The future of research: Can research save the NHS?

Episode 3 of the NIHR podcast series discussing the big research challenges facing healthcare, hosted by Dr Sanjay Ramakrishnan, Research Fellow in Respiratory Medicine at the University of Oxford . Every week, UK clinicians with experience of research discuss the tough questions about research.

In this episode,  Sanjay is joined by ophthalmology registrar Dr. Mital Shah,  Sofia Cerdeira MD PhD, clinical lecturer at the University of Oxford, and Dr. Tanya Baron, an emergency medicine consultant and former GP, to discuss how research impacts on a healthcare service still under heavy pressure from Covid-19 and a care backlog.

The views and opinions expressed in this podcast are those of the host and guests and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.

Transcript

Sanjay Ramakrishnan  00:00
Welcome to this special podcast series from the National Institute for Health and Care Research about the future of research. You'll be hearing from five clinicians who are the current Thames Valley and South Midlands Clinical Research Network fellows. We will be discussing the big research challenges facing healthcare. I'm Dr. Sanjay Ramakrishnan. I'm a research fellow in respiratory Medicine at the University of Oxford. And over four episodes, I'll be asking my colleagues the tough questions. Are we getting trial participants who are representative of our diverse population? Is our research workforce ready for the future? Is it all going to be online? Join us to get answers to all these tough questions.   The title of the podcast today is The Future of Research: “Can research save the NHS?” We know the NHS is continuing to shoulder the burden of COVID and is trying to catch up with a care backlog. Is research a burden or a knight in shining armour? To discuss this topic, I'm joined by Mital, Sofia and Tanya. To start with can I ask each of you to introduce yourself to our listeners.

Mital Shah  01:04
My name is Dr. Mital Shah. I'm an ophthalmology registrar. I currently work in the Oxford Eye Hospital and over the last few years, I've been involved in the running and delivery of a number of different clinical trials. My research interests focus on the use of retinal imaging and artificial intelligence and ophthalmology.

Sofia Cerdeira  01:22
Hi, my name is Sofia Cerdeira. I am a clinical lecturer at the University of Oxford and a doctor at the John Radcliffe hospital. I look after pregnant woman and I have a particular interest in maternal medicine. And I do research in preeclampsia, which is an hypertension disorder of pregnancy.

Tanya Baron  01:43
Hi, I'm Dr. Tanya Barron. I'm an emergency medicine consultant in Oxford and have previously been a GP. I'm involved in various trials with an emergency research and chair our local patient and public involvement group. My passion is to make research accessible to everybody and to ensure as a normal part of patient care.

Sanjay Ramakrishnan  02:03
Thank you for joining all three of you. I want to start with some facts. The last report looking at this from the NHS is from 2018/2019, supported clinical research activity generated about 2.7 billion pounds of gross value added to the UK economy an estimated 47,500 full time equivalent jobs, direct income from the NHS. So this is directly money going into the NHS, commercial clinical trials and NHS delivering those generated 355 million pounds of income to the NHS, in a total estimated cost saving was 28. 6 million pounds by where trial drugs were used instead of standard drugs. Knowing that can research save the NHS, Mital?

Mital Shah  02:50
Yes, I think it can. And it will and it should. You've kind of highlighted really, really clearly the financial benefits and the impact that research has not only on the NHS, but on the wider UK economy. And in addition to that, we know that patients who are treated at hospitals or hospitals that are research active have better outcomes and have reduced mortality. And they also tend to find that if they're admitted to more research active hospitals that their patients have more confidence in staff and tend to be better informed about their condition and any medications that they may be taking. So I think I'm definitely trying to increase research within the NHS and increase research capacity with the NHS will have both financial, positive financial implications, as well as implications or better outcomes for patient care.

Sofia Cerdeira  03:50
Yeah,  we may be biased because we all of us have a particular interest in research, but I mean, our interest is actually the impact that it can have in the patient's lives, on the patient's outcomes. And, you know, through research, this is how you can evolve and improve care. It's all about the patients and have a patient centred and patient centred approach. So, you know, by improving the research and research training that we give to allied health care professionals, that will certainly come back to the NHS improving care to our population, definitely.

Sanjay Ramakrishnan  04:39
COVID was a burden and is still a burden, but it also showed what can be achieved if we really integrate research into the standard care pathways. RECOVERY study is a great example. The simple innovation of that was to make the study use existing medications, existing care systems and randomising at scale at many hospitals centres, centres that normally don't recruit actively for research studies. And that showed that we could deliver new treatments within months of a brand-new disease coming into focus. 30% of all patients hospitalised for COVID-19 in the UK were randomised in a in a huge clinical trial, the RECOVERY trial. So, at what cost? Is that Tania what you were there you were on the front lines are you holding the charge at the right at the front you were there, what costs was that? Did it cost you, your team anything what was achieved and lost by making research right there at the front?

Tanya Baron  05:52
I think from our point of view from within the emergency medicine that it was really amazing to see. I think that it was just, it was just basically, of so many people coordinating the collaboration across different departments, everybody, the patient, the clinician, everybody had a vested interest in these trials. And I think that was the first thing that made a big difference. Everybody wanted to do something to help. Everybody wanted to be involved. And I think seeing that all happening, and happening so quickly. And in fact, I think Oxford was one of the highest recruiters across the whole of the UK for RECOVERY, and actually was really, really great. And our department is research active. But having the resources that we had put into the front line, really, at that time, was probably not seen before. And I think unfortunately, it's probably something that's not sustainable in the long term. Because people, obviously then other research studies were actually neglected, and to prioritise the COVID studies, and probably rightly so at that time. However, that's not a long-term solution. But it did make a huge difference. And it was really, really impressive to see. And it's really interesting, speaking to our research nurses who were involved in that, actually, and definitely something, possibly for another podcast in the future is to hear the stories of how they felt themselves undertaken that research on very sick, sick patients. And yeah, but as I say, on the whole, I think it was a good experience. 

Mital Shah  07:38
I think it showed really, really well how, when everybody has the same goal, and when resources, I suppose aren't limited, what can be achieved. But as you kind of alluded to the other side of that, or the cost of that the pandemic in the research was lots of other studies being stopped, for example, in ophthalmology, essentially, everything came to a complete standstill on the research front and our research nursing staff were redeployed as we're a number of doctors, to other specialties. So it's important to remember that one, I think, when resource isn't an issue, we can do lots, but now particularly in a situation where we're coming out of the pandemic, and we're faced with big backlogs within the NHS, and potentially what impact that might have on research. And also, I think it's important there to think about, actually, how can research help us try to come out of that, either through innovative ways of working and, or looking at new sort of treatments and new approaches that might be useful and helpful and day to day basis.

Tanya Baron  08:45
Definitely think from an ED point of view or the way we, for example, take consent has changed. And that have happened very quickly, actually. And we have since then pretty much paperless consent. And that's come because of digital platforms were quickly updated, I suppose.

Sanjay Ramakrishnan  09:04
We also learned I think, like, like Tania was saying, we learned to use other things well. We learned how data was collected. The data form. You remember Tania, for the RECOVERY study was incredibly simple. You know, it's a website, you went there, you there was maybe eight questions, and it demystified and made it uncomplicated, the whole idea of trials. But by doing that, by just joining a study, we have improved the care of that participant even if they were randomised to usual care. There's a great paper that showed that people in the usual care arm of recovery would live more than if you weren't in any study at all. And yes, there could be some selection bias to that. But I think that itself is a good reason to perform more research in the NHS. Training is something Mital brought up so how we're going to have to really spread out this, this army that we mobilise to deliver that. But what particular things that we did we did them and did those nurses and healthcare professionals and doctors, other areas motivate members of your teams to do more research? How does that link in with the CRN’s goal of training more people to be research active? Any experience with that?

Tanya Baron  10:28
I think it certainly made other emergency medicine clinicians more aware of research as a thing, whereas before I think it always been something that people did but nobody really knew much about it. But I think when COVID struck, and actually we weren't as busy with our other normal patients at the time, and it gave people sort of something else to do, they felt that they were not just managing the patient who was unwell, but also able to help or identify patients for trials where they had previously not been involved in research. And I definitely think research is more, there's more awareness about research within our department since then,

Sanjay Ramakrishnan  11:11
You know, maybe that's it the NHS is for the greater good, but being part of research gives you a very concrete greater good that you're working towards. And that that is, in itself, a huge boost to our we can say, almost exhausted workforce, but it does give that concrete thing to look at. So we all agree, research is valuable for the NHS. Why then I'm just stirring the pot here. I'm making a controversial point, which should consent be opt out? Should everyone who comes to the NHS, which is already working to the greater good, try and do even more for the greater good? What do we gain by making research consent opt in? Especially? Yes, I know, you will talk about intervention studies, but especially for observational research, especially for data driven research, what do we gain by making consent opt in? Or what do we lose by making consent opt out? Sofia

Sofia Cerdeira  12:08
I think that if you're using an anonymized, if you're using patient data, patients should be aware and should be able to say, yes, I'm happy for my anonymized data to be used. And I think this is something that would be quite important to set up in a large scale. So that is just routinely collected data that we have, that we that we have sitting on our information systems. And if we can use that data to make some interrogations in order to improve service and departments  to do proper research with it, there would be great if you can create a system where the patients would be informed, that this could happen and have the possibility of opting out, , I think that could make a big difference that were quite, that would increase substantially the possibilities.

Mital Shah  13:13
I think it's always important to make sure we don't forget that ultimately, in both observational and for interventional research as well. Participants have the right and the option and they're able to sort of withdraw from studies at any point in time. So, I think while it's a noble cause to try to improve recruitment to research studies, make everybody both staff and patients more research aware, mustn't lose sight of the fact that currently, I mean, research is optional. People should be informed prior to taking part in any studies, as part of that informed consent process. They have an option to sort of decide if they really want to go anywhere or not.

Tanya Baron  14:05
It was interesting, because we actually brought a similar question to our PPI group, about whether they would be happy to have some of their old used blood that had been taken already for their medical care and stored for future use. And actually, there was some quite a mixed response because I, in my naivety expected that nobody would have any concerns about that. But interestingly, they felt that when they are presenting acutely, they might not be thinking, clearly might be unwell, not able to give their full consent at that time. And also there was anxiety over if they said no whether, they would get the same standard of care. And then went on to how would you assure people that their bloods had been disposed of at the end of the day? And how would you reassure people who didn't want to be involved to the samples wouldn't be used at all. So I wonder if using consent as an opt out, if it's planned in advance, and the same way that we were talking about carrying donor cards and things whether that might be a useful way or having a registry I guess, nowadays, things were paperless, but having some kind of way that people are not having to make these decisions when they come in unexpectedly.

Mital Shah  15:35
I think it's important to remember that especially in acute settings, I mean, sure, Tanya has more exposure to this than I do. But if someone's coming into hospital in emergency, they're unprepared, or even if they're going in, for a procedure or an operation or something, they're nervous, and to sort of be thrust upon at the last moment, with all this information to try to absorb that, digest it and decide isn't when they want to take part in, it may not be the most appropriate time. So I think certainly, that's something that, as researchers, you need to be sensitive about, to making sure that you're approaching past the appropriate time when they actually can take this sort of information on board.

Sanjay Ramakrishnan  16:15
And you mentioned about their time, it takes time, to research in fact, the most generous gift that our research participants give us is their time. And you also said about if we made it routine, do the participants know that their visits are going are taking longer? Because we made it routine, that they are part of research? Are we affecting their work? Are we affecting the likelihood of someone coming to you especially service in Oxford, from rural Gloucestershire, because they feel like they wouldn't have the time to spend when you're going to come here? How would we solve that? Do we have any suggestions? How do we make sure we are not overburdening? Participants who don't already know they're doing this extra

Mital Shah  17:04
I think here, information is key. That sort of similar to what Tanya's experienced with her PPI group previously, and their concerns about not knowing what's going to happen with the samples afterwards, in this setting, participants or potential participants may not be aware of what exactly what does that involve. And I think in a future where research plays a much more integral role within routine or standard NHS Care, everybody will be more informed. That's potential participants, healthcare staff, and actually knowing what might be expecting the kinds of things that might be expected, I think the unexpected can always be more daunting for everyone. So I think certainly one important thing to overcome to get to that point is, is getting people more informed about actually what it involves and what the potential benefits and the risks might be as well. So when they're coming in, it's not the first time they necessarily think about that. 

Sanjay Ramakrishnan  18:02
And another example brought to me recently was about, if we make it routine, we shouldn't underestimate how special that is, how special it is that our patients or participant and members of the public are donating the time and themselves to/for research. And if we make a routine, we shouldn't get to a point where we take it for granted that people will sign up. Approaching someone you know, in the emergency department is one thing by approaching even for planned operations. Should it be okay if I have an opinion on this, but should it be okay, that if we, if we approached the participant only on the day, when we could have approached them in advance and had the time to think about whether or not they want to join a study, even if it's observational? Is it? Is it ethical to leave it to the last minute, if it's something that we could have done earlier? So if you have, for example, someone coming in for you know, pregnancies, nine months, you can plan for something that's going to happen in nine months time, most of the time, nine months. Is it okay to ask them to join a study on the day of their labour when they could have done that, in advance?

Sofia Cerdeira  19:15
My experience is working with patients in labour is quite a difficulty that will be similar to Tanya talking about patients who have come into the emergency ward. But luckily, we have nine months to prepare in the pregnancy are patients that we keep on tight follow up and we are able to, to approach on several different times. So although it's not ideal, but I feel that we are in a better position than the emergency department with Tanya. And we can start giving patients the leaflets and they have the chance to think about it on the day or come back to us later on in one or two days. And we can always follow up. The experience that I get is that the pregnant women engage when we asked about research, and they're quite good in terms of participating. At the end of the day it's nice to create strategies and opportunities so that research becomes a normal part of clinical practice. And that's what we want. And that's how then we can improve the NHS as well. But actually to create those strategies is what's going to take the time and effort.

Mital Shah  20:35
But it's also important to say that we're using your example previously Sanjay of approaching participants who are coming in or potential participants who are coming into the planned care of either an operation or clinic visit one more research still, particularly not only interventional, but some observational studies as well will need to go through the appropriate ethical checks and balances to make sure it's ethically appropriate and sound. And as part of that, I think, where you have an opportunity to approach somebody ahead of time, rather than in the heat of the moment, I think the onus definitely is on the research team to try to try to do that where possible, so that a potential participant has as much time and space to think about it and to talk to other people, and health care practitioners at their leisure.

Sofia Cerdeira  21:25
Yeah. Now, and I think you've focused, there's an important thing you mentioned the Mital, it may not be obvious for people who might be listening to this podcast. But every single research study from the most simple one observational to the most complicated interventional study goes through a process of checks and ethics teams, and is very scrutinised as to make sure that this does happen. But what we're talking here about is the opportunity to make it more common and be in embedded in normal clinical practice and be actually a part of just regular, everyday regular encounter with the patient and thinking about research. And I think this is what we need to try to make it happen make it more normal, more regular and part of normal clinical care. And how can we do that, and this is how we go into opt in opt out the use of regular, regularly collected data. And I think there's something to be gained with that.

Tanya Baron  22:34
I was just going to say, actually, nobody ever likes talking about money. And I know you mentioned at the start about the money that's brought into the NHS from doing trials, do participants are public and patient members? Are they aware of the money that comes into the NHS by them taking part in trials?

Sanjay Ramakrishnan  22:55
That's a great point, are we I mean, we tell we tell our patients in ethics committee, we are these documents and patient information leaflets if we are paying them directly. So if the study if you join a complicated study, some studies will pay the participant and we tell them that, but maybe it should be okay to tell us tell the information sheet to the participant. This is how you're benefiting not just you, and the medical problem that we're solving, but also the NHS overall. Is it is I think it's okay, I think it should be mentioned, in fact, that's useful information when you're considering how your time is valued. It's a great point, taking it back to your Tanya, we talked about you know, the challenge? Yes, the onus is on the research team to do as much as possible. As if you had the time to give the information by you. You are a successful researcher and multiple studies, lots of very acute research work. You know, I think you're the second highest recruiter for some studies in the country. So how do you do it? How do you work around that in this area where everybody who comes to the hospital has to come to the emergency department? Right, almost everyone, unplanned care all comes through you? How do you deal with that, that problem? And how do you make it routine in your care?

Tanya Baron  24:09
I think it is a very challenging environment to do research with an emergency department. And I think the reason is successful is because we have such an amazing team of research nurses. And if it wasn't for them, it'd be impossible to do studies within the department. I think practical terms, we can't do two things at once. I can't be clinical because the departments are just so busy, and also research or recruit patients to research. And so the most I think we can hope for while we're actually on shift is to sort of raise awareness amongst other people who are working to and to sort of flag up any patients really who could potentially be recruited to our research nursing team. And I think one of the challenges from a nursing point of view and I'm sure this is similar across the UK in emergency medicine is our sort of peak presentations are out of hours really so evenings and weekends. And that in itself poses problems. And so actually what we do is we're looking at expanding our research nurse numbers to cover later they already cover quite a lot of hours during the week and are now extending to cover weekends or some weekends as well. And all sorts of look at using sort of other people's so thinking outside of the box. So one of the reasons some of the COVID trials were so successful was because we you used a lot of medical students. So we had medical students, seconded to us in ED during the pandemic has extra pairs of hands really. And they got involved in research and recruited for us. And that's sort of plan to, to look at how if they can be involved for more sort of other projects and things too. And also further, we look at using clinical support workers as well to start recruiting out of hours, because the intensity of the work is just as the too much when you're actually on shift, but actually, the out of hour's work, because we're where all the patients are, are coming in, really, and we want to make sure we can recruit them as well.

Sanjay Ramakrishnan  26:26
Any final thoughts from you, Sophia?

Sofia Cerdeira  26:28
You still think that research can save the NHS Mital after our conversation?

Sanjay Ramakrishnan  26:40
Do you still think that recent instances of the NHS Mattel after our conversation?

Mital Shah  26:44
Yeah, absolutely. Yes. Despite my personal bias based on my interest in research, I still genuinely think that research can save the NHS, we've heard that it improves outcomes. We've heard that the positive financial impact it has both on the NHS and on the wider UK economy. And I think one of the themes that we've talked about is, we need to slowly try to engage a cultural shift, to try to make it a more routine part of NHS Care, and that's going to be both patients, knowing more about research what research might entail, so when they're approached, it's less of an unknown, and also making sure that there's appropriate support for healthcare staff in terms of training, so that they're in a better place to be able to help deliver research studies.

Sanjay Ramakrishnan  27:34
On that note to all our listeners and healthcare professionals, all the members of the public if you have any thoughts on research, you want to learn more for healthcare professionals. Please look into what training is available for you freely provided from your local clinical research networks in your area. Please think about what else we can do to make research a routine part of NHS Care. Thank you, Sophia, Mital and Tanya for joining me today in this podcast and thank you to all our listeners for listening to this podcast.