Exciting times at PKB as we go live in Wales. We originally announced our recent live deployments in Wales here on our blog and now the BBC and others have also covered the full access to PKB being given to patients in Abertawe Bro Morgannwg University Health Board (ABMU) in a series of radio and television articles.
Wales online chose to lead with the headline “The app where you can access your NHS medical records” highlighting how empowered patients feel by having access to their own medical data.
The deployments were also covered by the BBC on both Radio and Television. Good Morning Wales talked about the go live on their morning radio show today where Professor Hamish Laing, chairman of the project board and former Medical Director for Abertawe Bro Morgannwg University Health Board discussed the benefits of using PKB for both patients and professionals.
Here is the interview with Professor Laing
Presenter: Coming up, the comedian who has won the prize for the best joke at the Edinburgh Festival. We won’t tell it, we’ll leave him to tell it, and we’ll see what sort of mood he’s in at half past seven in the morning.
First of all, I’ve been promising you more on this all morning, so let’s get it now. This new digital service that being trailed, or trialed, rather, at Princess of Wales Hospital in Bridgend, which will give patients access to their medical records on a smartphone or a computer. The Patients Know Best app holds information about appointments, test results, and care plans. It also allows them to get in touch with medics directly. Cardiac outpatient Deborah Isidoro, from Pencoed, started using the app a few weeks ago. She’s been telling us about her condition, and her experience with the new system.
Deborah (patient): Almost two years ago I had a heart attack, whereby I underwent an operation to have a stent fitted, and have been having ongoing treatment since that point. So preventative is extremely important from my point of view, and I think this system is going to be critical and vital to me. Everything is there in front of you, whether you want to send a message, whether you want to share your information, whether you want to look at test results. For example, this morning I had test results on the system that were dated the 30th of July, which I hadn’t seen or been aware of, because I hadn’t had an appointment as of yet. I went and had a look at them, and one of them I couldn’t remember what that specific part of the test was for. It gave me a link that told me exactly what that test was for, and it was in relation to kidney function. Again, it’s about giving you that information.
Presenter: Well, that’s one woman’s experience with this app. Professor Hamish Laing is the project lead for Patients Know Best, at Abertawe Bro Morgannwg University Health Board. Good morning.
Hamish Laing: Good morning.
Presenter: All right. Tell us more about this app, how it works, what’s in it.
Hamish Laing: Well, we’re really excited to be leading the way on this in Wales. It’s a partnership with our colleagues in the NHS Wales Informatics Service and Welsh Government. It allows us to make the patient an equal partner in their care. We share their information with them into an account that they hold, we share their laboratory results. In a couple of months time, we’re going to be sharing all the letters as well, that we write about and to them, and their outpatient details. They can then choose who they would like to share that with. So they could share it with a family member or a carer, or a specialist they see somewhere else. As you heard, there’s also a function for patients to upload their own information. If for example, they measure their blood sugar at home, they can upload all those results, and they can message a clinician in the clinic, perhaps a specialist nurse.
Presenter: I can see the benefit … and I think you can put your Fitbit on it as well, can’t you?
Hamish Laing: Absolutely right, yes. Hundreds of devices.
Presenter:: Yeah, lots of things. I can see the benefit that you might get from seeing how much activity people are doing, or putting in their information about blood sugar. What benefit do you derive from simply giving the information to the patient?
Hamish Laing: Well I think, people say information is power. At the moment, the clinicians have all the power, we have the information. By sharing it, it means patients can be equal partners. They can have the same information that we do, and help make the same, better decisions about their care. Also, it allows us to see information, as you say, that they upload, and it allows us to manage the patient differently, to look after them differently. Instead of having lots of routine appointments when you’re well, you can look after yourself, and we only need to see you when you need the skill that we can bring.
Presenter: Right. I mean, most people wouldn’t have the expertise required to be able to interpret some of that information, and some of that data that they’re being presented with. I can foresee situations where a mix of bare facts and data and Google could create some very difficult situations, couldn’t it?
Hamish Laing: Well the first thing is that this information is the patient’s information. We should be sharing it with them but we need to do it responsibly, as you say. As you heard, the app has a feature that allows you to try and understand about a test. It takes you to a website to explain it. We’ll be uploading videos for some patients, to tell them more about their condition, and they can always message the specialist nurse to ask for advice. The experience elsewhere of using this is not as you describe. People feel empowered, and they wish to ask their clinicians more about their condition. So we have a responsibility to make sure they do know what the relevant tests mean, and what’s good and what’s bad.
Presenter: Has there been a rise in people not accepting a diagnosis or prognosis they’ve been given by a medical professional, on the back of it, “I’m seeking a second opinion”?
Hamish Laing: No, I don’t think so. I think that some patients, of course, already do that. Actually, it helps them to understand why we’ve come to the decisions that we have, and to be able to participate better in that decision making. It’s also a kind of safety net. So if we miss a result, or we don’t follow something up, the patient has got a copy. They can say, “Shouldn’t I be being seen because of this result?” So it’s safer as well.
Presenter: Please don’t think I’m trying to dismiss this idea, in looking for concerns. That’s my job.
Hamish Laing: Of course.
Presenter: One other thing that occurs to me, is that when you have all this information, which is available publicly and it’s in a cloud, that there may be a risk, a security risk. We’ve seen all sorts of clouds being compromised and information being compromised. Is there any increase in that risk, by making it publicly available?
Hamish Laing: I think that’s a very fair question, and one of the things that we’ve spent a lot of time getting right before we launched the app three weeks ago. It’s been through all the information governance and security clearance as you would expect in NHS Wales. The information is held in the cloud in an encrypted way, and it can only be de-encrypted by the clinician or the patient, or the person they choose to share it with. So we think it is very safe. It meets all the highest levels of security, and there certainly hasn’t been any problems that we know of elsewhere, of that information being compromised.
Presenter: Okay. Thank you very much for being with us. We fully understand it now. Thank you very much, Professor Hamish Laing.
There was further coverage later on in the day with the CEO of PKB, Mohammad Al-Ubaydli being interviewed live on the BBC Wales Drivetime radio show with the opportunity for listeners to call in.
Here is the radio broadcast
Presenter: A new smartphone app for patients to track their progress is being trialed in Bridgend. It gives patients access to their medical data, test results, appointments, and can enable Skype consultations with consultants as well. The app is called Patient Knows Best, and cardiac outpatient Deborah Isadorah from Pencoed, started using it a few weeks ago.
She was telling us about her condition and her experience using the new app.
Deborah (patient): From my own perspective, the preventative point of view is extremely important. Having been so young when I had the heart attack, I had a stent fitted. It does have a lifetime, so preventative is extremely important, from my point of view and I think this system is going to be critical, and vital to me.
Presenter: Well, we can speak now to Doctor Mohammed Al-Ubaydli, who’s the Chief Executive of Patients Know Best, the company developing the new app. He’s in our Cambridge Studio now. Welcome to the program.
Dr. Mohammed Al-Ubaydli: Thank you for having me.
Presenter: So tell us about it. What does it do?
Dr. Mohammed Al-Ubaydli: As far as a patient’s concerned, it’s a website that they log into. So as Deborah was saying, she logs into it, she sees her test results from as far back as 10 years ago, if she’s in Wales. And then she can use that to work with her team. She can message them online, without having to come to a face to face appointment.
You can also have care plans. You can connect your devices so your doctors can see your activity from home. You can document your symptoms from home. So it really allows you to understand your health and to work with everybody helping you, looking after your health, wherever you are, without having to travel and use up resources.
Presenter: And I can see why that would be a good thing for an overburdened institution but sometimes, presumably a face-to-face conversation must be better for patients than doing everything remotely, surely.
Dr. Mohammed Al-Ubaydli: It is, and a lot of this is about freeing up capacity to focus on those patients in those situations. So a lot of appointments were ‘just in case’ appointments, where actually, the patient doesn’t need to be there. They’re just going there as a courtesy to say they’re well. And the patient needs to take half a day off work for a 10 minute appointment. If you get rid of those appointments, you free up capacity for the just in time appointments, where the patient’s facing an immediate need and needs that face to face, needs the examination, and needs the cooperative team around them.
Presenter: So what sort of reaction have you been getting from patients who have been trying this in real life, as it were?
Dr. Mohammed Al-Ubaydli: Well, the patients always like this. They like the convenience of seeing their own information and the convenience of working with the team. And then over time, they build up the capacity of understanding their health and looking after themselves, without needing an appointment all the time. What’s interesting is how many patients like it, but how often the professionals think that not all patients would, but actually, it’s only for the healthy and wealthy. When they consider the patient, pretty much everyone has a phone. Actually, pretty much every patient wants to have this, and it’s about offering this as quickly and as widely as possible, for them to make use of the system.
Presenter: Right, okay. And obviously, it relies on everything to work well, and we have seen stories occasionally, haven’t we, about the rather old IT systems that the NHS is relying on. These things are workable and sustainable, are they?
Dr. Mohammed Al-Ubaydli: A lot of what we do is about building on top of those existing systems. So they’ve got long term infrastructure. It’s about taking those data points and then making them visible to a patient in a user interface they’re used to. It’s on their phone. It’s convenient. They can see it. They can understand it. So it’s bringing the existing infrastructure of the institution and marrying it with the cutting edge technology that the consumers and the patients have.
Presenter: And is it empowering for patients? Do they feel like they have more control?
Dr. Mohammed Al-Ubaydli: It starts with the name, and we’re not saying all patients know best, but we want to make sure they do know best by the time they have the information. You can’t know what’s going on unless you have the data, and so we give you that data as soon as it’s available, and we show it to you in a safe way. And then you can consult with your clinical team, so you can get all the advice you need on making the decisions to support your health. And what that ends up doing is the patient feels more and more confident to look after themselves. For the majority of the year, they exist without being able to see a doctor. It’s the patient who’s taking the medication. It’s the patient who is injecting themselves, who’s doing the exercise, changing their diet. And if you give them the data, then they make better decisions and make better actions.
Presenter: Thank you very much for joining us. Doctor Mohammed Al-Ubaydli there, who is the Chief Executive of Patients Know Best, the app which is being trialed at the moment in Bridgend.
And finally PKB was also featured on the 18:30 BBC Wales News television programme where the use of the system in Wales was comprehensively covered.
Here is the BBC News coverage
Presenter: The headlines. A new digital health service. Patients like Deborah in Bridgend are given access to their medical records via a smartphone or computer. And a street in Caernarvon Town Centre is evacuated as fire crews tackle a blaze at a shop. We’ll have the latest.
Presenter: Hello, good afternoon. A new digital service is being trialled at the Princess of Wales hospital in Bridgend which gives patients access to their medical records on a smartphone or computer. The Patients Know Best app holds information about appointments, test results, and care plans. Geraint Thomas reports.
Geraint Thomas: From banking apps to weather forecasts, a whole host of services are accessible at the end of our fingertips. And now, for the first time in Wales, that’s being extended to the way we get treated on the NHS. Patients Know Best provides a range of services, from providing appointment information to giving patients their latest test results.
Deborah (patient): The notifications tell you if you’ve had any new test results that have actually gone online onto your profile.
Geraint Thomas: Deborah is one of the first patients to use the app at the Princess of Wales hospital. It helps with her ongoing treatment, after she had a heart attack two years ago aged just 49.
Deborah (patient): It’s vital week-by-week for me, to be able to view my results, because I have blood tests put on the system almost weekly, whereby I can look at them, I can ask questions, I can have my questions ready for my appointments. So, it is critical.
Geraint Thomas: As well as viewing test results, the app allows patients to get in touch directly with medics. This is proving especially useful when it comes to managing Parkinson’s treatment at the hops.
Louise Ebenezer (nurse specialist): We’ve got patients that are very complex, that may need longer appointments. So, the patients who are very stable, we can see once a year and they can message us more frequently using PKB. And, the patients who are more complex can be seen more frequently until they’re stable again.
Geraint Thomas: But, with such sensitive personal information, security is vital. The creator of the system says keeping the data safe is a priority.
Dr. Mohammad Al-Ubaydli: We started in 2009 with the NHS Secure Network – were the first ones to get inside it and be able to take data outside of it because of our security. And then, in Wales, we’ve gone even further checking and due diligence around the security, because they’re taking a national approach to this. So, security’s at the heart of handling all that sensitive data.
Geraint Thomas: The service will be spread out across a range of treatments in the Abertawe Bro Morgannwg Health Board area over the autumn, and it’s likely other health boards across the country will be keeping a close eye on its progress.