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At the heart of general practice since 1960

How we offer patients access to their records

Dr Amir Hannan explains how his practice ensures patients understand issues of consent and confidentiality

According to the new GP contract for 2015, everybody should be able to view the coded information in their GP record by next April. Some practices, including ours, are already doing this and more.

But we need to ensure that, when we share information, we comply with the ‘no decision about me without me’ principle while minimising the risk of harm as per the Data Protection Act.

What we did

In 2006 my practice started to offer patients access to their full electronic health records. We developed a three-stage process to secure we obtained explicit consent from patients.1

First, patients collect a PIN from reception that activates their account and allows them to register online.

Second, patients complete an online or paper questionnaire to demonstrate understanding of the issues. It takes between one to two minutes. Thequestionnaire was developed with patients and has been fine-tuned to make it easy to administer. Carers or family members can complete it on behalf of the patient if necessary. If the patient raises issues that make you question their capacity to have access to their records, we either discuss the issue, or explain why we would discourage them.

Once completed, the patient’s record is checked by the practice to ensure it is safe to share. Only then is personal access switched on, a code added to the record and an email sent to the patient to confirm acceptance.

Third, practice staff and clinicians are given support material so that whenever patients contact the practice, they can be encouraged to sign up for access to their records.

Results

We now have eight years’ experience of sharing records with patients safely. More than 3,600 patients have completed this process without a problem. The record is available for the patient to check and share with whom they like, whenever they like and confirm its accuracy. According to a study we did with another surgery in 2012, we saved around one appointment and more than three phone consultations per patient per year by offering patients access to their own records and the health information on our website.

A number of local practices are now following this procedure, which has been shared with national organisations including the RCGP, the National Information Governance Board, the GMC, Medical Protection Society, the Primary Healthcare Specialist Group, EMIS and SystmOne National User Groups.

Dr Amir Hannan is a GP in Hyde, Greater Manchester, and lead for long-term conditions, IT and patient engagement for NHS Tameside & Glossop CCG

Reference

Further information. www.htmc.co.uk/GetAccessNow

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Readers' comments (8)

  • great, this is the how to guide.
    This is a great example of how to do this. patients that get this care are going to be the future. Then if you combine records access with records understanding, you automatically build safety and quality into the system. patients will help us and also help themselves.
    Thank you pulse for putting the questionaire on the website. really useful.

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  • Thanks for the vote of confidence. Now please share this with all you know throughout the world. This is the paradigm shift in healthcare where we build confidence and trust together by journeying with those whom we serve and share each other's knowledge and experience together. We have gained massive confidence by using this process of continuous improvement. Please contact me if you would like start offering patients access and understanding safely too using your own resources. Let's join together and build the future together! amir.hannan@nhs.net or @amirhannan

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  • I wish more GPs were like you Amir. Keep up the good work!!

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  • Thankyou. For anybody wondering how we actually administer the questionnaire and what other information we provide to help patients understand the issues relating to giving patients access to records and understanding please see

    www.htmc.co.uk/GetAccessNow

    Our whole explicit consent process is available online for you to see

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  • Dr David Barrett

    My hands are up ... I was a convert initially and the practice I worked at back then started using this system from 2007 until I left in 2013. I heard many of your talks at various conferences, dazzled , I was a groupie. I still respect all this work, effort and the aims intended. I write this carefully.

    This is now the worse possible time to have enormous amounts of work foisted upon on us. Mark my words "this will be a disaster right now, will tip us over the edge" (if we're not there already ) and The Daily Mail will have a field day. I was full of energy, the vigours of youth so I found time driving this forwards past all the hurdles back then. There is no slack in the system to roll this out nationally right now. It may well triple our Indemnity insurance in an instance as we will be unearthing all manner of incorrect until proven otherwise, misunderstood or irrelevant info. They will be test cases for damages to feelings, practice managers will drown in this work; direct complaint emails to the gmc about recording info a patient told us not to and such like. Use your imagination.

    I spent an hour a day checking notes for 3rd party data or other harmful info. Frankly in some cases I felt I was not helping a patient for them to, for example check their CXR showing a "shadow" at 2am.

    Even showing only coded info in the summary most complaints and queries came as follows eg:

    "I had my hysterectomy in 1963 not 1971"
    "I've made an appt doc because you said I was "born by Caesarian section", I was a normal birth but I did "deliver by c-section" 3 years ago"
    "My basophils and eosinophils counts is zero, do I have leukaemia?"
    Email from patient: "all my operations are coded as done in 1897" reply "yes it's a known technical fault unfixed for the last 3 yrs, thanks for pointing that out"
    "I've made an appt to see you as my father/mum/boyfriend was looking over my shoulder when I was checking my notes. They saw I'd had 3x TOPs and Chlamydia when I was 15. I'm in deep trouble now...."
    "My ESR is 45 and you marked it as normal "
    "I don't understand it, can I have a translation ...also Into Polish/ Arabic (any language) etc

    Not to mention those who will be harassed by significant others to reveal their easily accessible medical information on an iPad in the living room. There are serious risks to vulnerable adults here.

    In a small pond this was and is a laudable experiment. Problem will become a very serious one in April 2015...it will not scale up. I want it to but it won't. Dave.

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  • A big part of this may be the drive from certain parts of pharma.

    I know there are sections in the industry who think this may be a cheaper way to access data and there are plans already to start a variety of screening tests based on risks. the business model is pretty weak but this will help.

    By the way if it goes national you will be spending a significant amount of time dealing with this work

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  • Chris Kenyon

    I am full of respect and admiration for Amir Hannan's work. He is motivated I'm sure by a personal belief in sharing and transparency, something that was imperative given the notorius crimes of his predecessor - so why have I not implemented the same yet? David Barrett hits the nail on the head here - we interpret and live with uncertainty on behalf of our patients, we know which numbers matter and which don't, we know that results are only useful in the context of the bigger clinical picture. As for coding errors by various colleagues (professional and non-professional) we correct those when we can, but there aren't enough hours in the day. Many years ago I asked a patient when his migraine started:- "oh as a child" so I coded it as starting in 1952. This week, in response to his super useful care plan he complained to another partner "I never had a migraine in 1952" - talk about wood & trees!! How on earth can we advance transparency without fuelling obsession and neuroticism? Any ideas out there?

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  • "How on earth can we advance transparency without fuelling obsession and neuroticism? Any ideas out there?"

    Paternalism par excellence. As an insulin-dependent diabetic, the only person who knows how much insulin I've taken in any given month is me. Therefore, the only person who can really interpret the "numbers" and work out their importance is me.

    It may be a lot of work to prepare notes for patients, but that doesn't mean the work shouldn't be done.

    Other countries successfully run systems where patients hold their own notes and the patients in those countries apparently cope just fine.

    If anything, it would seem that UK docs favour a lack of transparency in order to infantilise their patients, thereby maintaining the doctor's own "status".

    Ask yourselves this - if you're in hospital or have a chronic disease, would you rather be kept in the dark and unaware of your own "numbers"? If not why do you expect the same from your patients?

    UK doctors like to moan in the press about how patients don't take responsibility for themselves yet these same doctors will do everything in their power to prevent patients from having the information they need to take responsibility for themselves. You can't have it both ways.

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