I have heard it said on many occasions that “technology will change the paternalistic culture within the NHS and Social Care services” – but experience shows that Technology does not lead a culture change as technology is usually developed to support a current culture! In my personal experience, technology can support a change in culture, but is unlikely to be a driver in the culture change.
Since the Power of Information initiative was published three years ago, which specified that all providers of Health & Social Care ashould have a plan to allow online access for service users to their own records, there have been a number of technology initiatives – but there is little evidence that any of these initiatives have changed culture, but have merely supported the existing culture.
A good example of technology being used to support the current paternalistic culture is the various “Connected Care” initiatives which are being commissioned by various CCGs. I have personally taken part, as a patient, in some “tick the box, we have engaged the patient by telling them about” exercises about the Your Connected Care (the initiative in the Midlands) – but all the pertinent decisions had already been made by clinicians, without the patient! When I asked why it was planned that 14 different organisations would have access to my record, but that I, as a patient, would be excluded, I was advised that it was too late to change the process as the technology had already been developed!
I have advised my GP that I will not give permission for my records to be part of the Your Connected Care until I too have online access to my own record, so that I would be able to check the accuracy of the information that is being shared about me!
It would seem that my experience in the Midlands is similar to that being experienced with other “Connected Care” initiatives in that all the schemes appear to have been developed “by clinicians for clinicians”, with little or no consideration being given to having patients involved in co-production. I have personally seen details of a Connected Care initiative being developed in Lewisham as well as one in Leeds – neither appear to have received any input from the patients or citizens in development – the technology has been developed within the current paternalistic “we know best & don’t need input from patients” culture
I recently learnt of a “Connected Care” initiative in Leeds, and sent an email raising concerns to the clinical lead of the Leeds initiative. I received a comprehensive response to the questions that I had raised – see below (In the response, the questions which I raised are shown in red).
The response from Leeds does not fully address the concerns about patients/citizens being 'exculded' from the development process - patient engagement seems to have been been similar to the 'tick the box' exercises that I have personally experienced in the Midlands!
Response received in response to email query about Connected Care initiative in Leeds
Thank you for taking the time to email us and please accept my apologies for the delay in coming back to you.
I do appreciate your constructive criticism/feedback on the work of the Leeds Care Record project. While I may not share all your views entirely, I’m always willing to agree that we can improve our engagement with patients and I’m wondering if you’d like to get more involved in this with us?
Let me firstly address the concerns you’ve raised before I’ll explain our future plans and seek your involvement and support.
The Leeds Care Record appears to be an initiative 'for clinicians by clinicians', with little or no consideration being given to maximising patient safety.
Your description of the Leeds Care Record for “clinicians by clinicians” is, I think, a fair one. The NHS & Social Care systems are on a journey into the 21st Century with many improvements to make. You’ll be aware that many clinicians are trying to do the best they can to look after patients with paper based records in many settings. The Leeds Care Record was certainly borne out of a desire to support clinical professionals under pressure at the “clinical coalface”, from my clinical base in the Emergency Departments of Leeds, to GP surgeries, etc, to make patient care both easier and safer.
With regards to “maximising patient safety” I’d have to say that was and remains a real driver behind the Leeds Care Record. In the current system clinicians are regularly dealing with patients without the access to the full patient record in front of them; we know that is not ideal and therein lies a risk to patient safety. The Leeds Care Record is aimed at supporting clinical professionals with a more complete patient record, thereby absolutely aiming to improve on patient safety.
a) If a patient in Leeds had online access to their own record and travelled to London (or abroad), in the event of a health issue arising whilst away they would have the functionality to share their record with a clinician in that area - thereby ensure patient safety
This is a very fair point, indeed this requirement to share data between systems in Leeds and London, Cornwall etc has been a goal of Electronic Patient Record initiatives for many year. The reasons this has not yet been fully achieved are many and complex, but in simple terms relates to the complexity of modern 21st Century healthcare with many clinical teams who have many differing but incompatible information systems. We recognise this is not good enough and this need for “interoperability” has also been a key driver behind the Leeds Care Record project. To begin we have had to work on data exchange between clinical systems in Leeds which has not been trivial. Further interoperability will take some time as there are several systems not technically mature enough to share information at present and some vendors have not recognised the critical importance of interoperability to allow for information to be shared, having taken an overly commercial perspective in the past.
Thankfully now we are opening discussions with other Health and Social Care Integration Pioneer communities in England (of which Leeds is one) on sharing data with the patient via a personal health record (PHR) as well as between systems in Leeds and London etc. I do agree that giving the patient access to their own record is absolutely the way forward, and as mentioned we are now working towards that and I’d like your help on this if we can get it.
b) The NHS has a mantra of 'nothing for the patient without the patient' - but the Leeds Care Record completely ignores this. The principle adopted in Leeds seems to be patient-centred, and that the patient should be ignored as part of the process.
On these points I’ll have to firstly agree and then politely disagree with you.
Certainly the approach behind the Leeds Care Record is deliberately patient centred.
As part of that effort I think it’s fair to say that the team who’ve been helping me deliver the Leeds Care Record have not ignored patients in the process, but rather have made real efforts to directly engage patient groups in this process and indeed we consider patient engagement to be a foundation block of the entire project.
In real terms that has meant regular meetings with a dedicated patient advisory group for the project from across the city who have helped us shape everything from the communications material, approach and who hold us to account on work we commit to. In addition the Leeds Care Record team regularly updates the Leeds North CCG Patient Assurance Group which leads on the project for the city.
Furthermore, the team has also engaged with citizen and patient groups via routes such as:
· Leeds Care Record project team have met many GP Practice patient representative groups;
· Leeds Care Record public engagement events and involvement with Leeds Involving People, Healthwatch Leeds;
· Leeds Care Record posters, leaflets, TV artwork, in GP practices, hospital waiting areas (co-designed);
· Leeds Care Record media coverage in community newsletters, local press and BBC Look North;
· Leeds Care Record website, blog, video case studies from patients and health professionals;
· Leeds Care Record on twitter with regular updates.
So I hope you’ll appreciate that while we can always do more, the public and patient engagement has been a very important part of the initiative that the team have made real efforts to do well.
c) I have online access to my full GP record - and have had the opportunity to check it for accuracy (which I have done). What is the process for the individual health records being checked for accuracy prior to being shared by 3rd party clinicians (and others?) in Leeds. The best, and most accurate, resource to check for accuracy is the patient/citizen themselves - in my case, following corrections which I instigated, I am confident that me GP record is now accurate.
This is another good point. I’m pleased you have access to and have reviewed your GP record for accuracy. The Leeds Care Record benefits from the GP record, plus the hospital records, and we are working on information sharing from the Mental Health, Community Care and Social Care teams involved in the care of citizens and patients across Leeds.
Our current advice is to clinicians to feedback if they identify any inaccuracies in the Leeds Care Record, though I can reassure you that no major issues of this nature have come to light. Of course we should not rest there and as you rightly suggest the ideal mechanism is that patients are the best places to assure the quality and accuracy of information held about them in the Leeds Care Record. As explained earlier our first priority was to support healthcare professionals at the frontline with this initiative which is why we have taken this approach, yet we need to do more, extending online access to the Leeds Care Record to patients like yourself who want access. As part of our latest programme of improvements, in conjunction with other health and social care integration pioneers we are now about to begin this work, which I hope you may be agreeable to getting involved with? Your input into that process would be most appreciated and very valuable to us.
d) To what extent has the Patient Voice been involved in the process? The connected Care initiative should be patient focussed, but it seems that the patient (and the maximised safety of the patient) is just an 'afterthought' in the initiative.
As per my reply to b) I’m clear that patient involvement was not an “afterthought” but a key aspect of the Leeds Care Record initiative which I hope you’ll see from the work I’ve referenced earlier was quite comprehensive and something the team are quite proud of.
Just a few thoughts. The Leeds Connected Care initiative seems to be another example of the paternalistic and poor quality culture widely evident within the NHS (including within CCGs), which is failing to maximise the potential efficient use of resources (a culture which threatens the future of the NHS?)
On these points, which I’ll try to address, please let me begin by agreeing with you on the history of healthcare which has been over paternalistic in nature at times.
As we move into the 21st Century I believe we are entering a new age, where such approaches won’t work for much longer. Certainly we need to move towards a more shared approach to patient care, shared decision making etc, shared responsibility and support for patients to better look after themselves etc. The patient centred approach to the foundations of the Leeds Care Record are being built with that end in mind. We hope and believe this effort will improve the quality of care in the NHS and in collaboration with others across the NHS we are now deliberately sharing our learning and indeed our resources to help others on their journey towards Integrated Digital Care Records.
Does the culture of the NHS need to change? Absolutely.. Your rightful suggestion to put patients in greater control of their care is the way forward. In my opinion Leeds is now on a journey towards that end with the Leeds Care Record as one important part of the foundations being built.
Finally may I thank you for taking the time to critique our work, the challenge is good for us.
I can only hope that some of my response has helped reassure you about the Leeds Care Record programme. As we are soon embarking on related work towards the Personal Health Record aspect of this initiative, I would be pleased if I could encourage you to consider becoming involved in this and indeed consider becoming a patient champion for the Leeds Care Record too!
With kind regards