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Online records access will put vulnerable patients’ lives at risk

Giving patients access to their records is a laudable aim, but also brings real dangers, writes Dr Geoff Schrecker

Working in a deprived area of Sheffield I feel deeply concerned in the face of the implementation of record-sharing and so-called ‘improvements’ to record access.

As many GPs have argued, there are benefits to patients from improved record access, but I strongly believe that we must also defend the needs of the minority, for some of whom ‘better’ records access will seriously increase the risk of abuse.

Take for instance the patients in my care who live with a violent partner, carer or guardian. The GP is supposed to be one of the first places a patient can come to disclose abuse; recording these reports is a vital part of safe record keeping, but these patients are by definition at risk of coercion into giving record access to their abuser.

Once the perpetrator knows that all patients have a right to access their records he (and it usually is he) may well insist on access to the victim’s records – after all, it is just another way to exercise control. A record of disclosure would put such vulnerable patients at serious physical risk, it is not fanciful to anticipate that some may even pay with their lives.

There are also young patients at my practice who wish to keep their sex life private from parents, for instance – if parents were to have access to their records, then on some occasions they would face being thrown out of their home. We can hardly ask young people to act responsibly for their health when we ask them to risk their safety in doing so.

Confidentiality for some patients must even mean the need to keep appointments private from the people they live with.

Take, for instance, a woman seeking contraceptives against the wishes of her partner. Even if records don’t disclose details about diagnoses seeing the medication, as is now proposed can be enough to put them at risk.

You might argue that the minority affected negatively by improved online access to records is small compared to potential gains, but I would disagree. As one colleague put it to me recently ‘our job is to develop systems that protect all of our patients equally, including the most vulnerable, and not to pivot the perceived greater benefits against the fewer but real risks.  We are not in the game of trading one off against the other or else we will lose sight of the vulnerable individual whose voice is already likely quieter’.

First do no harm

Others might argue that there are ways around this, and we have certainly considered some at my practice as we seek to reduce the harm that implementing wider records access will bring. But if online access is rolled out, and we seek to protect patients by stopping access, then abusers will want to know why the victim has been made a special case by the GP. This reinstates the original problem, putting the victim’s safety at risk and inhibiting the patient from seeking treatment.

There are still no failsafe solutions for helping vulnerable patients to access records safely, and there still seems no recognition from the BMA, RCGP or Government as to the potential severity of the unintended consequences of the plan. The maxim ‘First do no harm’ applies as much to the information we protect as it does to the medicines and procedures we prescribe.

In principle I am a strong advocate of patient access to their records and I would welcome a safe system. But unless we develop this system gradually – rolling it out in a controlled manner while addressing the risks to vulnerable patients – we risk the whole programme backfiring in a way that will not only cause serious harm to some vulnerable individuals, but also lose all the benefits a cautious and thoughtful development might bring.

Dr Geoff Schrecker is a GP in Sheffield and chair of the Watchdog Committee at EMIS National User Group.

Readers' comments (12)

  • The government has introduced an id checking system - implemented yesterday in all SystmOne sites - through the back door of Connecting for Health. Like record sharing, this has been rolled out without any consultation with people working at the coal face with the consequence that it is flawed. Practices are required to enter how a patients id has been verified when a logon & password is issued - or presumably reissued; there are no protocols about how this is supposed to work. Of course this is contrary to BMA guidelines about id's and it will effectively force practice's to introduce I'd checks on registration.
    This is the government's answer to 'protecting' patients from those who want to abuse them further - as outlined above. It's the politics of all power to the people that has gone too far. The balance must come back to those who are trying very hard to help these vulnerable patients.

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  • Whilst all this is going on, nobody has consulted the folk most involved … the patient!

    I think this proves that this has nothing to do with improving services fro patients, just a money grabbing idea fro our nanny run state to make a quick buck.

    I now restrict everything I tell my GP, I have no trust in anyone in my GP practice, not because of my faith in them,but they are dictated to by NHS England.

    I have ordered a paper copy of my medical records (for legal reasons) as it appears access will not be retrospective. Perhaps now it is time everyone did this as they may not be available at a later date.

    This money grabbing system with destroy a patients trust in their GP and family members will put folk under pressure to give access at home.

    What about folk with mental health problems, it can be devastating to read reports about their health, especially those with suicidal tendencies … the wrong word, the wrong phrase can be enough to push them over the edge.

    It is the vulnerable that are going to suffer, will a patient tell a GP they are being abused, if there is the slightest chance the abuser can agin gain access and be aware of this? Bullies just like the government bullies will find a way

    Whatever happens now, even if this plan is dropped, I would never trust the NHS again. I have put blocks on sharing medical information in every area of my care, including in hospitals where they now require my written consent.

    Many folk will think there is nothing on their record that they are worried about, but there is enough information their for identity theft and for all those private companies to start sending us mail to sell us what they think we need. What about folk in nursing homes, does this mean the nursing home can access patient records? How would a GP surgery know it is the patient that is registering and not someone on their behalf … supposedly?

    On line fraud is rife, if someone can break into the White House records, how long do you think it will take to break into medical records?

    The most dangerous part is NHS number, postcode and date of birth, that is a hackers gateway to do anything they want. your postcode gives them your name on the general records, then your bank account, private records etc.

    This is going to be one almighty disaster for anyone that takes part. Very very scary indeed, but then so it this government!

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  • The plan is for access to their GP records for anyone who wants it. It is not forced record access for all. That is likely to keep the risk of coercion low. I do agree that it is a risk, but unquantifiable at the moment. In the US coercion does not appear to be a serious or frequent issue in the record access field.

    Overall, it is, like everything else in medicine, a balance of benefit against risk. Just like all medication, or listening, or surgical intervention. 1000s of patients have been using record access across the UK for some years. Effectively a long-term pilot. It appears to be safe, offering lots of benefits.

    Check out www.myrecord.org.uk

    Shurleea, record access does not change where your records are kept. It just means that you can see them. It means that you don't have to print them all out - you can see them on your mobile whenever you like. You can check the accuracy of the record and check that things have been done that you want done. You don't have to phone up for results. You can take your records with you when you go abroad and show them to clinicians if you need and want to.

    It's safer and more efficient.

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  • Thanks Geoff for your thoughtful comments here and concerns raised. I understand those very concerns too which are real. There are risks even without accessing records which we have to manage as we do not live in a zero risk world. Sharing the concerns with our patients and the wider world is key to enabling them to make informed decisions based on their priorities and needs. We have therefore developed an extensive online explicit consent process that tries to recognise these concerns too.

    http://www.htmc.co.uk/GetAccessNow

    We have used this process for the last 7 years and over 2400 patients are now enjoying Records Access and Understanding. Although I recognise your concerns, we have not experienced any of them partly because of our vigilance and also because we share our concerns directly with patients too to help them decide together (Shared Decision Making). Here are YouTube videos we made 7 years ago with a patient of mine to discuss the issues and a whole load more that you may not have considered too

    http://www.htmc.co.uk/pages/pv.asp?p=htmc93

    Here is the latest data on how many patients have signed up for the service. This continues to grow, Notice how many patients from so-called vulnerable groups are actively asking to get access to their records?
    http://www.htmc.co.uk/pages/pv.asp?p=htmc0328

    This shows that if we put systems in place, develop a culture to support a Partnership of Trust between patient and clinician and supported by the manager then we can overcome many of the concerns and move to the biggest issue - how do we spread this so that others can also benefit from the services we are offering at Haughton Thornley Medical Centre (http://www.htmc.co.uk).

    Let's keep the conversation going on twitter (@amirhannan or @htmc0) so that others can also bring their experience and knowledge to the fore too!

    You have done a great job in raising awareness of the issue, Let's now put solutions in place and move the whole system forwards. I would love to come and visit you and learn more about your own experiences as it seems we work in very similar places with very challenging patients who are very appreciative of what we do for them. We are also very appreciative of their support when we do things right as well.

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  • There is a petition, just started, here:
    http://epetitions.direct.gov.uk/petitions/60849

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  • My treatment/life is being compromised because online record has glaring untruths & ommissions & correction refused .Yet again it is being used to delay referral when have moved because of terrible discriminatory treatment . It is not 18 weeks if sent to wrong person because temporary PA doing it .But 18 weeks each next time to a Doctor who speaks to you & corrects the GPs referral letter .This has caused condition to become worse even though had sudden cardiac arrest dying 3x last time..the same is happening again..

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  • ID Checking is contray to DH advice I have received from Mr Sean KIRWAN Information Goverance Dept at the DH. A patient is under NO obligation to provide to access GP services whatsoever and there is NO legal requirement on the patient to provide ID.

    Can SystmOne ID requirements be overriden?

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  • Hi Geoff, I think you are absolutely right to consider the situation of access to records & the vulnerable patient. As you say, "first do no harm". It could be argued that by not allowing patients to have access to information which will enable them to make better health choices, we are not providing the best environment for safe medicine. Just a simple thing like checking the report of a consultation is very powerful. The patient retention rate of information after a consultation is frighteningly low. The patient is less vulnerable if they can check exactly what was decided & that they understand both the situation & the next steps they need to take. This is relevant for consultant letters too.
    To protect certain vulnerable patients not all the information needs to be displayed & we need to work on the best ways of doing this. Your experience of working in this field will be invaluable.
    However, for the abused patient you must currently have strategies in place that you don't apply to all your patients. eg when an abuser insists on attending a consultation. To make good health choices patients need good quality relevant information & a clinician willing to discuss & advise. Easy access to personal information is a vital part of that process so we must be prepared to move forward whilst working together on the harder bits.

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  • Many thanks to everyone who has taken the trouble to read and respond to this piece. As I say in it I am actually a strong advocate of patient access to their records, my concern is the government stated requirement for all GP practices to offer it by April 2015. As shown by the work of Amir and the support of Ingrid it can be a powerful tool for the good when implemented thoughtfully and well.
    I do still feel however that there a significant hurdles to jump if it is to be rolled out en masse.

    As I see it there are now two key requirements for this to realise its full benefits:

    The first is to implement some (minor) technical "fixes" enabling more sophisticated flagging of confidential items within the records.

    The second and major task is a campaign of education and training. If the government is serious about good patient access to records they will remove the April 2015 target, make training in records access mandatory in the same way as resuscitation or safeguarding, and put up the money to support it.

    No doubt it would make some of the patients of people like Amir and the other trail blazers sorry to lose him from their surgery for a while, but it would be to the enormous benefit of the rest!

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  • One of the difficulties of central government taking a great idea and then legislating for it's universal implementation is that is so easily becomes a watered-down, pedestrian, "tick-box" style exercise, without the innovative passion and enthusiasm that drove the innovators to make it successful in the first place. Human nature dictates that we don't like to have systems imposed upon us, we don't like to be told what to do. So something that worked well because the original teams bought into it and gave it their all becomes just another government initiative that people resent, so it doesn't work well, because people aren't behind it. This patient record-sharing idea is such a great one and if done properly could significantly change the doctor/patient relationship for the better, that it would be a shame if it is implemented too quickly and imposed upon doctors who don't yet share the same vision and passion.

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