Why we have moved away from permission to view in the Great North Care Record
Over the last few months, it’s fair to say the programme has been wrangling with our permission to view policy.
Permission to view as an enabler
Being asked permission to access a patient’s record at the point of care enabled us to share 3.6 million records. We went above and beyond the legal basis. We added in an extra layer to safeguard that GP records were only accessed with permission from the patient.
Three years ago when Medical Interoperability Gateway (MIG) was being accessed in out of hours, ambulance and A&E, this policy served us well. The anecdotal evidence we heard back from frontline practitioners, was – everyone said yes! This policy provided GPs with assurance that if patient was happy for their record to be viewed, then they would be too. Clearly in emergency situations, where the patient may be unconscious, a “break glass” option allowed professionals to access the data. And their reasons for doing so were fully auditable.
As we are moving away from the MIG to the regional Health Information Exchange (HIE) – we revisited this policy. Certainly, our assumption was that this policy would continue.
It’s fair to say within the HIE project board, we have had a spectrum of opinions about whether the policy should continue. From a legal perspective, we don’t need to ask. But our historical position has always been that it’s nice manners. Patients wouldn’t be surprised if they saw a secondary care doctor had accessed their record. Because they were asked about it at the time. But it was some of the practicalities and current clinical practice that has made us review this.
The reality
We have spent the last few months going out and speaking to people from across the region. We wanted to understand what the current view is on retaining permission to view as a policy. And to also find out how the policy is played in practice.
What became clear as part of this informal review was that there are different practices across the region. As MIG use was initially for A&E and out of hours, the patient would be in front of the clinician and therefore permission was easy to request. Use of the Great North Care Record will be extended to other services, in many cases, clinicians would need to access records prior to appointments. They might well say to the patient they have accessed the record, but after already viewing it. We see there is a legitimate requirement in for instance, out-patients appointments, or community visits. This enables clinicians to have access to data, making them more informed and providing safer care.
And, of course it is perfectly legal for clinicians to view this data – with or without the patient’s permission!
We have publicly promised patients throughout the last three years that they will always be asked prior to their record being accessed. However, the reality of the situation means that we can no longer make this promise as we extend use of the shared care record beyond emergency and out of hours care.
This decision has not been taken lightly and there is now an emphasis on the programme to raise awareness with the public about how their data is made available on the HIE, and what their rights are, including the option to stop their record being available.
Creating a culture of trust
Permission to view as a policy has served us well and was key to our early success. 100 per cent of GPs in our region would not have agreed to share in the first place. Many of the GPs we have spoken to have moved on and as trust within the system has increased, the requirement for permission to view has reduced. Should a GP have to ask to view hospital records? Clearly though, there is not consensus and we have met with people who are very passionate that we do not change. The information sharing culture in the region has changed in the last three years. We have created the level of trust needed in the system for information sharing to happen.
But we can’t have a situation where we promise one thing to the public, and there is a disconnect with the reality. We need to build trust with the public to ensure we put the security and respect of their data front and centre.
Whilst this decision to move away from permission to view has been confirmed by the Great North Care Record Delivery Group (soon to be renamed Programme Board). We are keen to have ongoing dialogue with professionals and patients from across the region to ensure we get this right for the people of the North East and North Cumbria. If you want to talk to us about this, please post on this discussion thread on Discourse, or email us.
Comments for this story
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Comment by Ian Harrison @ 27th November 20195:01 pm
It’s interesting to think about change and how we deliver change. The transition, through trust, to allow sharing of data has been long and hard. This is even though the patient thought it happened anyway. Now we are moving away from recording the request on the basis that everyone thinks we do it anyway. Is there adequate trust amongst organisations and General Practice to support this as the next move?
From a patient perspective (I am also a patient), I have no objection to my record being reviewed in order to support improvements in the provision of care and also to help reducing the cost associated with repeat tests but the courtesy of knowing this actually taking place, I feel, provides me with the assurance that my data is being considered for appropriate access. Sometimes being told something like this, what they’re going to do with the information or if they’ve found something that supports my care, can be really supportive and actually give me confidence in the care I’m being provided.
Even within paper files, there was no consent to sharing. A paper file may hold data from several specialties, all compiled into a single record. Whoever was treating you had access to all the data in the paper record. Is this any different in that respect? probably not, just extending the boundaries of the record from a single organisation to region wide.
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Comment by kcommon @ 28th November 20191:22 pm
You raise really interesting points here Ian – thank you. Especially the bit about we shared with paper anyway without asking. We all have a part to play in informing the public about how their data is accessed, and making it really clear how to stop it from being made available if the patient isn’t comfortable with their data being made available.
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Comment by Neil Racher @ 28th November 20191:50 pm
This great news, as a patient like my Mum, whether its the GP, Hospital, Nurse to her its all NHS. So, from the HIE perspective the consent will be removed, however, locally is it up to local IG’s to decide if they want to add it to their HIE connector or Generic Viewer?
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Comment by kcommon @ 2nd December 201911:39 am
As I understand all the regional IG leads have agreed on this approach. It is up to local GP practices to decide whether they make data available and sign the data sharing agreements.
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Comment by martin w @ 28th November 20192:24 pm
I think patients assume that their records are automatically shared in the interest of caring for them – with the exception of sharing with Social Care who can often be viewed with suspicion.
Within Health, as a patient I would be horrified to hear that those caring for me are doing so with a limited view of my history, and would consider this to be a system failure.As a GP practice manager, we have a handful of patients who don’t want their data shared at all, ever, with anyone. I strongly believe that they misunderstand sharing and imagine it means sharing with Amazon or Sainsburys. We’ve re-written our opt-outs to make explicit the potential harm they are doing to their care by preventing sharing.
There are a very, very few who have had such negative experience with authority that they assume that non-health & care entities such as the Police have routine access to everything about them unless they opt out. We’ll never convince this group until their underlying mindset is changed.I think you’ve made the correct, brave, call on this, and thanks for making the effort to explain the rationale for it.
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Comment by kcommon @ 2nd December 201911:40 am
Thank you for your very kind comment Martin. We do intend to write out to the people who have already opted out of record sharing. We do want them to understand the impact of opting out, but as you say, many people that have, are very passionate about this and need to be able to have the choice.
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Comment by Andy N @ 31st January 20209:55 am
Hi from a social care perspective interested by the remarks made by Martin W in General Practice that health patients view with suspicion their health info being shared with social care. It would be really useful to understand via qualitative research what those anxieties amount to: what concerns people have about what social care are doing with their health information and use that to commence a dialogue with patients about how using health info can speed assessment processes; hospital discharge and accurate care planning. I understand that there are real concerns given social care is perceived to be ‘rationed’ and operates eligibility criteria. Health information can obviously be critical in helping to determine whether a client receives service or not. Good discussion and debate!
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Comment by kcommon @ 3rd February 20204:43 pm
I think there’s a bit of a lack of understanding about why social care need access to the information. Its really clear to us in the programme team that the information is already shared but just by much slower means, such as ringing around trying to find out more about service users. We haven’t done any specific research with GPs about their concerns but we did a YouGov poll in 2018 of the public and its definitely more mixed in terms of social care having access to medical data. In health its much more typical for patients to be happy for their data to be shared, but with service users, there it was more mixed. Its a fascinating subject to discuss. We are hoping to delve into this in more detail in the coming months and see what staff and patients find acceptable and what controls and assurance would need to be in place
