Subtheme 1: Need for common data standards “I think the first step actually is the ability for all the various electronic health records just simply to be able to share their coded data and make it visible in the other clinical systems. So that's a first step, just to make the coded data available and visible, and searchable so that population health decisions can be made on the best data available I think. Alongside that will be quite a lot of work to improve the quality of that data and reduce variation or variability in coding between clinicians and organisations.” – Participant 5 “I think if you get patient view insight then you've got better way of knowing what to do with the data once you've got it. At the moment, it's very clinically focused and there's not enough patient-led in there. I think we, as clinicians, are privileged to look at patient's data and talk to them about their problems, but we should reflect that we are looking at patient data, and it's about the patient story, so we should be able to, we need to look at it from the patient angle. Does the data reflect who that patient is? A lot of the time, I don't think it does. It reflects what someone else's point of view is, from that specific specialty.” – Participant 10 “However, as we progress, I think we'd need to tailor it to that particular role to make it easier and faster for paramedics or, and secondary care, I know they would like to delve deeper into certain records. […] The same may happen for a care home nurse who generally doesn't need very much data, but at some point something is a bit more complicated, and then they can go and find out a little bit more. I think the hindrance is working out how to work that ethically, that any provide-, anyone who's trying to help the patient can go into deeper data. […] But who should be able to go further, and how do you give permission to those particular people in those particular circumstances, because that's quite complicated to work out.” – Participant 10 “So if we had a fully national interoperable approach to data, then I would be able to change the way I work, because I would be able to look at your record, in confidence, and know that is a single version of the truth. I therefore do not need to do all of these things. At the moment, because I do not have that trust, and no one has that trust, we look at it, but we still do the full A to Z assessment.” – Participant 12 “It will be worth it, there's no question about that, but the thought of trying to do that for everything, you think, is it going to be actually possible? This is where we really need something at national level that maybe forces all the IT suppliers to standardise in some way.” – Participant 15 Subtheme 2: Rethinking EHR Systems Design – Usability, Automation, and Innovation “I was talking to a patient the other day who said, 'I'm useless with computers', while using her mobile phone. I said, 'Well, you are using a computer. The reason is that the interface is so good, and the software is good, so it doesn't feel like a computer. It's just something that works for you', and that's how clinical software should be as far as possible.” – Participant 6 “My kind of vision of it would be that if the information were more held according to standards, that you could have another layer of software on the top as the user interface, but it would pull all the information from the relevant areas in a context specific way with AI to actually interrogate what knowledge was held without a human having to actually go and rummage around in all the different bits of software, because we've got over 100 different applications in our Trust.” – Participant 6 “It's going to be good design, so getting the specification right, trying to future-proof stuff as far as possible, using as generic an approach as possible, trying to create common interfaces so that people moving from one area to another don't get confused and everything looks very similar and familiar, and they're less likely to get it wrong. A lot of effort needs to be paid to user interface. A lot of them they're really poor I would say, too many mouse clicks, too many menus popping up, dropdowns, things that are occurring all over the place. If you look at the well-designed websites, you've got rollovers and cascading style sheets, and all kinds. I don't know the coding for stuff, but there's a lot you can do to make the interface more attractive and more initiative, and more dynamic. Having to click on things to open them to read them, what they say, instead of just being able to roll over and get an idea of what's in there, all these kinds of little things that are very commonplace now, they need to be built into EHRs as well to save time. A lot of thought needs to be given in terms of how the information is linked together, and how people might want to search it, but also with the flexibility to search it in novel ways that maybe weren't in the minds of designers.” – Participant 6 “I think the job is, then, to make the user experience of the system sufficiently good so that isn't too burdensome for the clinicians. That's where the ability of the system to automate routine and clerical tasks becomes very important. It's always going to be more difficult to type something into a computer than it is to just jot down a few notes on paper; always. The system only actually makes your life any easier if it does the routine boring stuff that it doesn't really take a healthcare professional to do, and that the machine can do.” – Participant 13 “[It] is not just about convenience, [it is] about building the system in such a way that it encourages or even forces you to be safe. It protects the patient from us making a simple mistake like that. Whereas, if you don't, you say it's up to the doctor, it's up to whoever to use it safely. We all make mistakes, we all can be busy, we can all be rushed, we can all be tired. To me, part of the responsibility when we put IT systems in is to try and prevent all of that. It is not about convenience. It's fundamental to patient safety.” – Participant 15 Subtheme 3: Patient Involvement and Contribution to Health Data “I think our model previously was, 'These are the systems we need to do our job in the way that we want to do it,' but when you pivot things around and say, 'Actually, who are we really trying to serve?' It's the patients, and our citizens, and the taxpayer. Anything that would shift that focus would be really good from a patient point of view.” – Participant 8 “I think the other thing we need to do is we definitely need to pass the baton of care to the patients or to the citizen, rather than everyone just coming to hospital because that's the care they expect. That's where they expect to be treated. I don't think we can sustain that in the longer-term. […] There's a lot of data now that patients can collect themselves. I think it'd be incredible to use that in selected patients. That could help us in many, many ways, potentially; so, monitoring. People talk about devices, don't they? If you had a wearable that could monitor your vitals when you became unwell, you'd put this on. Then, if you were deteriorating, we could identify you sooner to do an intervention and that intervention could be very simple. […] In terms of our interventions, I think, we'd definitely use technology and selected patients to help them manage themselves better.” – Participant 8 “I think the clinical systems need to be open to the patient so that they can control, they can see what's going on with their data. It's written for patients about them, so I think the focus needs to be changed a bit more about that, in that direction. I think that's where, without getting the standard to join up what's already in there, it's quite difficult to do that.” – Participant 10 “I think the first change is just really getting the data out of other people's systems at the moment. You need to get the secondary care data up and going, you need to get the social care's data up and going. You need to get patients on board and working what they want, where their view, what's their vision of their system, how do they imagine their clinical records to look from an interoperable side?” – Participant 10 “What I would like to see is I would like to be able – say, in terms of interoperability, I want to be able to see what the patient's contributed, I'd like to be able to see - at the moment I don't have any patient contribution to any of my record. Actually, I believe the data is all theirs, not mine.” – Participant 1 “It's going to sound absolutely ridiculous, but I think it's about ownership of an accountability for care delivery. So for your condition. Let's say you have a diagnosis of blah-blah-blah. What are the associated actions to address that? Who owns them? Do you? Does your primary care provider? Does your secondary care provider? […] it's my record and you are allowed to have a look in it, but I own it and it follows me, as a patient. I think we can solve interoperability, it's a technical challenge-, big one. I'm still not sure it gets us to where we think it will, because I think you will persistently have separation of records. There will always be bits that we cannot share, because they are not codable. Actually, interoperability is a - it's a really fancy workaround for creating a patient-centred record.” – Participant 12 Subtheme 4: Greater Inter-Organisational Collaboration “Interoperability, it would be the ability to move information between the systems, whilst retaining its structure and all associated metadata. I want my blood pressure to look the same in both systems, I'll want to know it was a seated rather than a standing blood pressure, or something like that.”-Participant 12 “What I would hope would happen is that, actually, we would begin to realise that flow of data between systems, and that should be all important. A lot of it is the publicity in getting it to our politicians and various other things. Rather than saying there's a data breach, where my data was wherever it was, it's to actually get across to that level, to say, 'Actually, this is really important.' If your data is shared between all the various people who are part of your care, it can only improve your care. Actually, those patients want to help progress. They want their condition and what you learn about it, to help others, but you can't do that if you're working in silos.” – Participant 4 “There is a problem, so from our point of view, it is probably saying, 'Well, if you want to bring in a new system, it has to be interoperable with our Cerner EHR.' This is the main source of truth, so it has to be interoperable with that. You probably won't make an enormous amount of friends all the time because a lot of people will say, 'Well, this company doesn't want to do it, Cerner doesn't want to do it, and now I can't have my use in that.'” – Participant 4 “The other problem is I think, you don't always know what other organisations are already doing. The projects aren't being, aren't transparent enough, and you can't see what the user requests are for each project, what's their expectation of how it should work, and there's probably a significant overlap which most, a lot of organisations could, are just duplicating work... there doesn't seem to be a way of viewing what projects are ongoing or what stage they're at, who's involved with them, who to connect to, to talk about them. Or if you see a certain issue, or if you do this, then you're taking this out, and did you realise our workflow was dependent on that?” – Participant 10 |