Subscribe
Share
Share
Embed
The National Health Executive Podcast is the perfect place to garner insights from across all aspects of healthcare, as we get into the crucial ‘whys’ behind the stories and how they can impact all of us to improve our work, our lives and the care and services we provide as an industry.
Tune in, discover more about our diverse and talented health sector and it may well spark the solution to help you see a problem or challenge in a new light.
So the partnership is actually at the centre of all our operations, really. That has been a discovery that was pioneered through the, bio resource. Treat each individual as an individual.
This is the national health executive podcast, bringing you views, insight and conversation from leaders across the health sector, presented by Louis Morris.
Yes, welcome back to the National Health Executive podcast. Today I'm joined by Natalie Kingston, who is the director of the NIHR Bioresource. First things first, Natalie, welcome to the podcast.
Thanks very much, Louis, very good to be with you. Thank you for inviting me.
Yeah, I'm m looking forward to this one. It should be a good one. But just to start and set the stall out, can you just explain to our listeners what the NIHR bioresource model is, how it works, what goes into it?
Yeah, so we are funded from, the NIHR, the National, Institute for Health and Care Research, and we are one of the four pillars, infrastructures in the genomic landscape, in the UK. So part of, this and, very much an infrastructure that will facilitate, research, experimental and health related research. But the aim is very much for the translation and benefit to patients. So we are able to identify, participants, to contact and recall them, either by genotype, which is obviously their genetic makeup or phenotype for a specific condition, or something like that. And we have many centres. We are based, around different, biomedical research centres in the UK. We, work also very much with clinical research facilities. So we have about now 18 centres, across England.
Yeah. So I believe, I mean, correct me if I'm wrong, the biomedical research centres are a partnership between an NHS trust and a local university. And then you have the clinical research facilities and you have your own bioresource centres, all these moving parts. How important is that collaboration piece?
Well, it's crucial, actually, because, we have different national programmes recruiting patients at scale. So one of them is the inflammatory bowel disease, patient, where we are almost approaching now 50,000, patients with IBD, either Crohn's or colitis, and we are recruiting those participants from the clinic. So working with each recruiting site, each, NHS trust, is very much key for us. and so the partnership is actually at the centre of all our operations, really.
You did mention the volunteer side of things for patients. Volunteers, probably the better word. How many volunteers do you have access to for future research? At the moment? What is that number?
At the moment, we are almost at 300,000 participants. So there is about half of them who are our healthy volunteers and a lot of them are, blood. so we have worked with NHS blood and transplant quite a lot. But we also have rare, disease patients and, common diseases participants, as well. So different, national programme of recruitment. So the rare diseases where we are approaching, 25,000 participants and then we have strength. I mentioned the IBD, inflammatory bowel disease. we also have a non alcoholic fatty liver disease. we also have a strength, which is immune mediated inflammatory disease. So there you'd find ra and lupus, et cetera. We also have a mental health power source and at the minute we are very much focusing on, anxiety and depression through a study called glad and also on eating disorders through the edgy, which is eating disorders genetic initiative. And obviously during COVID we also went and recruited, participants to a Covid-19 virus source. And then there we had some healthy volunteers who may have actually been asymptomatic for Covid, but also patients who needed, hospitalisation as well as intensive care, for some of them as well. So that's all what we have. And more recently, we decided to embark on a new initiative to engage, participants of a much younger age. this is our decipher programme and it stands for DNA, children, young people, health resources. Well, so it's really trying to engage with everyone of all age, of all ethnicity, but also because we think that there is a need to look into childhood, as some disease you may only take place and develop in adulthood may have some origin from a much younger age. So that's how rational behind the decipher programme and I mentioned the diversity and what we are just starting now. Another partner, of ours, ah, genomic England is a programme that has been developed with King's College London and the South Mosley, BRC and team is a programme called Improving Black Health outcomes, or IBO. And that is again to look at, some health conditions who impact, disproportionally. Some, minor, ethnicity groups. Over a quarter of a million people so far and still growing.
I mean, to be fair, we can get onto research themes a little bit later. But you mentioned right at the start there about the health of volunteers. Am I correct in saying when the bioresource started, was it 2007 ish, end of the noughties, you started out with a healthy volunteer. What was the rationale behind that?
Well, that's very interesting. Yes. So it was some researchers in Cambridge and they wanted to look potentially at, ah, the link between our genetic makeup and the environment and developing some health condition. And they started to, wanted to have access to some blood samples and basically they just didn't want to start bleeding, colleagues in a lab. And they felt that actually there was a need to create an infrastructure that would allow volunteers who wanted to contribute to health research to provide the samples to maybe do some online questionnaires or having over night stay in clinical research facilities, you know, for a very specific research purpose. So yeah, they actually wanted the public to be involved. And this circuitry grew from then on. And back in 2012, the NIHR decided that this was something that they wanted to have nationally, so hence the NIHR virus.
I mean, in terms of the specifics, what goes into, I guess, recruiting volunteers in terms of ethics protocols, what do you really need to bear in mind?
Yeah, there's a lot actually. So we have a massive framework around governance and ethics. Obviously you need to have all this clear, first and foremost, before you can actually recruit any participant, even if it's not a clinical trial, it's a research, study. you have to have all those ethical approvals in the first place. doing also, a lot of engagement actually with members of the public to just make sure that the way you go about recruiting participants is actually the way that the participants themselves want to be approached and contribute to research. So there's a lot of kind of, yes, a lot of interaction with, volunteers as well, to develop those paperwork and make sure that everything is inclusive as well. Then after that we actually have various ways, of recruiting participants. So I mentioned NHSBT blood and transplant, where we were able to, ask some blood donors to, join while they were, donating blood through their own donation regime, but through clinics as well. We also have, some means of recruiting through social media. So the mental health spiral source and the decipher, for example, is mainly social media based. So a lot of interaction through this and also having able to recruit online. So an electronic, process to enrol participants, when participants consent, a form. Consent, sorry, to the barriers they have to fill, a consent form. We also provide them with a participant information leaflet, which, is probably well known to anyone in the science. So where you will actually explain the role of the study and what are the risks and what are their rights, so they can withdraw at any time, etcetera. And who runs the study. so they always have the opportunity, to ask for questions, making sure that it's actually, an informed consent. And as part of the biosolids, we say, that we'd like to collect a biological sample. So ideally blood because you can get, serum, plasma and DNA out of it. But for some, again, programmes like the mental health, like deciphering, we actually collect, saliva samples and then that sample is processed and then DNA gets, analysed and we can actually look at the genetic makeup. sometimes we look at a small chunk of the DNA, sometimes we do the whole genome. So the whole DNA makeup is actually analysed. So with that, all that information, we also get a bit of info from our participant about their health and lifestyle. So maybe if they have, a other condition, maybe asthma or eczema or type two diabetes, we'll ask them about maybe their habit for drinking and smoking. So we have supported in the past some studied on, smoking. So we need to know their status, for example, for that. And then with all the data that we have generated from the sample from that health and lifestyle questionnaire that we collect, then we suddenly have such a data of information that we can have, researchers coming to us and then seeking, specific participants according to their study criteria. So it might be a gender, it might be ethnicity, it might be a condition and, so on and so forth and medication. And then we will invite our participant, explain the purpose of the study. What would be their involvement? Would it be an online questionnaire? Would it be three times giving blood, etcetera? And if they want to participate, then we're sure that actually those participants are part of that research study.
Yeah, well, all that work that goes into that and the 300,000 volunteers that you've mentioned, you've obviously spoken about the research themes. What are the future plans in terms of research, the future areas you'd like to focus on, really, I guess drill down into, I suppose.
Yes, yes. So I mentioned, just, our latest programme which is the improving black health outcomes with King's College London and genomic English. So it's very much trying to have a barrier. Society is very much representative of, the, population. So we want, inclusion and diversity. So that's not just ethnicity through IBO programme, for example, but also in terms of age. So decipher. We also want to reach out to, a deprived area and not the most, affluent because we know obviously, that there is a link between deprivation and health. So it's ensuring that everyone has a say and, the chance to contribute to health research if that's what they.
Want to do, all this work that's being done right now. Is this why you wanted to join the bioresource in the first place?
I think the cliche is the fact that I always was, very much interested in biology and science. I did, some, research. So my PhD was in immunology. And you learn a lot about a very small aspect of science and you go very deep, but it's actually not very broad. And yes, maybe one day this would actually have one line in the textbook, but actually it's a very long way from helping people and trying to change and make, some kind of, not necessarily discovery, but helps research that will transform the healthcare. And we have actually, some of our projects who have already had, ah, an impact on this. So I work for example, with the rare disease, court made, some discoveries that are now rolled out into the NHS. So an example of that is very, ah, young, babies and infants, so either in paediatric or neonatal intensive care units when they are very poorly. Now the NHS offer very, a fast turnaround, whole genome sequencing, to just see if actually the condition is related to a genetic, condition. And that has been a discovery that was pioneered through the barrel source. But we also worked a, lot, for example with NHSBT, so the blood and transplant, I mentioned that before, and we have co developed a way of, looking and having, through their genetic makeup, a card that will say what a blood donor's minor groups are. So we all have AOB and resistive negative, but in fact, we have loads of minor blood groups and those become very important when you need to have transfusion again and again. So patients, for example, with sickle cell, disorders or anaemia, will require regular transfusion if you don't match the blood that they receive. Very, well then you potentially put those patients at risk of, reaction through the varices and a consortium called a blood transfusion genome consortium. That array has been, developed and we now NHS, England, will type all sickle cell patients to ensure that we have that card. And then if you match also this to the cause of the blood donors, you can ensure that it's a most safe transfusion for those patients. So you can see that there are loads of opportunities to actually transform the way care is provided and the barriers is one element in that chain.
Absolutely. You mentioned women in science at the start, though, and speaking as a prominent woman in science and research, I believe at the start this year that the health Secretary Victoria Atkins announced, outlined the, I guess, priorities for women's health this year. And one of them was to improve representation of women in research. And through that, and that is being spearheaded through the NHR's research inclusion strategy. Can you tell our listeners about what the strategy aims to do, what it has done, and what it will do, in its lifespan? I believe it's from 2022, 2027, I believe.
It's interesting that you see that women are still underrepresented in various places, in terms of research. so whether they are leaders, actually, you have very or still fewer women leaders in research and in health research, certainly, but also looking at, health conditions that are much, more forgotten almost, I would say I was quite shocked to hear is that women of a certain ethnicity are more likely to have pregnancy complication, and that's a fact. But actually, there's not enough research going, to actually help all this. So I would hope that over the next few years, through the barriers, but through the means as well, we actually pushing the women agenda for ensuring that we understand and we also get a better care for women who needs it.
And just to maybe wrap up, move this penultimate question, actually, a lot of this podcast listenership is health leaders of the here and now. But for the health leaders of tomorrow and the future ones, what would be your, I guess, advice in getting into a career in research, really making your mark and pioneering things? What would you say that women, men, whoever, have to do?
It's a good question. It will be to think about us as individuals, and actually not everyone with the same condition will need to receive the same treatment. We are seeing it more and more that actually for some condition, or some cancer in particular, some, chemotherapy, are not actually very, useful and we should go down the reach, of maybe immunotherapy. But it's actually to treat each individual as, an individual, and then trying to actually understand why some people, or responding well to a treatment, while others will not, and making sure that those people are not forgotten, really.
We've gone from pillar to post, as we always do on this podcast. To be fair, we're talking about the volunteers, what goes into it, the collaboration of the actual bioresource. If there's three things that you'd like to earmark for our listeners that you'd like to, I guess, hammer home some points that you'd like to make sure people listen to and remember, what would.
They be making sure that actually we listen to, members of the public, their views actually is key. Having the trust of our participants, make sure that they know what research will be taken using their samples, using their data, how, we ensure the safeguarding of that data and those samples. So making sure that actually, we don't lose sight of the fact that we are, safeguarding data and sample of members of the public, and that we need to involve them and m making sure that, they continue to trust us to do the right thing.
That has been the National Health Executive podcast. Thank you so much. Nicely taking the time and joining us. Catch you in the next one.
You've been listening to the National Health Executive podcast. Don't forget to like and subscribe to make sure you receive every new addition.