Many years ago I learnt a very hard lesson. It’s about good intentions but still getting it wrong. We all like to think that our contribution to care is visible and valued by others but do we really take the time to understand the perspective of others who support patients and just as importantly what putting the patient at the centre really means?
My lesson is from the time when I worked at NHS Direct. It was a fantastic time we were breaking new boundaries and doing things across the country that hadn’t been done before. We were proud of our nursing assessment process. I was responsible for the technical system we used; not the algorithms, but the system functionality, that is how it works. We regularly referred callers to speak to or see the doctor in out of hours care. We were one of the first sites to integrate these services and we had a great relationship with the clinical leaders in that organisation. Providing seamless care was our aim across both organisations.
I was trying to develop a system whereby in our electronic referral to the doctor we included information about our assessment. The options were limited. We held a history of the full triage, all the questions asked and all the yes and no responses. Of course for a complex assessment this could be many many questions and as far as the nurses were concerned all of those questions were important, they all added weight to their referral. They were proud that they had done a comprehensive assessment, and wanted the doctors to see what they had done.
The doctors decided they didn’t want it- a stand off!
A difficult challenge to us at NHS Direct! I held firm. Surely they needed to understand why we had made the referral?
This went on for a while. We didn’t understand why they were so resistant, how could they refuse clinical information about someone we thought was ill enough for them to need to see them! Finally, in my wisdom, I decided I needed to find out more and persuaded one of the doctors to let me spend some time with them on a night shift. Arguably I should have done this earlier but, as you know, we all live and learn!
In the car in out of hours, in those days, the doctors were receiving referrals from the nurses directly and they only way they could view the referral was to print it off on a tiny portable printer. The doctor showed me what happened if he printed it off – it rolled out like an out of control Andrex* toilet roll….. Clearly not the communication that the nurses or I expected.
I learnt lots of things from this experience; a reminder of the need to listen, that we were not always the most important, that being proud can get in the way sometimes but most of all to stay focused on patients and their families. Fortunately I was able to put it right and improve what we did. We created a system where the nurses could create a short summary to transfer to the doctor; a better solution all round.
I think the lessons that I learnt then may be useful today too……
It is true to say that I really do feel that informatics is finally here to stay. Every meeting I attend everyone is talking about how important it is that everyone can see information about patients/citizens wherever they access services, that we need to reduce duplication and that this will contribute to a better patient experience. Sharing information is discussed as a fundamental enabler for service transformation. Excellent! I at least don’t have to have that debate any more.
But then, I am rightly challenged on why do we have to ask for this now, why isn’t it here already? Surely if banking can do it we can? And so it goes on. I have worked with some of the most brilliant technical folk, they are so clever and awesome and I feel so lucky. They tell me that technically what we need, as an enabler for service transformation, can be delivered – so what’s stopping us besides money?
I am starting to wonder if the problem is similar to the one I faced at NHS Direct.
Everyone thinks that their part of any ‘record’ system is the most important, as did those nurses. There are many many conversations that loop round and round about standardisation of records, terms, datasets and about sharing agreements. But no one ever gives anything up. Equally the information governance debates centre on why not, rather than how can we, scaring the living daylights out of staff. And round we go. Although it’s never personal and it’s generally lovely people (most people in informatics are lovely 🙂 )the conversations loop round and round like a merry go round. I think we circle focused on our records and our contribution to care, as we did back at NHS Direct, rather than looking at the whole system and from the patients viewpoint.
I’ve started to wonder if, like I did at NHS Direct, we are looking at it from the wrong perspective. I think what many clinicians mean when they say a patient centred record is ‘my view of a patient centred record’. What’s more, I think portals, the current trend, is merely each group agreeing to share ‘my patient centred record’. Better than not sharing at all but perhaps an ‘I’ll show you mine, if you show me yours’ approach that doesn’t really focus on the patient at all. I’m not so naive as to think that we don’t need some specialty systems – intensive care is intensive care – but I still think we might have got some of the principles wrong! It leaves me wondering if informatics needs to embrace co-production in its fullest sense; that is getting patients/citizens to describe what they mean by a patient centred record in collaboration with the people who provide care and services and those clever IT folk. Once we start this conversation then perhaps we need to accept that we have to find a way towards this goal in a way that puts aside our existing professional and organisational perspectives. It may be that it’s simpler than we think? Perhaps it throws away the concept of organisational records? Maybe that’s too hard but worth thinking about surely? If we muster all our brains and hearts along with patients perhaps we could co-create a new picture of the future?
Is informatics ready for such radical approaches? So why is it that we haven’t already embraced them? I’m not sure but I suspect it’s cultural and a difficult one to crack! Informatics is more about analytical approaches and logic and not quite so often about hearts and minds. The nearest I have seen is the development of hack days but these tend to retain control in the technical domain.
But as I learnt a long time ago listening and truly hearing are key to better solutions and I wait optimistically for the conversations to change.
*other toilet roll brands are available
Really thoughtful blog, thanks for sharing your expertise and experience with us. Paul Watson (@Paul_RMHN) shared this video earlier this evening and it may be helpful or just stimulate more thoughts on different ways to approach things: https://www.youtube.com/watch?v=zDZFcDGpL4U
Thanks again, David x
Great blog Anne. I think this is a good example of how ‘ living our values’ plays an important part. It’s so easy to think you are doing the right thing because you think it’s right. But if we are true to our values we would be listening to others, including the people who use our services, and doing the right thing can sometimes mean something slightly different.
Interestingly, when I’ve had discussions about co-production, albeit from a slightly different perspective, I’ve met some real resistance. I think perhaps from anxiety more than ill-intention but resistance all the same. Perhaps this is where using both is the right thing to do?
Using this resistance as a valuable learning opportunity, listening to the concerns that underpin their resistance as valid and putting them on an equal footing with our own enthusiasm and the views of those using our services. This would lead to co-production, but just takes time – as listening properly to others always does.
But then with you, I know I’m preaching to the converted! Thank you for writing this, I hope others read and reflect and if course join us on the co-production journey.
Interesting blog, thank you. It is good to listen and learn..I have.
One of the emerging problems with digitalisation/tick box records has been the loss of the “story” in medical records. As a frontline acute doctor, I waste more time trying to elicit history that I need but which in the past would have been part of the normal “clerk-in”. I have just yesterday had to postpone two operations for such reasons because things were missed because the tickboxes force people to disengage their brains and not think laterally. So the message you give is true….listen to and dont dismiss anyone’s viewpoint, but remember it is the clinicians who are ultimately responsible for the patient & their needs to practise safely and efficiently must never be trumped by concepts upstream.
I really enjoyed reading this Anne, thank you!
I’m sure it’s true that this is a lesson we learn over, and over again. It fits in with our friend Gill and ‘who’s shoes’: unless we stop to think how the ‘territory’ looks from the other person’s perspective, we fail to realise that our own ‘map’ does not match their’s. The lesson (which I first learned from a #MedEd course called Scaling the Heights, “the map is not the territory”. I keep that one in mind, always… until it slips out of my mind and I relearn the lesson!
In your example, you, your team & patients were happy bunnies when calls led to satisfied customers & the end of the clinical pathway; but if it did not, and the outcome was the need for a transition to another pathway (doctor visits patient) that was the cause of the grief. I think another take-away message from your blog is the extent to which care-transitions are fraught with risk and danger. As humans we think this baton-passing should be the easy bit, we get lessons each day that illustrate how that is not true. There is of course a lot of informatics focus on improving the ease and safety of care transitions (especially in the USA), but we have a long long way to go.
I have a recent personal example. Sadly, my father died last month. His death was expected after a long and difficult illness, bravely borne. A communication error in his discharge summary (the otherwise excellent hospice docs sent the summary electronically to an incorrect GP) meant a delay in his new GP gaining access to his primary care records. These became accessible only the day after my father died. The unintended consequence was that his ‘do not resuscitate’ order was rescinded and when his condition changed (as we all knew it would) he died in hospital, following a futile emergency admission episode. My sister and I were left bruised and dismayed.
If anyone from NHS Wales is reading this, e-discharge summaries are an important informatics tool; but can you build-in a safety mechanism that ensures it gets to the right place? Just one small step in making care transitions safer.
Thank you David – I enjoyed the video too and I guess what you were alluding to is shifts in paradigms, that only when we make these fundamental shifts can we really address some of these seemingly intractable problems. I agree but then I have always been a lateral thinker 🙂
I appreciate your taking the time to comment too Anne X
I feel that resistance too. My feeling is that its a little bit like going into the sea when its cold. A slow walk in never works for me – it takes courage to do the full dunking thing. I think people may be scared of losing control. Anne x
Thank you for taking the time to comment.
You cite a great example of when a record fails to support everyone who is part of a patient’s journey 😦
I believe that a different way to develop record systems across stakeholders and including patients might help. Of course it means compromise sometimes too but hopefully not where it matters most.
I spend lots of time mediating between professionals who think their way is the only way. Sometime accepting that someone else’s need is greater than theirs and being prepared to change for the greater good is what needs to happen but I don’t see quite so much of these behaviours sadly.
But I’m an optimist and I do have a sense of the potential for change 🙂
First of all I am so sorry to hear about your Dad and also that things went wrong too at the most difficult time.
I agree that transitions are scary times and that is exactly what we were trying to do, make sure we were safe – we were convinced that more made it safer. We learnt that less is sometimes better than more and that we needed to listen more carefully to why.
In the case of the discharge summary it was probably human error and whilst electronic systems can help they don’t de-risk everything as you know 🙂 But I bet you and I could have designed a system, of course with hindsight, that would make this a lot harder to make a mistake, so learning is vital. As you rightly say NHS Wales might just read this…. 🙂
Dear Anne, when u go to the garage for a service, you as the owner get a record of what has been done, the cost etc. you can even specify the content of that record, to allow you to to understand it. However, you do not tell the garage what tests to do, what figures to take note of and what not to. No, that is their record because they ultimately keep you safe on the road. It seems to me that at the moment, much is being decided about the medical records by non medics who think they have the customer’s interest at heart and know best what to record and what not to. That is wrong and actually puts the patient at risk, is inefficient and wasteful of time that could ultimately be used for other purposes/patients.
I have a problem with the lack of time being made available to clinicians for being part of the process of deciding what they must have in the records, non negotiable. The result is a botch job which all the patient consultation in the world will not correct or smart IT input. This explains our current sorry state. The need should dictate the technology and not the other way around…which seems to be what has happened in the 35 years I have worked for the nhs….so much waste.
All for changing that and look forward to reading future blogs from you. Keep up good work. Bw. G
Anne, hi – Really interesting blog. My experience from working on integrated care records programmes (using portals) is a bit more positive in terms of collective commitment and engagement. The key thing seems to be developing the approach based firmly on service improvement goals and more recently the Better Care Fund priorities in an area. Co-production and effective engagement with patients and the public is essential, but there needs to be a strong clinical / professional focus on what is the essential minimum data that needs to be accessible across care settings to enable the desired service models to work. I often see more emphasis from clinicians on what they need to see from other settings in order to improve the safety and speed of their bit of care, rather than thinking their bit if the jigsaw is most important.
Ironically what can also help is that there is a non-clinical party involved in helping to facilitate and project manage the process that is not aligned with just one care setting / provider. Now working in a Commissioning Support Unit, I’m finding that we can help being parties together to develop integrated care records but not being driven by one particular provider perspective.
A good example of a shared records programme is the Oxfordshire Care Summary, with a video about it here – http://youtu.be/w8BNK44x-ZI
Great to hear positive experiences too. Mine are not all negative and I have been doing this for 15 years now. I do think we need a shift of emphasis tho. Its happening even in the US.
But then I have always been radical and non-traditional. Its just how I see the world I think 🙂
We came to Oxford for the CCIO leaders network last year. But we only went to the trust (dont get me started on that unless we tackle community care nothing will change 😉)
Thanks for taking the time to comment :0)
Love your blog. However, I’m really wary of having these centralised records that are accessible to all clinicians. You may see it as efficient, but in my experience it’s highly problematic.
1) Records (at least mine) are full of inaccuracies. Mine have all kinds of errors about drugs, dosages and misdiagnoses and do not present an accurate view of my health situation. I find a lot of doctors don’t possess even the most basic history taking skills.
2) Doctors always privilege the view of other doctors over the view of patients. If you have an error or misdiagnosis in your records, the doctor you see currently will give more weight to the opinion of the past doctor who made the error in the record, than to the patient’s view. This can lead to further errors in your current treatment as the current doctor doesn’t have an accurate picture.
3) Patients do things of their own accord that are not reflected in their records eg. take supplements, buy drugs off the internet. In my case I see a private physician – that’s not documented in my NHS records
Records should be held by patients and made available according to the patient’s preference. They do it in other countries – why not the UK?
Less control for clinicians, more control for patients.
Thank you for your comment.
I agree with you.
You should have control over who sees your record.
But the fact is there is already information held about anyone, like me, who uses services from different places. It would be better for everyone (my opinion) if things were consistent, accurate and correct and, even if not necessarily held in one place (i.e. Not a big database) but viewed in one places as if it was one record and that includes viewing by the person the information is about.
What is presently happening is that people (patients) are not involved in how we design and deliver most of this – its rare to have patients involved in informatics. I think it would be better if they were and that was the point I was trying to make 🙂
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