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A faulty production line

It’s time to hand over the keys to the GP record

Dr Jonathan Inglesfield argues GPs need to be more willing to share patient data

It’s not easy to change the habit of a professional lifetime. 

Confidentiality has been embedded in us since medical school and consolidated through years of clinical practice. The computerised clinical record is the physical manifestation of this confidentiality. Unsurprisingly we are reluctant to risk betraying the trust of our patients. We keep the data control keys well-guarded in our surgeries.

The problem is that we can’t carry on like this. We need to change and accept the need to share access. If we don’t, not only will patients have more fragmented care but our lives as clinicians will be harder.

Growing GP practice sizes, the loss of 24-hour responsibility and the proliferation of allied health professionals all push towards more fragmented care. Walk-in centres, minor injury and accident and emergency units have their part to play. Specialist referrals are now commonplace - it is not unusual to make several during a morning surgery.

Do we ask the question, ‘Are we sharing enough?’ as often as we ask the question, ‘Am I allowed to share?’

The longitudinal primary care record remains the definitive description of the patient’s health journey. Through this bird’s-eye view we observe our patients as they flow through healthcare settings. We know when they receive appropriate or inappropriate care. We can see when they have an arguably unnecessary scan or a tertiary referral of dubious benefit. We stop the newly recommended drug that we know the patient failed to tolerate six months ago because our GP record reminds us.

As data controllers, GPs are able to enter into information sharing agreements with providers who are able, at speed and with moderate cost, to place primary-care systems within their own facilities. Locally we now have an EMIS terminal within our acute hospital accident and emergency department capable of viewing the entire primary care record of 20 of our 21 practices. The power of this tool in a hospital setting is immense – for the first time hospital clinicians offering emergency care are privy to the longitudinal view of the patient journey. Episodic care starts to become longitudinal.

There is another reason for sharing data. Consider this - you come across a foreign holiday and wish to invite a friend. Do you take note of the details, write them down, post them to your friend and ask them to meet with you in a few weeks, following which you ask them to write back with the response? That is the equivalent of how we seek clinical advice. We now have the ability to manage our patients in real-time with specialist colleagues, simply done with a GP terminal within the hospital and an electronic request for advice. No need for the patient to travel. No need for lengthy letters.

The 2013 Caldicott Review requires GPs as data controllers to place equal emphasis on the duty of sharing and the duty of confidentiality. Do we ask the question, ‘Are we sharing enough?’ as often as we ask the question, ‘Am I allowed to share?’

Of course safeguards are needed - robust data sharing agreements, a well-publicised fair processing notice and audits to ensure appropriate access. All this can be put in place quickly. We also need to refine how and what we record. Highly personal details of lives may become increasingly inappropriate in the record, but that applies as much to sharing within a large group practice as it does between healthcare providers. Such details once recorded can rarely be kept secret between an individual clinician and the patient, our patients move between practices and complete data subject access requests. Medicolegal issues apart, the record should refer to detailed intimacies by theme with the trusted lifelong GP remembering the rest.

We need to see the default position as a requirement to share, balanced with assurance around safeguards, rather than one of declining to share because of confidentiality concerns. If we don’t share our patients will receive even more fragmented care, and our lives will be more difficult as we stay within ‘refer for opinion’ rather than shared care decision making.

Dr Jonathan Inglesfield is Medical Director of Guildford and Waverley CCG, lead of the CCG’s Integrated Care Programme and a GP in Surrey

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Readers' comments (18)

  • "Locally we now have an EMIS terminal within our acute hospital accident and emergency department capable of viewing the entire primary care record of 20 of our 21 practices."
    And that's where the problems start. The information is gold dust for scammers and crooks. Whether deliberate, maliciously or by incompetence, patient data will leak as soon as it's shared widely.
    Hand over the keys? No!

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  • Oh the delicious irony.Perhaps the article's author might have a comment for this thread?

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  • Dear All,
    It gets worse, because that EMIS terminal allows access to data that is 1) not legally accessible without consent, 2) not what patients would expect and 3) not compatible with Dame Fiona's "need to know" standard. The oft quoted mantra is "patients expect the doctor in front of them to have acces to their record". This lacks granularity. If asked "should the doctor have access to ALL of your record ?" they will say no.
    This is not opinion, this is researched evidence. It is a fact that only 83% of patients beleive hospital doctors in out patients should have access to their entire GP record. The number for Ambulance staff is 47%. The figure for hospital clerical staff is 18%. The figure for nurses in hospitals is 53%.
    This is what patients say they expect not what doctors think patients think.
    Yes sharing information is necessary when necessary but indiscriminate sharing is unacceptable. That EMIS terminal needs to be monitored very closely.
    Paul C

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  • As always the devil is in the detail. The problem is the lack of trust in HMG and its subsidiaries (NHSE, DoH, NHS Data etc etc). This lack of trust is well founded and until we can be confident that there will be no more sales of patient data to commercial organisations or unauthorised sharing with those not directly involved in the care of individual patients sharing data cannot go ahead. Its a pity as the benefits are potentially enormous but while "authorities" remain so demonstrably untrustworthy it has to wait.

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  • Which A&E is this Emis terminal in?

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  • Thanks for the comments.
    So let me explain where I am coming from on this. I am in the relatively unusual position of being a GP Partner and data controller and an occasional A&E officer, and thus have had to justify in my head the relative risks around data share and failure to data share. Yes of course there are risks in sharing, and that is why GPs need to be leading the discussion on safe and appropriate sharing. However each time I visit A&E I witness the harm* caused by the failure to data share – its simply not a zero sum issue. (*”Harm” varies but at its minimum the burden of recanting a clinical history with associated inaccuracies and delay is a form of harm, of course more serious degrees of harm are possible.)
    I don’t personally believe the patient held e-record is the solution, mainly for reasons of practicality. Yes Paul you are right, the policing and consenting needs to be robust, but GPs are in an ideal position to set the terms of the sharing and reassure our patients. As I said in the article my view is we need to move from saying a blanket “no” to a position of “maybe if you can show me the safeguards”. I don’t believe that my patients would be better off if I moved from a computerised GP record back to a paper based one, I think they would get worse care, and that is a logical extension of the argument against data sharing.
    The status quo of letter-based information sharing needs to change – GPs are increasingly swamped by the volume of narrative letters – its old fashioned and unnecessary. We have the opportunity to change this on our terms, but only if we engage with the issues.
    Have a good day.

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  • Why should patients not have 24/7 access to all their hospital and GP records and tests??
    If you have a centralised database you need to know who has access to it.

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  • If the DH/NHSE want to hold it fine. It would save us a lot of energy on policing access and who else makes the mistakes.

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  • Pharmacy 2U just blew the checks and safegaurds argument out of the water.
    130K fine less than that issued to the tax dodging consultant.

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  • You want my data?
    How much are you offering?

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