. Feasible socialism: the National Health Service, past, present and future. 1994. London, Socialist Health Association. Ref Type: Pamphlet (2) Fraser A, Skelton J. Royal College of General Practitioners' Curriculum Statement 2: The general practice consultation. http://216 239 59 104/search?q=cache:EcjvvTNfF4gJ:www rcgp org uk/pdf/educ_curr2%2520The%2520GP%2520Consultation%2520Jan%252006 pdf+%22shared+understanding+of+the+problem%22+consultation&hl=en&ct=clnk&cd=6&gl=uk [ 2006 [cited 2007 Mar. 13]; (3) McKinley RK, Dean P, Farooqi A. Reactions of volunteer general practitioners to educational assessment of their consultation performance: a qualitative study. Education for Primary Care 2003; 14(3):293-301. Competing interests: None declared |
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Amir S Hannan, General Practitioner Thornley House Medical Centre, Hyde, Cheshire, SK14 1JY
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There is a fundamental change going on in society with patients moving from being passive recipients of care to active participants who wish to know more and be more involved. At the same time there is a plethora of information readily available via the newspapers, TV, the radio and of course the internet that offers the public information about a wide range of health topics. The challenge is whether the public is ready to be confronted by their own health record and what its implications may be. The fundamental question we now need to ask is whether "society is ready for the medical profession to be so open to allow everything to be seen by the patient if he or she so wishes?". The medical profession will need to meet this challenge as it develops a new partnership with patients to understand where if any the boundaries of such openness exist. I have over 150 patients accessing their complete GP held records over the internet. The numbers are small at the moment but they are growing at an exponential rate as more patients find out about it and tell others. The advent of the Summary Care Record via the Spine will further support this development enabling millions of people to benefit from it and is a welcome development whose time has come. Records Access changes the nature of the doctor-patient relationship, empowering both patient and clinician and improving the delivery of care. You can find out more about how I am promoting it within the practice by sending me an e-mail or going to Healthcare 2007 on 20th March in Harrogate where I am presenting with one of my patients, a local consultant psychiatrist and a health informatics manager "Trust me I'm a patient" Competing interests: Member of the Records Access Collaborative, Member of Clinical Leaders Network |
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Mark B Duman, Chair Patient Information Forum (PiF)
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Last October the Patient Information Forum (www.pifonline.org.uk) planned to run a workshop on this topic, entitled “Patient access to records”. Despite having leading speakers and practitioners on the programme (many of whom are mentioned above), and support from NHS Connecting for Health, we could not raise sufficient interest to run the event. At our annual conference last month, Dr Amir Hannan ran a break out session entitled “Record Access – really getting the message across”. 7 people attended his morning session. Yet when word got around at lunchtime about the impact that this could have, his afternoon session had 70 people cramming into a session planned for a maximum of 50. There is something about perception here. People don’t seem to know what ‘record access’ means, they give the topic cursory attention, they perhaps think of it as another ‘geeky’ IT project. The lack of Rapid Responses to this excellent article perhaps provides further proof? And yet when practitioner or patient catches a glimpse of what this could, and indeed in some places, does mean, there’s no stopping them… What more can we do – individually and collectively - to provide that insight? Competing interests: I am a member of the Record Access Collaborative |
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susanne mccabe, retired cf5 6su
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And paradoxically it is only minority groups who can even access this debate itself in the BMJ.Access to information needs to be inclusive in a genuine democracy primarily as a 'right' but also to get records right. There needs to be a much stronger committment to action by those who support rather than attempt to block access by whatever strategy. eg 'not in the interests of 'vulnerable' people - we can all become vulnerable at some stage, but health workers alone should not be making decisions 'in their interests'. Only those with access to information can make decisions so why is there no formal obligation to inform people in health settings by such things as standard forms to state opinions on file, give those who are excluded access to computers in health centres - computer access should be used to mutually empower all groups rather than be used as tools mainly designed to monitor others' lives.If claims to be practicing 'social medicine' are genuinely designed to be in the interests of all, a democracy needs health and other services which embrace the need for different relationships with individuals and communities - access to health records is one marker.That many are still too intimidated to ask for their records says much for how far the UK has to go. 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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It is apparent to me that there is a great deal of interest in patients being able to access their medical records. But there are genuine concerns about privacy, confidentiality, how useful this will be for patients or clinicians, how can the medical profession safely and responsibly enable patients to access their medical records in a world where the internet has enabled people to find out almost anything on the planet and beyond, what tools are there and what do we need to develop to help patients and clinicians get the most from any such advances, what about things that we should not be sharing - who decides what this is and how can we develop an appeals process and who should govern this, what special considerations should there be for the "hard to reach" groups in society so that we can ensure this benefits in society and not just the precious few, can we learn from other industries that have been through this process eg the financial sector, the commercial sector or perhaps from other parts of the world. My feeling is that these issues may need to be aired more formally at an "event" perhaps in Scotland (to show this is not just an English phenomenon!) or perhaps at the Primary Healthcare Specialist Group conference or perhaps even a Masterclass arranged by the BMJ Group or even the Cochrane group where we attempt to gather experts to discuss the issues at heart here! The previous respondee is quite right in saying that this discussion really needs to involve everybody in society but we have to start somewhere and this is as good as any! You can contact me on amir.hannan@nhs.net and let's see what we can do! Competing interests: Member of Records Access Collaborative, Member of Clinical Leaders Network |
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