Dr Raghib Ali: We need a cross-society effort to improve health

Matthew

Hello and welcome to the latest Health on the Line. I just want to start by reminding you that ConfedExpo is now only a week away. It's still possible to join over 5,000 other delegates in Manchester Central on the 14th and 15th of June. There are free delegate passes available for all NHS and wider public sector employees. ConfedExpo is set to be one of the biggest and most significant healthcare conferences in the UK, creating a really strong point of focus for health and care leaders and their teams to come together at a time of recovery and, hopefully, transformation.

If you want to join us in Manchester, the Confed website has all the information you need. And also on the website and through my Twitter feed @confedMatthew, you can access a new blog I've written. In it, I explore the growth of care coordination in systems and places. I argue that this kind of practical collaboration may be the best way to instil new ways of working and to start the shift towards more community-based and preventative models of care.

And while I'm on the subject of prevention, I hope you'll find the conversation I had recently with Dr Raghib Ali, the chief medical officer with the Our Future Health project, as interesting as I did. Have a listen.

Matthew

I'm delighted to be joined by Dr Raghib Ali, who is chief medical officer and joint chief investigator at Our Future Health. Dr Ali is a clinical epidemiologist whose research is focused on the causes, prevention and treatment of diseases, including diabetes, heart disease and cancer. He's also a consultant in acute medicine, at Oxford University Hospitals NHS Trust. It's also worth saying that Dr Ali was amongst those recognised in the 2022 Queen's Birthday honours, receiving an OBE for his role during the COVID-19 pandemic.

He was appointed as an independent expert adviser on COVID-19 and ethnicity to the UK government in October 2020. And on four occasions he left his academic position to volunteer clinically during the pandemic. So Raghib welcome. How are you?

Raghib

Good afternoon, Matthew. Fine, thank you. Thanks for having me on the podcast.

Matthew

So, let's first of all, just find out a bit about you and how it is you've ended up with this focus, particularly on preventative health.

What's the journey been to get you to where you are now?

Raghib

It has been somewhat atypical because, as you mentioned, my clinical work is at the opposite end of the spectrum. So, I work in A&E as a consultant in acute medicine. As you said, during covid seeing mainly covid patients, but early on in my medical training, it became apparent to me and in many ways, it was very obvious, that most of the patients I was seeing had conditions which have very long natural histories.

And if we could detect their disease earlier and intervene earlier, then they could be largely prevented or at least delayed until a later stage. That's what really started my interest in public health and then epidemiology and then causation of disease.

Matthew

So, I first met you just a couple of weeks ago. I'd heard of you, obviously, but at a Times’ health commission.

And you were there to talk to us about the Our Future Health project. So, tell us about that. It's a really exciting project.

Raghib

It's an amazing project in many ways, both in terms of its scale and ambition.

So, what we're trying to do is to really change the way that healthcare is delivered in the UK from the current model that we have, which is late-stage treatment. So, detecting disease late when people already have symptoms and signs of disease or when they present with something like a heart attack or a stroke or a cancer that's already spread, to a model where we were able to detect disease earlier, intervene earlier and prevent those diseases. And that's the overall aim of Our Future Health.

In many ways, you could see it as a successor study to the first study that I worked on many years ago, which was UK Biobank. UK Biobank, which many listeners will be familiar with, was the pioneering study about 15 years ago it started, which was looking at how genetics and the environment contribute to the cause of common chronic diseases in the UK with 500,000 people. That’s taught us a lot about risk factors for disease. But what it didn't do was to allow individual-level feedback to participants or volunteers in the study and see what action they could take themselves to prevent those diseases.

That's what we're trying to so with Our Future Health now. So, it's that kind of a successor study to UK Biobank. Those who take part will have the opportunity to get individual-level disease risk feedback in the future and thereby change the natural history of those diseases. And also, to enable that, we are trying to recruit 5 million people because the UK has become, over the last few decades, a very multi-ethnic society.

So, we're trying to get sufficient numbers of people from different ethnic backgrounds. We're also trying to make sure we have enough people from different socioeconomic backgrounds and from all parts of the UK, and to be able to look at all common chronic diseases, and that's why we need such a big number of participants.

Matthew

And how many of you got to so far?

Raghib

So, we started recruitment about eight months ago and as of today we have 500,000 people have signed up in eight months, which we're very pleased about, and about 200,000 people have attended appointments where they give a blood sample primarily for DNA analysis and also have some physical measurements taken. The scale of what we're trying to achieve is unprecedented, not just in the UK but globally, to try to recruit 5 million people into any study hasn't been done before, to do it in the timeframe that we are trying to achieve, which is within the next five years is also unprecedented.

But we've made an encouraging start. But what we're very keen to maintain that momentum and to have as many people as possible to find the study.

Matthew

And before we go any further, because I don't want to forget this, just tell us quickly how people can sign up.

Raghib

We've tried to make it as easy as possible to sign up. So you just go to our website, ourfuturehealth.org.uk. You can read all about the study there, you consent online after reading the policies and information sheets, and then you would book an appointment to give a blood sample, have some basic physical measurements taken, including blood pressure and cholesterol, which are both important risk factors for heart disease and stroke, and also your weight height and waist circumference, which are important risk factors for diabetes.

And then in the coming months and years, we'll be analysing all of the data that we collect from the questionnaire that you complete online, from the physical measurements and from the blood samples to give people an accurate picture of their risk of common chronic diseases.  And also, as I said, to discover more about what causes those diseases in different groups across the UK.

Matthew

And I read in one report that you also ask patients for access to their NHS records. Is that right?

Raghib

That's correct. What's unique about the UK in many ways is that we have such a large number of people in a single healthcare system.

So, the NHS is by far the largest single healthcare system of its type in the world. And the big advantage of that is that particularly for people that take part in this kind of study, one of the key challenges is to find out what happens to them in the future. What we call outcome ascertainment. So, with linkage to health records, both hospital records, primary care, cancer and death records in the UK, we are able to get a much higher proportion of people that we are able to follow up and find what happens to them in the future.

The linkage to health records is really a critical part of Our Future Health.

Matthew

There are so many things about this I find interesting. But one is that we come to associate attempts to gather data from patients with things going wrong really, with public distrust. Just in the last few days, there was a story about trusts accidentally giving information to Facebook, for example.

Now, normally the response to that is to try to be ever more careful. But in some ways, you've kind of leapt over to a different position because you're actually saying to patients, no, your data will not be shared with anyone else. But we, that is to say the study, that the people running Our Future Health, will look at the data and we will engage with you on a personal level.

So, in a sense, what I was thinking is the way you've designed this is that you're asking in a way, you're asking for more from people because you're asking them not just to give you information, but to interact. But you're offering them more as well as; you're not just saying to them, we'll give us this data because it will help our general understanding but give us this data because we can actually then help you.

Raghib

Exactly. So that really is a key difference between Our Future Health and many previous studies, including UK Biobank. For the first time by collecting this information, as you said, we're able to give individuals individual-level feedback on their risk of common chronic diseases and we take explicit consent from individuals to enable us to link to the health record. And in the future, we’d like to do is also take consent to link to other records that the government, and the Office for National Statistics for example, collect through the census and other administrative databases, which again are key risk factors for health outcomes, you know the so-called social determinants of health are really very important for all of the common chronic diseases as well.

So again, the UK really is uniquely well placed to do this kind of research globally and this is really a great opportunity for us to take the lead going forward for this personalised prevention, personalised or precision public health approach, which hasn't really been tried anywhere in the world.

Matthew

You see, I think that we too often forget when it comes to asking people to participate in research or offer their data that on one side of the ledger is people's concerns and worries, but on the other side is the potential benefits. And I think that we've been as guilty in the past of underestimating the need to demonstrate to people that it's going to be of value to them, as we have of underestimating their concerns about the risk, which is why I think, you know, the design of what you do is really interesting and exactly as you say, having a health service that people trust and having a study, the motives of which people trust, I think is really important.

Now, you talked about the importance of having a representative sample. It's early days, but how's that going?  Are there groups that you're having to work harder or will have to work harder to recruit?

Raghib

What we know and again, going back to our experience of UK Biobank, is that we do get lower response rates from certain kind of communities and sections of society.

So, UK Biobank, although very successful, did have relatively smaller numbers of people from ethnic minorities. Only 6 per cent of the samples from a non-white or non-European ancestry background, a relatively small proportion were from the most deprived kind of areas of the UK, and it was also a relatively healthier than average. And that's a common problem with all studies of this type where you rely on people to volunteer.

What we've tried to do with Our Future Health from the beginning is to really make it as easy as possible for people from underrepresented groups to take part. There's more that we are going to do going forward. For example, I know we have opened clinics in areas that historically have been underrepresented in research, in areas with the highest levels of deprivation, with the highest proportions of ethnic minorities and younger populations, all of which are generally underrepresented.

And we're keeping clinics open for longer in those areas again, so that people have more opportunity to take part. But going forward, there's a lot more we can do.

I mean, one of the things that we learn from the covid vaccine rollout was the importance of building trust - in many of these communities where there are valid and understandable reasons why they have less trust, for example, in the health system and in research in general.

And that involves working with community groups, with religious organisations, with people on the ground to build that trust over time. And that will be very important for us to make sure we get good response rates amongst all parts of society.

Matthew

Now, a concern that I've kind of developed and perhaps you can put my anxieties to rest here, but it feels to me as though we may be approaching a time where there's a kind of imbalance in terms of what it is that that that biomedicine is able to do.

And what I mean by that is that there seems to be the possibility of some very major breakthroughs. Well, there already are, but even more in diagnosis that we might become more and more effective at diagnosis. But my worry is what happens if treatment lags a long way behind that? Your study will contribute to this, in a sense, it will make us even better at being able to diagnose risks.

But are you concerned that we're going to end up in a situation where a lot more people know that they are ill or that they've got a propensity to illness, but we won't necessarily be able to do that much about it?

Raghib

So, it's a very valid question and concern and it's definitely at the forefront of our minds as well to make sure that we're not just giving people information that cannot be acted upon because that's not good for them, neither their physical or mental health.

So, initially we will feedback information on disease, where there are existing programs for them to be dealt with, so for example, with diabetes and ischaemic heart disease, heart disease, we have the existing NHS health check program for people aged 40 to 74. What the additional information will gather through Our Future Health will enable people to have more accurate information about their risk of disease, and that can be dealt with when they go for their health check.

Secondly, for diseases like breast cancer, where we have a screening program, being able to identify women who are at high risk of breast cancer based on their genetic risk, who currently are not identified and so are not part of the screening program that will have to be done in close coordination with the NHS screening programme as well. The whole program is being done in partnership with NHS. But its implementation, once the research phase is kind of over, its implementation within the NHS is a key challenge which we're very aware.

The only other point I’d make is that for most diseases, now, fortunately, things have moved on a lot over, even in the time that I've been practicing medicine, we have treatments for many more diseases than we had even 25 years ago.

But there are some diseases where we don't have treatments and of course we would ask participants in advance and there would have to be genetic counselling and other types of counselling available for them if they wanted to know about those types of diseases before we would feedback that type of information.

Matthew

And I'm sorry to ask you a kind of question that is both technical and potentially just reveals my deep ignorance.

But if you talk about cancer, often we hear statistics that say that if cancer is discovered earlier, then their chances improve. But to what extent is that simply a function of the fact that we've got it earlier, but actually it still pursues the course that it would have pursued, even if we'd only discovered it later? And to what extent is that because we actually helped to cure it, the treatment actually makes a big difference. Can you just unravel that for me a bit.

Raghib

Particularly for cancer, we know for nearly every cancer, if you are able to detect it before it has spread, then the chance of cure is much higher. So, a breast cancer that's detected on mammography, for example, is still confined to the breast before it has a chance to spread, has a much higher cure rate than if it spreads either to local lymph nodes or other parts of the body, say, and that applies to pretty much every other cancer as well.

There are also ongoing trials, research, that needs to look at what we call circulating tumour cells. So even if you can't detect a cancer on a scan or mammography, for example, you’ll be able to detect it in a blood sample, those studies are still going on so we don’t know exactly how effective they will be in improving prognosis.

I think your question is, is very valid for many cancers, but we don't have that information particular on this this newer technology. But what Our Future Health will do, partly because of its scale, but also because of, as I say, within the NHS it’s the opportunity to really do these research studies, you know, to do the trials that will enable us to understand and to answer that question.

Does detecting a disease earlier and intervening earlier lead to a better outcome. Intuitively, of course it should. But until you do the studies, particularly for some diseases, where it hasn't been done before, you know, we won't know that for certain.

Matthew

Can we turn to the issue of inequalities and health inequalities? And this was something that when you spoke to Times Health Commission, I noticed that Rachel Sylvester, who chairs it and is also a journalist, she was particularly interested in.

You've had some kind of profile, some profile for what you said about health inequalities. I think you've encouraged us to take a nuanced approach to understanding the nature of health inequalities. I mean, obviously you've all thought about this a lot, but what would you say are the most important things for us to understand when we talk about health inequalities?

Raghib

So unfortunately, in the UK we have extremely different outcomes for different people depending particularly on where they live and their level of deprivation.

If you look at life expectancy, which is a very good measure of the overall kind of health of a community or an individual or a nation, we have extremely good data in the UK looking at both life expectancy and healthy life expectancy. So, how long you spend not just alive but in good health. And the differences between, for example, Blackpool, which has the lowest life expectancy, lowest healthy life expectancy in the UK, compared to Westminster, which has the highest, is more than ten years for life expectancy, more than 20 years for healthy life expectancy.

So, these huge differences that we see and have been there for some time and really haven't decreased very much over decades and in some ways are getting worse now. That's really the biggest driver of health inequalities in the UK. As you alluded to, quite a lot of my research, for example, has been on ethnic inequalities. So how outcomes differ by ethnic group and particularly for some ethnic groups in the UK who tend to be more deprived, so the Pakistani and Bangladeshi communities in particular are the two most deprived groups in the UK.

And there were some interesting, well there’s been quite a lot of data now, which paradoxically has shown that Pakistanis and Bangladeshis, for example, have better outcomes than you'd expect. So, their life expectancy is higher than whites, and it's higher than you'd expect based on their levels of deprivation. And this is why, as you said, I think we do need to look at these inequalities in a more nuanced way to understand what's driving them.

So, why is it that someone in Blackpool has a ten-year lower life, but not just than someone in Westminster, but than in Tower Hamlets, for example, which also used to be a relatively deprived part of the country, but is predominantly now made up of ethnic minorities as opposed to Blackpool, which is predominantly white? And these are some of the questions which we haven't really had a chance to look at. And actually, Our Future Health will help with this because if we get adequate numbers of people from deprived backgrounds and from different ethnic minority groups, we'll be able to understand much better at the individual level what's driving those differences that we see at the group level.

Matthew

And it's important, isn't it, I would have thought, to distinguish between, well I guess it's three different domains of inequality. So one is, as it were, the propensity to develop a disease which I guess is largely genetic. And you might say, well, that's kind of what philosophers call ‘luck’ inequality. It's not inequality based upon necessarily kind of structures of power or exploitation, but it's just that some people have more luck than others in terms of their genetic inheritance. And that would explain why it is that, you know, certain ethnic groups are more or less susceptible to particular diseases.

Then you've got the social determinants which would be largely explaining, you know, issues around poverty, poor education, which would explain why people with a similar kind of genetic inheritance might end up with very different outcomes because of that social experience, the anxieties and the pressures that come with poverty, the lack of agency and self-confidence that comes with poor education.

And then the third element is inequalities in terms of the way the health service itself approaches people. The so-called inverse care law might be an example of that, or just sheer, you know, racism, for example. I mean, important for us and is this is one of the things you hope Our Future Health will help to disentangle these different kinds of sources of inequality? And are those three broadly, right?  So, maybe there are others I'm not I'm not aware of.

Raghib

That's a good summary of the types of contributors to different outcomes. So genetic susceptibility to disease can be important, particularly for some diseases, although most of the differences we see between groups are not because of genetics, but they are mainly because of differences in environment, including social determinants, but also the more kind of proximal things that we measure. So, tobacco use, alcohol abuse, diet, physical inactivity, etc. which are very much linked to the social determinants and poverty and deprivation, unemployment, etc.

And then access to healthcare, particularly in countries where you don't have a system like the NHS, that's very important in the US especially. In the UK, the differences are not as great as you see in the systems where they rely on health insurance.

But there are, as you say, there are some differences in access to care and they tend to tend to have slightly worse access to care in areas where the need is highest, the so-called inverse care law. So that definitely all the things that we will be looking at within Our Future Health.

The paradox that I mentioned really for these two groups, Pakistanis and Bangladeshis is that on many metrics you’d expect them to have worse health outcomes. They are poorer on average. They live in areas that historically have had lower life expectancy, they have high rates of unemployment, etc. And a number of studies now have shown that they have lower overall mortality, particularly pre and post covid. Covid was an exception, I’m happy to explain why, but in terms of non-infectious diseases, so cancers particularly, they tend to have lower risks and it's not fitting with the general pattern we see of deprivation leading to much lower life expectancy and much worse outcomes.

So, that ten-year gap that I mentioned earlier between the most and least deprived life expectancy, we really don't see that Pakistanis and Bangladeshis and this is something which we really need to investigate further because it could indicate the potential prevention in other groups as well.

Matthew

So, I've heard your explanation for covid, and I think it's primarily about people living in large households was the factor which led to a higher death rate amongst those communities that do tend to live in larger households. Tell me if I'm right about that.

But also, I'm interested, Raghib, do you think there are there are factors which we have systematically underestimated that we'll find out more about. I mean, for example, a lot of people talk about loneliness and social isolation as being significant factors. Now one tends to assume that in terms of mental health, but of course mental health and physical health are entwined.

So, do you have a sense that there are significant factors which we might have underplayed or not seen?

Raghib

I think that's a very important point, actually. So, with covid it was partly the size of households but what is particularly different in the Pakistani and Bangladeshi communities is that people over the age of 60 in those two communities were much, much, much more likely to live with their children and grandchildren.

Matthew

You gave a remarkable statistic that they were 35 times more likely to live with their children.

Raghib

Yes. And in general, that's quite good for an older person’s health, you know, having that family contact, having that support, being able to go with somebody to the hospital or to the GP. And I see this as a doctor in a hospital, the support that these communities in particular have from their families is much higher than I've seen with other communities.

So, they benefit a lot from not having that loneliness. As you said, there is evidence that loneliness is bad both for mental health and physical health, and some studies show it may even decrease life expectancy, even to the simple level that if you have a heart attack or a stroke and collapse at home, for example, and you're on your own, then your prognosis is worse than if you have somebody with you who can take it to the hospital quickly.

So even as simple as that, you know, being on your own is harmful. But in general, the amount of contact that many older people have in this country is quite low. And I don't have statistics to hand, but there are, you know, a proportion of elderly people who live on their own, who have very little contact with the outside world, with relatives or friends.

And I think we will see in the coming months and years and through studies like Our Future Health the detrimental impact that's having on people's health. And because if we get sufficient numbers of people from these other communities, it'll be easier for us to make those comparisons to see how important that family support and that social network support is to outcomes.

Matthew

Yeah, that'll be fascinating to see.

Now, you have been tolerant enough to hear me suggest one kind of classification. Let me just try another one on you. And I would be interested to see what you think of this. I've been to lots of meetings talking about prevention and I got to the point of getting frustrated about the fact that we talk about all sorts of different things as prevention, and we mean very different things.

And the reason it frustrates me is not just because I'm kind of a nerd, you know, a conceptual nerd, but because it seems to me that the barriers to action are very different from one domain to another. So let me very briefly run this past you. So, the first area I would call medical prevention, and what I mean by that is simply really good clinical practice.

I mean, we ought to be encouraging all clinicians to try to find ways of intervening earlier and earlier and therefore reducing the harms that people suffer. Now, easy to say, but hard to do. But that's really that’s what medicine should be seeking to achieve. The second area I would call environmental and what I mean by that is those things in the environment beyond the individual's control, might be air quality, might be infectious diseases, might be the number of chip shops in your locality or whatever it might be.

We broadly often refer to this as kind of domain to public health, but I prefer to call it environmental because they are things beyond the individual's control that influence health.

The third area is what I would call public. And what I mean by public is these are the areas where the critical thing is encouraging the public to do something, whether that is to on the one hand improve their lifestyle or on the other hand to take advantage, and this will be an ever-bigger factor, of the possibilities of diagnostic tests or whatever, which enable them to understand their risks and act on that.

And then the fourth one I'd refer to as social prevention. And here what we're trying to do is to convince people for whom health is not their number one priority to take health seriously. This might be housing associations, or it might be schools, or it might be people who set welfare policies or employers, we are encouraging them to think about health.

Now, the reason I kind of latched onto this framework was because the challenges in the first area are around clinical engagement. The challenges in the second area are about regulation and investment, the challenges in the third area are about how you build the trust of the public, how you engage with the public and inform the public. And the challenges in the fourth area is really about working in partnership with other organisations so that they take health seriously.

All it seems to me quite different kinds of challenges. Now, I know, I've just sprung this on you, but I wonder what you think.

Raghib

That's a very good summary of the challenges and why, in many ways, it's been quite difficult to reverse some of the trends that I discussed earlier.

I mean, they're all important and they're all complementary. In terms of what will give you the biggest impact on these inequalities that we see, I think it's clear that the social aspects and deprivation, poverty, etc. that's what is driving the biggest differences more so than the other three things that you describe, though they are all linked.

I think there's actually good evidence that what doctors do and what the health service does in many ways will have the least impact on those big inequalities which, speaking as a doctor, is in some ways counterintuitive, but it's true. I mean, that's what the evidence would suggest, that we do have a role, but it's not going to be the main factor in in reducing those inequalities.

So, yeah, they only that addressing that they're all complementary. Our Future Health is a part of that. But I would be the first to acknowledge that it's only a part of addressing the prevention challenges that we face.

And if government and the NHS and other parts of society don't all work on those other parts of prevention, then Our Future Health will have much less impact than if we can coordinate together.

Matthew

So just a final question because we're running out of time, but I think there are reasons for hope. And let me explain why.

I mean, things are tough in the health service and there's some really big financial problems coming our way this year. But on the one hand, we have seen recently a much greater understanding of the economic impact of poor health. And the effect on inflation, for example, of hundreds of thousands of people, millions of people not working because they’re ill or because they're looking after people who are ill.

And also, we've seen the creation of integrated care systems where there is an explicit commitment to focusing not just on what the health service does, but on health outcomes, on health inequality, the wider role of the health service. So I wonder, do you share with me the sense that if we can pull our gaze up a little bit from the incredibly difficult day-to-day challenges, we've got this wider understanding that if we want to address health, it's not just about the NHS, but it's about thinking about, to put it in the terms that Keir Starmer puts it, and he's not the first to say this at all, but we need a kind of health mission across the whole of government and society, not just policies for the health service.

Raghib

I definitely agree with that. This goes back to my previous answer, people estimate that 80 per cent of what influences health outcomes is outside of the health system, the NHS and only 20 per cent is within it. So, we certainly do need, not just a cross-government, but I think a cross-society effort to improve health generally and to reduce inequalities.

But like you I am also optimistic, I mean we are facing tough times, both the primary and secondary parts of the NHS. But I am seeing from both parties, you know, an emphasis on looking longer term, thinking about how do we change our model from a national sickness service to a national health service, the importance of prevention.

And that's very encouraging. I think the political system and cycle in some ways doesn't encourage that kind of long-term thinking. But the fact that, even a study like Our Future Health being set up and funded, you know, which it might take ten, 15, 20 years to really see the fruits of this study, it does show that commitment to the longer-term way of thinking.

So, I would agree with you, we should be optimistic about the longer-term prospects for improving health and decreasing inequalities in the UK.

Matthew

Well, governments are always better at the long term after the election, so we need an early election regardless of what we want the outcome to be - get the election out of the way will get a bit more long-term thinking.

Thank you so much for joining me today. I'm off to sign up to Our Future Health. Thank you.

Raghib

Thanks, Matthew.