Featuring Director of Technology for NHS England, Beverley Bryant, PKB CEO, Mohammad Al-Ubaydli, and UCL researcher on 3D printed drugs, Dr. Stephen Hilton, this Tech Weekly podcast from The Guardian explores how the NHS is moving forward with its digital health plan.
Alex Hern: Back in summer, remember that? The head of Patients and Information at the NHS, Tim Kelsey, announced a plan for a digital savvy health service that would save up to £10 billion by 2020. A big plan. But fast forward to the beginning of 2016, and Kelsey has moved on, leaving his grand ambitions for faster fitter and more high tech NHS behind him. So where does this leave NHS’s digital plan? This week we have an NHS special on tech weekly as part of the guardian’s month long project covering the National Health Service in all its many facets. we’ll be taking the temperature of the NHS’s digital health with the director of technology for NHS England Beverly Bryant. Dr. Mohammad Al-Ubaydli from Patients Know Best and Stephen from UCL. Joining the tech desk is my compadre, Dr. Samuel Gibbs (not that sort of doctor) who has been looking into this for our NHS season. I’m Alex Hern and this is Tech Weekly from The Guardian.
Alex Hern: Three years ago, Jeremy Hunt announced his challenge for a paperless NHS by 2018. This meant that in practice more patients could access their online records, referrals could happen via email rather than letter and records could follow patients across any part of the NHS or social care system without getting lost between the cracks. Now we have the pledge from NHS England to be paperless at point of care by 2020. But what are some of the implications of putting such an enormous quantity of confidential patient information online? First of all, Sam, you’ve been writing on this for the NHS project. Can you sketch out the landscape for us on this. How has the scheme progressed and what are some of the pitfalls it’s faced?
So right now you may assume that when you head into a hospital that one everything you’ve done in the NHS or have been treated by seem a doctor had any sort of care is at the fingertips at the doctors that are hoping to put you right now. That is the case in some places but not always and not as quite as reliably as you assume as a patient on the outside. And basically the paperless at patient care by 2020 is aiming to put that right and is a good thing that is definitely something we should be going for. One thing you might know right now is the summary care record, is the thing that your GPS hold, the GPs are the holder of your data as a person of the NHS. The summary care record is one of the first things to be pushed forward into the digital care era and that seemingly works well enough that if you go into your GP your GP does hopefully remember you. Now hopefully that will extend to the rest of the NHS. The problem is that we’ve seen the NHS go through several attempts to reform go forward and move forward especially on the IT front and there have been problems, understable. it is a very very complex organization.
Alex Hern: Beverly Bryant, NHS director of digital technology. What sort of benefits patients will get when this scheme is finished other than having to speak to their doctors less?
Beverly Bryant: Well the main job here is to allow a faster and improved diagnosis, improved safety, for ex electronic prescribing because the NHS organizations are joined up between diagnostic testing, outpatients, discharges, social care etc… Being able to get quickly access to all the information about a patient, that’s the driver.
Alex Hern: I mean some people listening would be obviously thinking “How hard can it be?” if it’s already there for GPs. It’s just computers. What sort of hurdles do you have to cross to do this sort of thing?
Beverly Bryant: Well we’ve tried to do this in the past and we have not done a great job to be honest. Our attempts have varied in the early 2000s and where we just threw money at it and there wasn’t necessarily the expertise in the NHS to deliver it. Then we did the national programme for IT and the problem there was that we effectively imposed a technical solution on the NHS and the clinicians, doctor and nurses, didn’t have ownership of their solutions.
Alex Hern: So in other words docs and nurses arrived at work one day with a computer system and were told to use and hated it.
Beverly Bryant: We had a mixed response. Some picked it up, some didn’t but broadly we didn’t really get the clinical buy in to the whole process that is fundamental to making this a success. So we’ve changed our approach.
Alex Hern: So what’s different this time?
Beverly Bryant: The approach this time is to say we won’t tell you what to buy. We won’t tell you how to operate. We have a federated system: local organisations. But we will help you. We will use money. We’ve been successful in getting a spending review settlement to start putting some investment in this and we’ll also start to define standards that you have to adhere to electronically. So we’ll set them through our commissioning and regulator levers conditions that hospitals and organisations have to meet for a digital future for their patients but we won’t tell them exactly how to do it. That’ll be up to them to decide for themselves.
Alex Hern: Dr. Al-Ubaydli, you’re the founder of Patients Know Best. Does this sound hopeful to you? Do you think this could be the time the NHS cracks the nut?
Dr. Mohammad Al-Ubaydli: This should have been done earlier. It’s benefit of everyone in the system for everyone to go digital. If you imagine any other sector not being digital it would be far less efficient, far less effective. The problem for the health service – not the NHS but health service in general – medical data is far more complicated than any other domain of expertise so the computer systems, the IT systems have not been ready in the past and to build the right computer systems you have to have the users buying in, building with the programmers and that hadn’t happened in the past as well. So Beverly is describing the problems the UK had but it’s not like any other country cracked it either. Everybody has been struggling and the UK is the first in the world to have GPs with electronic record back in (you mentioned the 90s). The first one is back in 1975 – first GP surgery in the world. It’s a struggle and the UK is going through it but it is not an easy problem to solve.
Alex Hern: Now for the most part we’ve been talking about information sharing within hospitals and between various care providers. Dr Al-Ubaydli, you also think that an increasing amount of that data should be shared with patients themselves. Why is that?
Dr. Mohammad Al-Ubaydli: First of all it is the right thing to do. It’s my body, it’s my data. I ought to know what’s happening. You ought to tell me – as a person with a long term condition myself – I want to know what you’re doing to me, but also the healthcare system needs me to know. 70% of healthcare spending is on patients who have long term conditions – have an illness for a year or more such as diabetes, asthma, heart conditions. If the person with the illness doesn’t understand or agree with what’s being done much of that money is wasted. We’re talking about the doctor or the GP or the hospital doing something to the patient. Maybe that’s true for one hour in the year but the other 8,000 hours the patient is doing things to the patient. They’re the ones taking the pills; they’re the ones changing their exercise; they’re the ones changing their diets. So if they don’t understand and carry out things correctly as a provider of care themselves then much of that money is wasted and they can’t understand unless you give them the data so they’re a key stakeholder to know everything that’s happened to the patient.
Alex Hern: It’s easy to say share the data with the patient but if you handed me the 80 pages of medical record that came out of an appendectomy I wouldn’t have much to do with that. I’d thank you and carefully recycle them, hopefully after shredding them. I mean in practical terms what can people do with this data other than stare at it and turn back to the doctor for help interpreting it?
Dr. Mohammad Al-Ubaydli: Remember we’re going for paperless NHS so we’ll give you a digital version.
Alex Hern: Securely digital…
Dr. Mohammad Al-Ubaydli: When you have structured digital information, then we have tons of digital tools to make it intelligible to a patient. If you say a medical term to a patient 20 years ago they would not have understood it. Today they’ll know within a couple of seconds from a Google search or a Wikipedia search exactly what that term means. After a few minutes they’ll learn more about their condition. After a few days, because they’re stuck with that condition, they’ll start become experts in their own disease. if you look at rare diseases, the patients know more than most doctors do about their illnesses and finally even if you’re not interested or able to read those papers, someone in your family who loves you is interested. Very often they are very motivated. They just never had the chance to look at the information with your permission. There is no other scalable way of solving our health care problems for the next century if it’s only the professionals who are doing things. Even if we have the money, which we don’t, we don’t have enough professionals. It has to be the lay people – the patients and the carers who are taking ownership of taking care of themselves.
Alex Hern: Beverly, is this sort of information sharing even on the NHS’s roadmap right now?
Beverly Bryant: It is. We think that giving patients access to their records could really help people with long term conditions. That’s the area we’re focusing in on. We don’t see that the patient having their record and trailing that around the system is the answer. I think we owe it to our citizens of England to know everything about you across the system. I think wearable devices and detailed patient records can really change the relationship between the GP and the patient.
Alex Hern: Words like open and data sharing. Words that people might feel comfortable hearing next to words like private medical information. How do you keep that information secure while sharing with the people who need it. How do you convince patients that random people won’t see confidential medical information?
Beverly Bryant: So the information that we’re going to architect and design that will transfer across care setting will always be done in a secure way. We have a secure network; we have a secure email service. And the standards we expect our software to meet is rigorous in that regard.
Alex Hern: Sam, you’ve looked into the security of the systems. Is that something that you think can be done?
Samuel Gibbs: It’s going to be a challenge. One of the things I think that it has going for it is not having data all in one massive lump is a good thing and as I understand it that’s the goal. It’s not going to be one massive database. But one thing I was interested to learn about is how the computing standard of the NHS is going to deal with this. It’s a notoriously backward system. You often have many many computers that almost outlive anything else. How are we going to bring up the computing standards to meet the requirements to be able to facilitate this seamless digital transition?
Beverly Bryant: So the computing standards are set.They’re industry wide; they’re agreed. The difficulty is ensuring adherence to them in a distributed system where we reduce the risk because we have locally held data. We just have to make sure that everybody reaches the level of adherence around those technical and safety standards and that’s again where the commissioning and regulator levers come in to say we’re going to fund the technology for the next 5 years but in return you need to adhere to a standard.
Alex Hern: So, we’ve heard how the NHS doesn’t have the greatest track record when it comes to adopting new technology, and as admirable though it is getting hospital connected to Wifi and getting patient records online doesn’t seem particularly cutting edge to the rest of the tech world but one technology which could have vast potential for the future of healthcare as Beverly said is wearables. These devices could make it easier for health professionals to get reliable data on medical conditions like diabetes or asthma. NHS Medical Director Sir Bruce Koegh joined our sister pod Science Weekly yesterday and is clear on how important wearables could be come for the health service.
Sir Bruce Koegh: In my mind, I can see a time where someone who is prone to go in and out of hospital with heart failure is sitting at home and wearing some sort of device and they get a phone call and an expert says “Mr. Jones it looks as though you’re going into the early phases of heart failure again and we’re sending someone around to monitor you or give you an intravenous injection or diuretic” or something like that. That is going to change things dramatically.
Alex Hern: Beverly, you hold hope for wearable devices being integrated into the NHS. How do you see it helping. What sort of devices are we talking about. Are we talking about the general consumer wellness monitors or far more specific clinical devices?
Beverly Bryant: We’re not at this stage looking at general wellness monitors. We don’t think that’s our priority but rather wearables that integrate with the record. I think in America they have gone mad on stand alone wearable devices that are not tethered or integrated to the record that is held clinically. I think the two way interaction of between uploading blood pressures, blood monitor, etc… as part of a care plan is something that we’re look at. I want to move at a reasonable slow pace with this. We need to bring the clinical community with us and we need to test the validity and the clinical efficacy of it. In the studies we’ve already done, patients in particular are saying that it’s so much more convenient for them to not have to be going in on three buses to get to a rural GP surgery – to have a test where they could actually do it on a device that automatically uploads.
Alex Hern: And Dr. Al-Ubaydli, you hold hope for this as well?
Dr. Mohammad Al-Ubaydli: Yes. One of the things we do in Patients Know Best is that all of the devices that you get off the shelf that are marketed as wellness devices, because of the legal team, they don’t want the litigation aspects of a formal medical device so they start with consumer device. But actually there are lots of useful data you can plug into the patient’s medical record so it flows from the patient’s home into Patients Know Best into the doctor’s record. I give you two examples of where that is clinically useful that was a surprise to me to hear about. If you got a Fitbit that can track your sleep, if you compare that at the moment to someone with heart failure where you come in every few months and the doctor asks how is your sleep because whether you are getting up at night to go to the toilet affects their interpretation of how well their pills are working. So if your Fitbit can actually show over 6 months you’re waking up this many times every night, it’s a much better conversation than it’s alright doctor or not so well doctor. You look at water consumption. I saw this water device that tracks how much you drink. Initially when I saw it and thought it’s for Californians who are obsessed about how much they’re drinking – whether they are drinking their 8 liters. But actually if you’re on chemotherapy you have to drink lots of water but often you’re too frail and you forget to drink the water. If you’re on dialysis machine you must not drink more than a liter of water. So the colors on the device tell you when you’re drinking as much as they want you to or drinking more than they want you to. So when you bring it back to the clinical pathway, it’s very powerful. These devices are not only cheap enough to give to lots of people but they are also consumer friendly. People will use them as opposed to traditional medical devices.
Alex Hern: But the other thing traditional medical devices have that is different from consumer ones is a much more rigorous quality testing. When it comes to an Apple watch or a Fitbit, they’re a bit flaky in terms of whether they recognize whether you’re asleep or just watching telly. Is that good enough for clinical setting? Or are we talking about the sort of data where scratch information is good enough.
Dr. Mohammad Al-Ubaydli: It’s a spectrum. If you look stuff like blood pressure, you wouldn’t prescribe based on your home blood pressure monitor that is 100 pounds but if you want to monitor blood pressure every few months and avoid white coat hypertension, where just being measured by your doctor scares you and brings up your blood pressure, and if you then look at the trend, that trend is very useful. When it comes to prescribing you will come to your doctor and they will do a formal blood pressure measurement.
Alex Hern: Beverly, is offloading some of these measurement onto patients is that a good thing? It sounds like it saves money but are we going to get worse quality measurements or are we going to have much happier patients?
Beverly Bryant: I think at the moment there is quite a lot of variability in the technology across some of these advertised as the same or similar wearable devices. As the NHS we don’t want to leave it chance about what is accurate or not. We want to test it vigorously. So we’re going to introduce apps, not accreditation like count marking, so there will be a number of wearables and apps that we trialed them and we’re putting them on NHS.UK apps library to say if CCGs or GPs want to recommend them to their patients, they’ve been through a test and compared to others they have the NHS badge associated with them. That’s something we’ll be doing over the next couple of years because as a national body it’s important that we don’t leave these to chance.
Alex Hern: At a consumer and one criticism of all of this categorizing has been that people measure everything and learn nothing. Is there a risk that the same will happen when that data is fed into the NHS that you will have an overwhelming amount of information on patients and that it will actually increase data storage costs and make it harder to store?
Beverly Bryant: We need to control it. The last thing we need is to be bombarded our GPs with information that is like a tsunami. It needs to be controlled and they need to decide in conjunction with the patient who might be best to use some of these technologies as part of a care plan and an ongoing dialogue. If it’s useful for the patient and the GP then I believe it’ll hit off.
Alex Hern: After the break we’ll be hearing from Stephen Hilton on how the future of pharmacies will be 3D printed.
Alex Hern: If digital records and wearable health devices are already fixed in the sights of the NHS, what is the technology on the horizon that can help save the health service. You’ve heard of designer babies but we could have designer pills. Medicine that can use 3d printing technology to tailor drugs to your individual needs be that your size or your weight or even if you’re into that sort of thing to look like pepper pig or super hero characters. Sam, the pepper pigs ones could be for you, I’ll keep the superheroes. The possibilities for this could be massive, giving pharmacists the ability to tailor and print out customized drugs within the decade. One of the people involved in this research is Dr. Stephen Hilton of the UCL school of Pharmacy.
Dr. Hilton, explain how this works for the layman.
Dr. Stephen Hilton: Well, 3D printing is a new technology. You can see things; you can make things. Whatever you can imagine ultimately you can make. That’s the idea behind it. Any shape, any size, pepper pig or superman, all these things are possible really.
Alex Hern: So printing tablet in the shape of superman is first something that you find in a club late on a Friday night but also you can see how it’s useful to get kids for taking pills but hardly the sort of revolutionary technology that will transform the health service.
What sort of things can they do to take it a bit further?
Dr. Stephen Hilton: I think 3d printing is not just about printing pills. It’s a technology as a whole so you can print out models of diseases as well to help doctors understand things. Saving money doing things in a better ways less waste. All these things are possible. For tablets say my weight slightly increased throughout Christmas you can then monitor that and work out the dose required to match that patient.
Samuel Gibbs: So Stephen our listeners will be intimately acquainted with 3D printing because we’ve been talking about that for about the last 10 years or something like that. The hype cycle has been gone and we now actually have products. But when you buy a home 3D printer you buy a filament, you stick it in and it’s basically like a glorified glue gun laying down layers. How does it work for a drug?
Dr. Stephen Hilton: For a drug, it’s basically the same. When you look at the colors that are coming out of the printer, they are an organic molecule. They are a compound, essentially a drug. So different colors could be potential drugs so as you’re printing a color it can be a drug; your dose, your size your shape of a drug or medicine that you want.
Samuel Gibbs: When you or I take a pill from off the shelf, typically it’ll have some sort of mixing agent or a shell or a coat to target to the area in the body that it is required. Not everything needs to be dissolved in the stomach; some drugs need to go further. How does that happen in the 3D printing scenario?
Dr. Stephen Hilton: Part of it is different coatings. Some have single head printers or double head printers so you can build your own shells around the drug that you want to actually incorporate into the tablet and dissolves in the stomach leaving the drug to release later in the system.
Alex Hern: So in terms of the pharmacies that will be incorporating this tech, is this something which to most people just be a big gray box at the back of the Boots where they go pick up their medications or is it something that will be much more integrated into their experience with the healthcare system?
Dr. Stephen Hilton: At start, it will be a big gray box at the back. The control is there at the NHS where they want to maintain the standards- the right dosing of the patient. But longer term we could see them at the patient homes, monitoring how they actually tolerating the medicine, monitoring how well they are absorbing it; the pharmakinetics behind it. Also, they could print out the next dose based around how much drug is already in their system.
Alex Hern: When it comes to 3D printing outside of healthcare, one of the flashpoints for it has been intellectual property. People have tried to print off figurines for games and have been sued by game companies. People have tried to print off Mickey Mouse and have been sued by Disney. Are there the same issues in the healthcare system? Can I just go and print off a patented drug?
Dr. Stephen Hilton: You can’t really print off a patented drug because you have to buy the precursors to make those and that’s not possible. Now the designs will be patented so that where the challenges comes but new designs are always outside a patent space so ultimately you could design a tablet with a different character on it which would be outside a patent space.
Alex Hern: Mohammad, this interacts quite strongly with your area. Access to patient records can presumably help the pharmacies which would be tailoring 3d printing drugs to tailor them all the better. Is that the dream or is that something already on the cusp of happening?
Dr. Mohammad Al-Ubaydli: We already have examples of this happening in everyday medicine, especially when you take into account the genetic sequence of the patient so not just the size and situation but their genetic properties. So antibiotics that are very powerful don’t get used enough because a small number of the population would go deaf if they have that gene. So if you can test for that gene in advance before you give that pill to the patient, you can decide actually that this patient won’t be affected by it so go ahead and give them the benefits or actually this one will be at risk so don’t give them the medication. If you look at cancer and chemotherapy each of the drugs works depending on the mutation that is in that particular cancer. You can sequence that and check it in advance, figure out which ones will get the benefits – great give it to them – and which ones won’t so you save them from all the side effects of chemotherapy. That personalization is very powerful.
Alex Hern: Stephen, the end stage, the science fiction future that you’re suggesting for us is that severely ill patients, maybe even just slightly ill patients, would have a 3D printer in their home churning out wonderfully personalized medicines which vary the dosages that their weight fluctuates every morning. How long until we see this or the basic steps towards this coming to market?
Dr. Stephen Hilton: I think we’re already starting to see that. The printing market has changed enormously. Printers are coming down in prices enormously. Again, you’ve seen that the wearable technologies has been a 4 or 5 year revolution that is really come in place now has starting to be everywhere you see it. 3D printing is about five year behind that and we’re starting to head towards that with medicines now. You’ve seen the first ones come to the market already.
Alex Hern: Is this a new frontier for the pharmaceutical industry to innovate or is this something happening outside of the industry. You work at UCL, you aren’t working at GSK but are they as excited about the technology as you are?
Dr. Stephen Hilton: I think excited but also scared as well. There’s lots of potential but also lots of challenges as well. So you’ve seen a lot of small companies starting up as we’ve done ourselves to try and bring this forward and that’s like an open market for ourselves in that respect.
Alex Hern: Thank you very much. That’s all we have time for…