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Demand online access to your medical records, says Richard Smith

18 Feb, 09 | by BMJ Group

Richard Smith I’ve just emailed my GP asking her to give me online access to my medical records. It was quite a palaver as I couldn’t find her email address, or the email address of the practice after searching on Google, and the practice doesn’t seem to have a website. Eventually I had to ring.

Why have I never done this before? I spend half my life online. Most of my work is done online. I shop, manage my finances, and do my taxes online. My web footprint is huge. So why have I never asked for access to the most intimate details about me that are kept on a computer about a mile from here? Well, it never occurred to me — just as it hasn’t occurred to virtually everybody in Britain and the entire audience at a Cambridge seminar I attended last night full of the digerati. It’s culture, stupid.

The audience was urged to contact their GPs and ask for online access to their records by Dr Amir Hannan, the GP successor to Harold Shipman in Hyde, Greater Manchester. His challenge was to rebuild trust in a practice where it had been totally destroyed. The day before he started there was a sit down protest in the surgery, and Shipman’s relatives came and took away all the computers.

Dr Hannan saw giving patients access to their records as an important step in building what he calls a “partnership of trust.” Some 600 (3%) of his patients now have access to their records online, and he believes that moving to “real time digital medicine” is transforming health care.

Patients can access all the information about them, make appointments, order repeat prescriptions, and access lots of information and decision support tools. The result is increased health literacy, better concordance, improved accuracy in the records, and a trusting adult to adult relationship that itself improves health. Those patients who have online access to their records can’t understand why everybody doesn’t do it.

With the EMIS system, which is used by 60% of GPs, it is easy, and cost free, to give patients access to their records. But only 40 practices in the country have done it so far—we are very much at the beginning of this revolution. Dr Hannan, a huge enthusiast, says that he has had no problems from the change, but interestingly most of the questions from the audience were about the downside of the change (security, confidentiality, etc) not the considerable upside.

The meeting also heard from Dr Mohammad Al-Ubaydli, a doctor and founder of Patients Know Best, who has studies personal health records at UCL’s Centre for Health Informatics and Multiprofessional Education.

A personal health record is one that the patient rather than the doctor controls, and this is surely where we must be headed. There is published evidence showing that personal health records can produce many benefits, are particularly valuable for patients with chronic conditions, and improve compliance and care. Interaction is better than simply access, and “coauthorship” between patients and doctors creates accuracy and concordance.

You can access both presentations at http://wiki.patientsknowbest.com/Patients_Know_Best/Lectures/2009.02.17_Using_Personal_Health_Records_in_the_NHS, and I urge you right now to ask your GP for online access to you records. Both you and she will benefit.

Competing interest: Richard Smith is an unpaid member of the board of Patients Know Best and a true believer that the web can ultimately transform health care as it is transforming so much else.

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  • David Berger

    Your GP must be DELIGHTED to have you as her patient. :-)

    Did you get online access to your record? My practice runs on Synergy and I don’t know if it’s even possible to give online access. I shall find out.

  • http://www.icmcc.org Lodewijk Bos

    June 1-3 ICMCC will organise an international conference on EHRs, also looking at patient aspects, at the University of Westminster.
    see: http://2009.icmcc.org.

  • Pauline Lansom

    I am a patient of Dr Hannan’s at Thornley Medical Centre in Hyde and a previous patient of Dr Shipman. Dr Hannah has restored my trust in doctors and having access to my records has been a huge contribution to this. I can check to see what has been written about any consultation with any of the doctors at the centre which serves two purposes to confirm what has been written is accurate and also inform me of anything that I may have forgotten. I have access also to letters that have been sent and received from hospital consultants. The online records enable me to order repeat prescriptions, book appointments, check appointments made, view my vaccination records etc. Being able to access my records wherever I am in the world is benificial to myself, and doctors who may need more information of any medical conditions and treatments that I may have.

  • Richard Thomas

    I’m one of the 3% in Dr Hannan’s surgery who chose to be able to access my medical recordds on-line. For me it was a no-brainer bacause:

    1. I can easily order a repeat prescription any time I want.
    2. I can make an appointment to see one of the GP’s when it suits me.
    3. I can view my medical history and access helpful links to other web sites that help me understand medical issues.

    Overall, it has helped me engage with the surgery and my own medial condition (high blood pressure) since I can easily check up on my condition and monitor its progress on-line and now that I’m more engadged, I actually visit my GP that I did in the past for routine check-ups.

    For me, it’s just my local GP doing what everyone else is doing (giving me web access to my own personal details so that I can be better informed – in the same way that my bank, and other on-line accounts do).

    Every GP should offer this service.

  • Ingrid Brindle

    I am a patient at Haughton Thornley surgeries and am a passionate advocate of online access for those who wish to participate. I have a chronic disease and feel a real partner in the management of my health. Whether I am at home or abroad I can monitor information and share it with any other health professional involved in my care. I would be lost without it now!

  • Harold Nuttall

    What a fabulous job Dr Hannan has done!! I have the on-line access to be a great help, although sometimes I find the detail to be a little scant. But for ordering repeat prescriptions and the like, it is really helpful.

    Once again . . . .well done !!

  • Ken Smart

    Reading the blog by Richard smith regarding online access to medical records. My wife and myself (being patients of Doctor Hannan) find it astounding that only 3% of the patients at “Haughton Thornley Medical Centre” have taken advantage of getting online access to their medical records when one considers the number of people with access to the Internet.

    When this great facility first became available we eagerly signed up because we felt that, what may seem a privilege to some, we felt should be regarded as every one’s right. After all it is our bodies we are concerned about and too long we have been left ignorant of the finer details of our medical condition and history.

    It was, and still is, commonplace at most surgeries to be told that it will be a week to ten days before the results of various test and X-rays are known but with online access it’s possible to find the results as soon as the surgery receives them (and sometimes before even your GP has time to contact you)

    The advantages of online access are too numerous to mention but we have found, to date, not one negative reason for having, what we consider, this wonderful service and would urge all patients inside and outside the practice to push for the right to be better informed regarding their personal health and well being.

    The various sources of information available on the EMIS website open up a vast array of information regarding diseases, medication and the reasons for their prescription, At one time we had only a vague knowledge of what our medication was for and what it’s effects (or side-effects) were. We can also find what and where new medical procedures and medications are available. In short, we can all be better informed about what is probably the most important thing in life – our health!

    I feel a great debt of thanks to Doctor Hannan and his team for pioneering this wonderful facility and earnestly hope that the trend for its adoption will soon be far more widespread.

    Please; don’t just ask for this facility. Demand it

  • http://nelh.blogspot.com Ben Toth

    I’d like my record to be online. So I wrote to the Market Surgery in Ledbury a few months ago asking for a copy of my record so that I could put it online. No reply yet.

  • http://www.patientsknowbest.com Dr. Mohammad Al-Ubaydli

    Thank you for writing this Richard and it was great to see you on Tuesday.

    I am collecting examples of great work on patient portals and personal health records done by other clinicians in the UK. This lecture includes some other efforts:

    http://wiki.patientsknowbest.com/Patients_Know_Best/Lectures/2009.01.07_Personal_Health_Records

    I would love to hear from anyone else who is doing such work – we want to document it for others to learn from – or from anyone who wants to begin – I would be happy to share the research I have from working with 2,700 hospitals in the USA. My e-mail address is mohammad@patientsknowbest.com.

  • Mike Shinks

    I’m an NHS Graduate Trainee in Health informatics. I’ve heard Amir talk on a number of occasions and also had the pleasure of meeting some of his patients who are benefiting from increased access to their own records.

    Unfortunately I think that one of the biggest stumbling blocks we face is the reluctance of a few (but vocal) clinicians of all disciplines to embrace the future.
    They site security (or their perceived lack of it ) as a showstopper and this has led to the new consent model that has been implemented as part of the SCR pilot. Patients are now asked if it is ok for us to upload a summary of their record to the spine and then if someone can view it.

    This strikes me as ridiculous.

    In the paper based system we don’t ask a patient’s permission if we can write down their Blood Pressure recording, nor do we ask them, while they are in A+E, if it’s ok for us to have a look at their notes, because information in there may help us save their life.
    So what is the difference for electronic based Health Records.

    If anything the situation is improved. NHS workers have to vetted before they are allowed to look at electronic notes and there is a full audit trail who as looked at what.
    This is much better than when I was a nurse and Clinicians used to idly flick through any notes that were lying around, just for something to do!

    Also, if a clinician does look at an Electronic Record without having a legitimate interest, than apart from the possible embarrassment of someone knowing something they shouldn’t know, what exactly do we think they are going to do with the information – blackmail us?

    We should be much more concerned with illegitimate access to our financial information and the increasing amount of personal information that we leave lying around the web.

  • Miranda Visser

    I am another patient of Dr Hannan that chose to have access to personal medical records. Mainly at first to order repeat prescriptions online plus having a small look on my own record. Now I know I can make new appointments by choosing the time and date that is best for me and without being rushed in a phone call.

    I am from Holland and only moved to the UK just over a year ago. I realize now being diagnosed with high blood pressure after the ‘New patient consultation’, I don’t know anything about my old medical records other than the things I remember. But no details like in what year I had my last blood pressure taken and what the results were. So I don’t know how long I could have been walking round with high blood pressure.

    Btw when I first visited the surgery I expected them to ask who my previous doctor was and details to retrieve my medical history but they didn’t do that me being from Holland. (This was just before the start of the online medical records)

    How I see it in a bigger picture, there is still a taboo hanging round asking your doctor for your personal health records. The doctor always was the respected man in the community that guarded your health and he knew best. Today we watch doctors on reality tv and look on the internet first to find information of any itches and bumps we have and if it seems serious enough we’d consider to make an appointment to see a doctor to check if it’s really what we think we are suffering from. But what didn’t change, a health record is made by your doctor and is kept by your doctor until you move house and move outside your doctor’s area and he or she sends is to your new doctor. And what’s in it… no idea. As a kid I felt I had a big label hanging on mine. I had a period I was struggling and feeling ill and my doctor couldn’t find any reason I felt that way. I remember something like ‘it must be psychological’ and I got sent home and that was it.

    This online access to medical records might be just the first step to something bigger. After people get more into it I think they’ll ask for more. An ‘ask your doctor’ feature maybe where you can ask or talk about any small issue you’d have and he’d give you an answer or ask you to make an appointment. Or a more central system where everything is being stored about your health and the patient as the owner of that database can decide who has access to what (in a controlled way of course only concerning the information that could benefit in certain ways, but thinking here about your dentist, dietist, optician, psychologist, psychotherapist etcetera) and even add things like how much you sport and what your diet is like for instance if you like to lose some weight. A record you own and control of your life to live healthier and happier. There will be lots of issues to sort before that could be but having the option to view your medical history is an option every practise should offer to their patients.

  • Judith McDonough

    I am a patient of Doctor Hannan and have online access to my medical records. I have read with interest Richard Smith’s blog, particularly his observation that the nature of questions posed by Dr Hannan’s audience were largely of a negative nature. This appears to me to be a common theme, ie health professionals and computer experts looking at the issue of patient online access to their medical records as being problematic. Do these professionals and experts not believe what we patients, who are actually in receipt of the service, keep saying??? Online access to medical records is as secure as online banking, shopping etc, it is convenient, it must be cost effective to the health service, it is educative, it engenders trust and most importantly it EMPOWERS US! Dr Hannan is a pioneer and I can’t express how fortunate I feel to be one of his patients.

  • John Shepley

    I like many of your replies am a patient of D. Hannan and ex-patient of Shipman. I have done some work with Dr Hannan and some with my son who was a patient. Apart from what has already been written we have found that most patients don’t know about the facility. Advertising is urgently needed. Not all, in fact not many clinicians that we have approached want the change. I get the feeling that they don’t agree with the idea of accountability and that doctor knows best.

  • Niels Rossen

    Hello,

    I am a GP in training in the Netherlands. Promoting patiënt’s access to electronic information is at this very moment the focus for debate in the Netherlands. The minister of health is in the proces of creating a nation wide electronic database of health-records, to be used by doctors in medical emergencies. The implementation will not be facultative: doctors (general practitioners in particular) will have an obligation to participate.
    The difference with your suggestion is that the Dutch proposal will not (yet) give access to the full database the general practitioners have possession off, and that it is a system intended to provide doctors with information, patients will get access to their databases only as a side-effect. The most important point of discussion in the Netherlands is the safety issue: will the technique be adequate and will patient-information be safe from hackers? And by whom will it be accessed or (mis)used? (Preferably not by insurance companies?) Because of the importance of trust with this issue, legislation is prepared to make misuse punishable with harsh sentences. Also, it is feared that information will not be up to date (especially medication records) which could lead to dangerous situations when used for medical decision making. Another point of debate is who will be responsible for the content? Doctors fear that if patients are allowed to change their own records, vital information will be withheld, for example with psychiatric histories. These kind of fears have led to approximately 2% of patients that have witheld consent to have their information electronically accessible. (Note that they protested before any kind of system is implemented!)
    In all, I think the debate in the Netherlands leads to the conclusion that patient access to electronic information might be very positive and powerfull, but there are many risks involved when that system is nation-wide and that could do more harm than good could come from it. Implementation should therefore in my opinion be done with extreme caution.

    Greetings

  • http://www.patientsknowbest.com Mohammad Al-Ubaydli

    Re: Mike Shinks

    What you are describing is very different from what Amir is doing. He is providing patients with access to their clinical records because this is convenient for the patients and because each patient has consented to this process.

    The Summary Care Record is for the convenience of clinicians working together and you are asking for patients not to be consented for this process.

    Nor is what you are describing like the existing paper method. It is not the case that all NHS clinicians around the country can simultaneously access the paper records of a single patient. Instead, if a clinician from London wanted to access the paper records of a patient in Manchester this would happen when the patient asked their Manchester clinician to transfer the paper records over, or if an emergency prompted a Manchester clinician to transfer the records in the interests of the patient. There are clear checks and balances in place.

    I say all of this as a patient who would be happy for my records to shared with the SCR. But with technology, just because we can, does not mean we should, and just because you and I are happy with the technology, does not mean everyone else is happy, or that we should act as though they were.

  • paul phillips

    i am a patient of dr hann

  • paul phillips

    i am a patient of dr hannan i find the online medical records a great way of keeping yourself upto date with your health .I also find it good to book my own appointments and order my repeat perscriptions.You can also see letters from the hospital or any other dr before they arrive by post .The negative side to it is there is none.

  • http://yahoo.co.uk sheila caldecott

    My teenage son and myself both have on line access to our records. The teens seem to do everything on line these days and I have also noticed more and more official bodies such and the police, firebrigade, nhs health promotion, ambulance and youth employment are all using texting, e-mail and on line sites to get messages accross to young people. Its very much what the next generations will be expecting form health care. My son also uses the site which is accredited to get accurate health information for himself and for homework information. Parents should be aware that their are many other health sites available to their children but many are bias in what informaton they give and many are purely selling something. Internet access for patients to their medical records and the health confidence it gives is a partnership between patient and doctor, it encourages us to ask questions and also to look on site and find things out for ourselves. It works and works well, its time for doctors to start trusting patients.

  • Dr Brian Fisher

    I am a GP in SE London and I’ve been sharing records with patients for over 25 years, both on paper and electronically. I’ve worked with others to do research in the field and am reasonably up to date with the literature on the topic. I’m also director of the company that has made possible the sharing that contributors have described here .

    The literature shows that:
    - record sharing is safe
    - it improves relationships
    - patients use it intelligently: to save their time and doctors’ time, to make the system safer and more efficient
    - it does not increase litigation
    - it appears to improve outcomes with less use of health services
    - it helps patients feel more in control of their health and their care

    Full record access needs to be widely available and is designed to support both practices and patients.

    Once in place and integrated into routine care, no-one wants to return to the old days – neither patients nor clinicians

  • Richard Smith

    It’s not often that you hear so many patient voices in the BMJ, and the message–that patients like having online access to their records–is very clear.

    As I tried to emphasise in my blog, it’s extraordinary not only that most of us don’t have online access to our records but also that we’ve never thought about it. My prediction is that in five years it will be unusual not to have access. The revolution has started, and the patients who have commented on the blog are in the vanguard.

    I haven’t yet heard from my GP.

  • Jan Curchin

    I’m a patient who has access to my medical records (Dr Brian Fisher being my GP) and I think it is a brilliant idea and should be made compulsory for all practices to move in this direction. I am so enthusiastic about it that I go out with Dr Fisher to promote this to other doctors and once they have been given the presentation which is from both a doctor’s and a patient’s point of view, few are left with any doubts about the benefits that can be derived from the practice.

    Being able to look at my record at any time at home, having the ability to show it to other doctors if I am referred for treatment in hospital, making appointments online, being able to order repeat medications online, and being able to check results of tests or read letters about my treatment all in one place is absolutely brilliant. The fact that I can also get further information about tests or diagnoses from reputable sources also allows me to be actively involved in my health care.

    Doctors have always been very protective of information relating to our medical wellbeing in the past, but we are being actively encouraged to engage in maintaining a healthy lifestyle and in managing any long-term conditions that we may have, and access to ones own medical records makes this possible. We have the right to see them, so doctors should accept the evidence that it is a good thing and do all that they can to help bring it about.

  • http://www.interactivhealth.com Glen Griffiths

    ‘Just because we can – doesn’t mean we should’

    Re: Mike Shinks’ earlier point picked up by Mohammad

    I too share Mohammad’s view and I believe it is very important to make the clear distinction between the form of record access that is being offered to patients by Dr Hannan and Haughton Thornley Medical Centres (and elsewhere in the UK) and the roll-out of the NHS national programme in the form of the Summary Care Record which Mike refers to and what also appears to being proposed in Holland.

    As an illustration, there are some GPs today who are actively promoting this ‘direct to patient’ access approach (I know of one for certain) and yet actively canvas against uploading patient details to the NHS spine for fear of issues around privacy and confidentiality – why is this so? we need to understand this better.

    Dr Hannan has built his own approach to patient record access upon what he describes as the ‘Partnership of Trust’ and it is clear from the responses to this blog so far that that is evidently the case. It seems therefore that it is not just down to the ‘flicking of a switch’ that Richard is asking of his GP but a total change in approach to allow patients to share more actively in their treatment – maybe this is why you haven’t received a response so far Richard

    It’s a wide chasm to cross but it appears from experience of those who have made the jump so far that it’s safe on the other side!

    From my own perspective, I am encouraging my own Practice to consider offering my family direct access to our records and once I have seen positive evidence from the summary care record early adopter sites and have total assurance over the scope to which my records will be extended, (how detailed will they be and who will have access?), as well as seeing the extent to which they might be shared across other areas of government over time (see coroners and justice bill issues for that) and those assurances are enshrined in the NHS constitution, I am likely to encourage my family to opt-in (or not opt-out) of uploading our records. I am already totally confident about the Privacy, confidentiality and consent around ‘direct to patient’ access.

    Declaration of interest – I have collaborated with Dr Hannan over the last 18 months to develop the Practice patient portal http://www.htmc.co.uk

  • Maureen Rhoades

    I am a patient of Haughton Thornley
    Medical Centres and find that having instant access to my medical record, repeat prescriptions and the making of appointments is a very convenient service.

  • Vanessa Mullings

    I too am a patient of Dr Hannans and cannot congratulte him enough for the attempts he has made to build on the trust requisite between Doctor and patient. Access to my personal records is an excellent benefit both to myself and other medical specialists who I need to see on a regular basis – in fact information/test results I have obtained from my records have actually helped other consultants with their diagnosis and subsequent treatment.

    A long term kidney problem for which I had been passed from pillar to post, having been hospitalised for on a number of occasions under the differing care of urology, rheumatology and neurology is almost at the point of being finally diagnosed (by the renal department!!) I firmly believe that if I had not been able to have access to, and subsequently pass on, all these facts and results of various tests when seeing the different Doctors, my condition and the debilitating affect it has had on my life for the past two years, would still be ongoing. I have in effect been able to have some contol over my illness rather then allowing it to control me – a very very important thing when dealing with long term illness/pain.

    With regards to security I can fully endorse some of the comments made above. I too use the internet for shopping, booking holidays, banking and as a never ending source of knowledge – why would I not want access to the information that relates directly to my health or not want to use a tool that makes planning appointments, arranging repeat prescriptions etc much easier and more convenient?

    In conclusion, access to my medical records has been a wholly positive experience and I would recommend everyone takes advantage of this opportunity.

  • Dr Brian Fisher

    Dear Dr Niels Rossen,

    I understand your concerns. There are ways of meeting most, if not all, of them.

    1. A central database is probably less secure than a distributed database design. Amir’s and my patients use a system that is not held centrally. The safest arrangement in our view is that the patient shoudl hold te key. Even so, with careful control on who can access the system , a central databse shoudl be very safe.

    2. If the patient has access to the GP record in real-time, the data cannot be out of date in relation to that record. I agree that any other arraangement that introduced delay woudl carry risks of inaccuracy. And, of course, the GP record does nto always tie up well with the hospital one.

    3. The law in the UK is pretty clear about who is responsible for the content of the record.

    4. We intend to design soon into our system the ability for patients to add to the record. That would include things like their Peak Flow, their BP, Living Wills etc. We think that any added data, before it went into the record, would need to go into a holding area until the GP had seen it and decided how to respond.

    In conclusion, poor design may increase risks. Design of the system must be done with the collaboration of both GPs and patients.

    Brian Fisher

  • bill white

    My wife and i are patients at the Haughton Vale practice run by Dr Hannan and his partners and we have both used the online system to view our records and check results etc we also use it to book appointments, you can use it to see when a preferred Doctor is available.
    in my view it is a system that should be available to everyone.

  • Jim Dickinson

    The idea sounds good. There should be little in records that cannot be shared with patients, though there may be a few boundary issues to sort out. What happens to the 14 year old girl who does not want her parents to see the records of her contraceptive? What about the bipolar person who disagrees with the diagnosis?
    While there seem to be some time savings such as repeat prescriptions, how much extra work is created by doctors having to respond to the patients queries? When doctors are busy already, how much pressure is created by this process?
    How secure can records be? The more wide open they are the more likely they are to be abused. Password protection is illusory, since the vast majority of people do not use secure passwords, nor change them regularly.

  • Neil D Harrop

    I am a patient of Dr. Hannan’s and recently sustained an injury which required several hospital appointments under 2 consultants at 2 hospitals. Being able to access my medical records and letters of referral was an enormous help. Allowing me to track my progress through the health system without troubling the surgery.

  • Yvonne Bennett

    As a patient of Dr Hannan I am very pleased to access to my medical records. I am an expert patient and even have a certificate telling me so (I attended an ‘Expert Patient’ program for people to manage their long term conditions). It’s not only the ordering prescriptions, booking appointments & checking results that makes life so much easier but also being able to MANAGE MY OWN health WITH a support team in the Practice and using my HealthSpace account to keep me organised.

    On a recent (unavoidable) visit to the ‘out of hours service’ I was able to take with me details of a previous bout of the same condition which also showed the medication I was given. The doctor was very happy to look at this and felt confident in prescribing the needed antibiotics, a confidence he hadn’t experienced before. (With no access to patient’s records, these doctors can only rely on what the patient tells them especially as regards to allergies to medications)

    After a recent fracture I was seen by an Osteoporosis Specialist Nurse in the Fracture Clinic. I was able to take copies of a previous Dexa Scan result (taken at a different hosiptal) which was extremely useful to the nurse. Having previous results can be cost effective as well as time saving and often saves duplicate tests.

    This list goes on and so do the benefits. My husband also has access to his records and accessing his blood results was much better than taking several hours off work to find test results were normal.

    As with all internet transactions we are aware of security issues and take steps to protect or security. (Patients aren’t stupid as many healthcare professionals believe). An emergency visit to hospital means we are more interested in our health and those treating us to be aware of our medical history when appropriate. Passwords can be changed at anytime 24×7!

  • Jim Page

    This must be a more sensible answer to the IT problems of the NHS than the massively expensive and impossible attempt to have a national interconnected data system. I have long felt that a smart card could hold all the medical (and other – dental, optical, alternative health etc) data that a patient wished to have available to other health workers and would be as simple to use and as safe as a bank card. We know that these are not 100% safe but neither will a centralised system and I can’t think that a stolen health record card will be as much interest to a thief as the patient’s bank card. Now that the internet is so ubiquitous there is probably no need for a smart card but the principle is the same – let the patient be in control of their own health data. If there really is information that the professional does not want the patient to see how about a paper record kept in the safe?

  • Roger Hawcroft

    “…just because we can, does not mean we should, and just because you and I are happy with the technology, does not mean everyone else is happy, or that we should act as though they were.” Mohammad Al-Ubaydli

    Mohammad Al-Ubaydli’s comment is probably the most rational and considered of those made in this discussion so far – and we would do well to note the caution implicit in it.

    I agree whole-heartedly that trust between clinician and patient is an essential component of successful health service and that access to appropriate information is a key to building that trust. I also believe that a patient should have the right to access their own records.

    However, I am dismayed that genuine caution is so cursorily dismissed by so many. Of course, hard copy records can be abused but there is a massive difference in vulnerability between a single copy of a record secured in a single location and that same record undergoing transmission in a digital format, perhaps over thousands of miles and through several countries, on a relatively uncontrolled network not only open to attack but *known* to be the regular subject of such.

    Neither should questions of privacy be dismissed lightly – it is not an accident that ‘patient confidentiality’ has force at law nor very hard to find examples of how disastrous its abuse can be.

    In a world that is ever more litigious, and in a field that becomes ever more technical and specialised, I would also have concern about the strong possibility of unnecessary anxiety that could arise from a patient’s misinterpretation or misunderstanding of the content of a record.

    These are just some reasons to take a cautionary approach to this sort of venture. There are many more. But lastly, and in echo of the quote with which I began these comments: just because there is a seemingly accelerating and mindless haste to put anything and everything on line, doesn’t mean that that makes the doing of it a good thing.

    roger

  • http://www.renalpatientview.org Cherry Bartlett

    Primary care records are not the only ones that can be made available online.

    RenalPatient View is a website where patients across the UK can access their Hospital based renal records online. The records include laboratory results, drugs, patient correspondence and the patient’s status on the UK Transplant waiting list. Some links are available to other websites tailored to the patient’s primary diagnosis and there are links to explanations such as the meaning of particular lab tests. There are currently around 10000 patients registered with the website and the majority of UK renal centres are able to offer it to their patients.

    I conducted an evaluation of the site in 2006 in the five renal centres that were piloting it. Overwhelmingly patients were enthusiastic about it and greatly valued having access to the records. Comments such as “..I now feel that the results belong to me” and ” … I feel much more relaxed about my transplant when I know the results from my clinic appointment so quickly …” were common in the survey. Some reported pleasure in being able to share their access with family at home or overseas. Few were concerned about the security of their records once they had used the site and less than 10% of users wholly agreed with the statement “I read things that worry me”.

    A survey of renal staff in 2008 also found enthusiasm for the website and although it did sometimes result in additional queries from patients this was viewed positively as providing an opportunity to discuss important issues.

  • Peter Ward

    I’m a GP working in a deprived inner city area. We have few internet users, alot of health problems, plenty of asylum seekers, drug addicts, alcoholics and people with mental illness. I think while 24hour internet access to records would be nice it would cause problems. The alcoholic who disguises her alcohol drinking and doesn’t admit to it (but I can smell it under her minty breath). I and my colleagues record our suspicions. I wonder if we would if she could look up what we’d written so easily on the net? the methadone patient, who we suspect of using heroin still. Would we put down our concerns they are deceiving us? The Type 2 diabetic who tells us he always takes his tabs, but we know isn’t. Would we code ‘poor concordance’?

    Maybe these examples are not enough to stall internet access. But another thing concerns me. Internet access is not free (even with EMIS). It comes with several hidden costs: the opportunity cost of investing in this for the worried well when we could do with the resources to reach our properly ill patients, the admin effort of setting it up, the answering of queries that arise from it at the expense of people who belive they deserve our time because they think they might be ill.

    Why not charge for it. £20 a year say and use the cash to invest in health interventions that really improve health.

  • peter mahaffey

    Dr Smith agitates for patients to see and be involved in their records. He doesn’t provide any hard,controlled evidence of the benefits and one wonders what his motives really are. It just doesn’t make common sense for patients to be perusing every detail of their notes. By all means give them the rights, indeed they already properly have those rights, but to suggest for example that the chronically sick, often with reams of files, might be able to correct the thousands of entries, or somehow improve their healthcare by doing so, is pure fantasy. What a shame Dr Smith hasn’t had a few years at the coal-face dealing with the files of the chronically ill as they arrive in the consultation room, or WORSE, trying to grapple with those records on-line. And does he ask his garage to see the service records of his car so that the care is somehow improved? I doubt it.

    There’s something alien to the human eye to work from a screen, which is why on-line newspapers are not really taking off, and why people on trains who own computers still prefer the feel of a grubby paperback. “The web will transform healthcare”? Forget it. Good doctors, properly and intensively trained is what we need!

  • http://www.interactivhealth.com Glen Griffiths

    In response to Roger’s reply about his concerns that privacy may not be being taken seriously enough, readers may be interested in this page from the Haughton Thornley patient portal which goes into this in some detail.

    Getting the most from online services – keeping your information safe see – http://tiny.cc/raconsent

    I can certainly vouch for the attention that Dr Hannan and his Partners have applied to this.

    It’s also good to hear that over 10,000 renal patients have the opportunity to engage in their own health care through Renal PatientView – that has been rolled out over a number of years with massive clinical and patiemt involvement and with these numbers looks now to be well bedded down.

  • Dr Brian Fisher

    In reply to both Peters – Ward and Mahaffey:

    There is an issue about recording these rather private thoughts. They also extend to speculative diagnoses: making a note that a patient might have a cancer, for instance. As a GP who has shared notes with patients for 25 years, I can reassure you that this can be done safely. Indeed, the medical defence societies are clear that not only do we have a duty to record these thoughts, but the patient has a right to read them – as the law stands now. Record access does put pressure on us to be more honest than we may have been before.. I guess it is generally helpful to share one’s concerns that a patient may not be complying with their medication.

    Charging is an interesting idea – charge who?

    As I mentioned a (long) way above in this conversation, there is evidence about the impact of record access on patients and health services. The research comes from both the US and the UK and shows that record access is safe and generally helpful. The literature shows that:
    - record sharing is safe
    - it improves relationships
    - patients use it intelligently: to save their time and doctors’ time, to make the system safer and more efficient
    - it does not increase litigation
    - it appears to improve outcomes with less use of health services
    - it helps patients feel more in control of their health and their care

    I hope that is reassuring.

    Brian Fisher

  • Pamela Turner

    I am a patient of Dr Hannan and being able to access my medical records and order repeat prescriptions making appointments on line is very worthwhile its so easy and I totally appreciate the work Dr Hannan as put in to get this service up and running.

  • Raj Gulati

    I am a fellow GP in Tameside where Dr Hannan’ practice is. I echo all of the patients’ comments. What patient’s accessing their notes promotes an appropriate adult-adult consultation. I feel he should be awarded for this pioneering work.

  • http://www.implementhit.com EMR Medical

    The growing demand by patients, government entities and private sector companies over the last several years is driving demand for Electronic Medical Record (EMR) systems. The complexity of information technology in general, combined with the additional intricacies of a patient’s interaction with the healthcare system, provides for significant challenges in effective integration and adoption of EMR systems.

  • Lamin

    recently i try to access my medical records from my GP but was charged £40.00 for having it on paper.

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