Dr Natalie Banner, Dr Raghib Ali, Professor Naomi Allen, Dr Andrea Ramírez: How can we unlock the potential of large-scale health datasets?

In this episode, our guests discuss the potential of large-scale
health datasets to transform research and improve patient
outcomes and healthcare systems. Our guests also delve into the
ethical, logistical, and technical challenges that come with
these programmes.


We hear how organisations such as UK Biobank, Our Future Health,
and All of Us are collecting rich, diverse datasets,
collaborating and actively working to ensure that these resources
are accessible to researchers worldwide.


Hosting this episode is Dr Natalie Banner, Director of Ethics at
Genomics England. She is joined by Dr Raghib Ali, Chief Medical
Officer and Chief Investigator at Our Future Health, Professor
Naomi Allen, Professor of Epidemiology at the Nuffield Department
of Population Health, University of Oxford, and Chief Scientist
for UK Biobank, and Dr Andrea Ramírez, Chief Data Officer at the
All of Us Research Program in the United States.


"There are areas where academia and the NHS are very strong, and
areas where industry is very strong, and by working together as
we saw very good examples during the pandemic with the vaccine
and diagnostic tests etc, that collaboration between the NHS and
academia industry leads to much more rapid and wider benefits for
our patients and hopefully in the future for the population as a
whole in terms of early detection and prevention of disease."


You can download the transcript or read it below. 


Natalie: Welcome to Behind the Genes  


Naomi: So, we talked to each other quite regularly. We have tried
to learn from each other about the efficiencies of what to do and
what not to do in how to run these large-scale studies
efficiently. When you are trying to recruit and engage hundreds
of thousands of participants, you need to do things very cost
effectively. How to send out web-based questionnaires to
individuals, how to collect biological samples, how the make the
data easily accessible to researchers so they know exactly what
data they are using.  


All of that we are learning from each other. You know, it is a
work in progress all the time. In particular you know, how can we
standardise our data so that researchers who are using all of us
can then try and replicate their findings in a different
population in the UK by using UK Biobank or Our Future
Health.   


Natalie: My name is Natalie Banner, and I am Director of Ethics
at Genomics England. On today’s episode we will be discussing how
we can unlock the potential of large health datasets. By that I
mean bringing together data on a massive scale, including for
example genomic, clinical, biometric, imaging, and other health
information from hundreds and thousands of participants, and
making it available in a secure way for a wide range of research
purposes over a long time period.  


Through collaboration and industry partnerships, these programmes
have the potential to transform research and deliver real world
benefits for patients and health systems. But they also come with
challenges ranging from issues in equity and ethics through to
logistics, funding, and considerable technical complexities. If
you enjoy today’s episode, we would love your support. Please
like, share, and rate us on wherever you listen to your
podcasts.    


I’m delighted to be joined today by 3 fantastic experts to
explore this topic. Dr Raghib Ali, Chief Medical Officer and
Chief Investigator at Our Future Health. Professor Naomi Allen,
Professor of Epidemiology at the Nuffield Department of
Population Health, University of Oxford, and Chief Scientist for
UK Biobank, and Dr Andrea Ramírez, Chief Data Officer at the All
of Us Research Program in the United States.  


Andrea, if I could start with you. It would be really great to
hear about All of Us, an incredibly ambitious programme in the
US, and maybe some of the successes it has achieved so
far.  


Andrea: Absolutely. Wonderful to be here with you and thank for
you for the invitation. The All of Us Research Program started in
2016 from the Precision Medicine Initiative and was funded with
the goal of recruiting 1 million or more participants into a
health database. That includes information not only from things
like biospecimens including their whole genome sequence, but also
surveys that participants provide, and importantly linking
electronic health record information and other public data that
is available, to create a large database that researchers that
access and use to study precision health.  


We have recruited over 830,000 participants to date and are
currently sharing available data on over 600,000. So, we’re
excited to be with your audience, and I hope we can learn more
and contribute to educating people listening about precision
medicine.  


Natalie: Thank you, Andrea. And not that this is competitive at
all, but Raghib, as we are recording this, I understand the Our
Future Health programme is marking quite a phenomenal milestone
of 1 million participants. Would you mind telling us a little bit
about the programme and something that you see as the benefits of
working at scale for health research.  


Raghib: Thank you very much. So, Our Future Health is a
relatively new project. It was launched in 2020 with the aim of
understanding better ways to detect disease as early as possible,
predict disease, and intervene early to prevent common chronic
diseases. Similar to All of Us, we are creating a very large
database of participants who contribute their questionnaire data,
physical data, genetic data, and linkage to healthcare records,
with the aim as I said, to really improve our understanding of
how best to prevent common chronic diseases.  


So, we launched recruitment in October 2022. Our aim is to
recruit 5 million participants altogether, and in the last 2
years about 1.85 million people have now consented to join the
project. But you are right, as of last week we have what we call
1 million full participants, so people that have donated a blood
sample, completed the questionnaire, and consented to link to
their healthcare records. In our trusted research environment, we
now have data on over 1million people available for researchers
to use.  


Of course, we have learnt a lot from the approach of UK Biobank,
which we are going to hear about shortly, but the resource is
open to researchers across the world, from academia, from the
NHS, from industry, so that will hopefully maximise the benefits
of that data to researchers, but as I say with a particular focus
on early detection, early intervention, and prevention
research.  


Natalie: Thank you Raghib. Great to have you with us. Naomi,
Raghib mentioned that UK Biobank has been running for a long
time, since 2006.  It is a real success story in terms of
driving a huge range of valuable research efforts.  Could
you talk to us a little bit about the study and its history and
what you have learned so far about the sort of benefits and some
of the challenges of being able to bring lots of different
datatypes together for research purposes?  


Naomi: Yeah, sure. So, UK Biobank started recruiting 0.5 million
participants in 2006 to 2010 from all across the UK with a view
to generating a very deep dataset. So, we have collected
information on their lifestyle, a whole range of physical
measures. We collected biological samples, so we have data on
their genomics and other biomarkers. Crucially because they
recruited 15+ years ago, we have been able to follow up their
health over time to find out what happens to their health by
linkage to electronic healthcare records. So, we already have
8,000 women with breast cancer in the resource, cardiovascular
disease, diabetes, and so on.  


But perhaps most importantly, not only does it have great data
depth, and data breadth, and the longitudinal aspect, is the data
is easily accessible to researchers both from academia and
industry, and we already have 18,000 researchers actively using
the data as we speak, and over 12,000 publications already
generating scientific discoveries from the
resource.     


Natalie: So, we have got 3 quite different approaches. Recruiting
in different ways, different scale, different depth of data
collection and analysis, but all very much around this ethos of
bringing lots of different datatypes together for research
purposes. I wonder if you could talk a little bit about how you
might be sort of working together, even though you have got
slightly different approaches. Are there things that you are
learning from one another, from these different data
infrastructures, or how might you be looking in the future to
work together to address some of the challenges that might come
up from working at scale?     


Naomi: So, we talk to each other quite regularly. We have tried
to learn from each other about the efficiencies of what to do and
what not to do in how to run these large-scale studies
efficiently. When you are trying to recruit and engage hundreds
of thousands of participants, you need to do things very cost
effectively. How to send out web-based questionnaires to
individuals, how to collect biological samples, how to make the
data easily accessible to researchers so they know exactly what
data they are using.  


All of that we are learning from each other, and you know it is a
work in progress all the time. In particular, how can we
standardise our data so that researchers who say are using All of
Us can then try and replicate their findings in a different
population in the UK by using UK Biobank or Our Future Health.
So, can we come up with common standards so that researchers can
better directly compare the data that they are using? So, we are
in close contact with each other.  


Natalie: Fantastic, thank you. And Andrea, from your perspective
obviously you are collecting data in the US. Are you finding ways
of working internationally and with other infrastructures like
Biobank and Our Future Health around things like data standards?
It sounds like something simple, but I can imagine it is quite
complex in practice.  


Andrea: Absolutely, and that dialogue and understanding and
learning from each other both informally in meetings and talking
as well through the published literature. So, all of these
datasets are actively widely used, and seeing what is coming out
in publications helps us know what researchers are doing with the
data. And when you see different researchers either generating
hypotheses from our datasets in a different way, or testing
hypotheses differently, that helps us understand where some
benefit might be added to our dataset or where we really may need
to grow in a different direction to meet some other research
needs.  


I think that every study design always struggles with that
balance between knowing exactly what we want to study and
therefore building very specific questions and very specific
protocols, but also allowing for the knowledge that we don’t
really know all of the discovery we need to make and bringing in
datapoints that will really generate those new hypotheses for the
future.   


 I think for our study in particular, UK Biobank has been so
remarkable in this way, helping structure All of Us to be able to
contact our participants like UK Biobank and say, “Hey, we didn’t
really know what we were going to get, but we have put all this
wonderful data together and now we need to do a deeper
dive.”  


So, the engagement and long-term return of those UK Biobank
participants has really enriched our data, and we have learnt
from UK Biobank a lot there, and hope through growing our
partnerships programme that we can continue to create partnered
research opportunities to strengthen that data as well. That is a
new thing coming out of our group. You may have heard of it
previously as ancillary studies, but we recognise the partnership
that is important for those research opportunities. So, we are
reporting here that we are hoping to rebrand it to reach a larger
audience, and that is led by Dr. Shelley, as partnered research
opportunities that will allow us to re-contact, bring our
participants back, and really deepen that dataset.  


Natalie: Thank you. And Raghib, I know that it is a really
important part of the Our Future Health model about going back to
participants, but you are in quite early stages of working out
what those opportunities might look like.  


Raghib: Yes, very much early stages. Just to reiterate the point
for me personally, having started my research in the UK about 20
years ago, I have certainly learnt a lot personally, but we have
all learnt a lot from the model that UK Biobank established in
terms of collecting data and providing it to researchers, and I
see these 3 studies as very much complimentary.  


All of Us again have done a lot more work in terms of providing
feedback to participants about their risk of disease and genetic
information, and as you say Our Future Health was set up
deliberately to not just be a purely observational study, but to
give participants feedback about their risk of different chronic
diseases as well as the opportunity to take part in not just
studies to collect data, but also interventional studies to see
if we can change the natural history of disease and prevent
diseases in our participants.  


So, that has never really been done at scale before, and that is
certainly a big challenge for us to do, not just in the UK, but
anywhere, including the US and working with health systems as to
how best to do that. So, you know we have spent the last 2 years
really trying to understand how best to recruit participants and
to provide data to researchers for the next couple of years, and
long beyond that we will be looking really as to how we can
maximise the benefits of providing feedback to participants and
taking part in interventional studies.  


Naomi: I think one way in which we can all learn from each other
actually, is we know how to recruit hundreds of thousands of
people, the general population, into research study, and the next
challenge is how do you keep engaging them, telling them what you
are doing. You can't collect everything when they first join the
study, or they would be with you for days. So, what UK Biobank
has been doing is sending out web-based questionnaires, a couple
a year, to find out extra information about health outcomes,
lifestyle factors. Inviting them back to specific assessment
centres.  


So, we are inviting 100,000 participants back for imaging, and
then again over the next few years for a second scan. So, I think
the real challenge here is once you have recruited them, how to
find that right cadence of engaging those participants to keep
contributing their data and their biological samples to really
maximise the value of the dataset for research. That is an
ongoing challenge for all of us. But I have to say, the UK
Biobank participants, they are an amazing group of individuals,
very altruistic.  


Our Future Health and All of Us, we don’t give feedback, so there
is nothing in it for our participants other than knowing that
their data may help the future health of their children, and
their grandchildren, and the rest of the world. So, that is very
humbling, to know that the data that they have generated, and we
have collected on them, is being used in that way.  


Natalie: That’s a really interesting point, Naomi, about the
difference between a research study that is designed for
answering a particular question. You gather specific data for a
specific purpose, and when it comes to recruiting participants
into that you can be very clear about what it is you are trying
to do.  


But of course, for all of these programmes, the whole nature of
them is that you are collecting a lot of data over a long period
of time, and it could be used for all sorts of different
purposes. You can't say at the outset exactly what those purposes
might be and what those outcomes might be. So, there is a really
interesting question, and of course I would say this with my
ethics hat on, a really interesting question around sort of
participant trust and confidence in those programmes.  


Naomi, you spoke just then about one way of retaining engagement
and retaining people’s interest, but I wonder Raghib and Andrea,
if you have got thoughts on those sort of questions of how you
can create that environment where participants can trust what you
are doing with data over a long period of time, when you can't at
the point at which they consent, say exactly how that data might
be used? You have got a sense of the kinds of purposes, but you
can't be too specific       


 Andrea: Sure. We know, and I have learnt from my own peers
in this role, that enrolment in the study isn’t the end point of
engagement. All of Us’s approach on engagement has been
communicating with the entire community and really being there in
the community, and that has been very powerful.  


One effort over the last year we are proud of has been what we
are dubbing participant driven enquiry, and that is where we say,
“Thank you participants. We have gotten a ton of data out there
for use, and funded researchers to use it all the time, but what
do you, the participants, really want?” We were able to then take
papers that researchers write and help tell participants and
explain it in lay language, so the participants can say, “Hey, I
have a question. Could you answer that for me?” Maybe we can,
maybe we can't, but it has been very interesting to hear what
participants want to know, and that participant driven enquiry
project has turned out to be a big opportunity
there.   


The question they came to was not easy. Certainly, we didn’t
expect an easy question, but they came to us asking, “Why is my
diabetes worse than someone else’s? Is it the environment? Is it
my genome? Is it my access to care? Why can't my diabetes be as
well controlled as someone else’s?”  So, that has been huge,
to interact directly with our participants and help really close
the loop by answering questions in the language of research and
show them how their data is contributing back.   


Natalie: Thank you. And Raghib, how are you sort of grappling
with these questions, particularly because you are recruiting so
very heavily at the moment?  


Raghib: So, as you say it is a challenge, and people do join the
programme primarily based on trust that we will use their data
for public health benefit and for the benefit of the whole
population, but they also join on the basis that they will get
back information about their own health and their risk of
disease. To do both of those is not straightforward. I mean, the
first of those, it has been well established by UK Biobank, and
about 80% of our participants also say they are doing it
primarily for to altruistic reasons, which is great. But 80% also
said they would like to receive feedback about their own health,
which is also understandable, and so we need to find ways to
provide that in a timely way, but also in a way that the health
service can manage. That is going to be one of our key challenges
going forward.   


But to echo what Naomi and Andrea have said, I mean to maintain
participant’s engagement with the programme is not easy. We need
to make sure that they are receiving information regularly, are
kept up to date with what we are doing with their data, with the
work that we are doing with academia, with the NHS, with industry
etc. It is easier now than it was before because Our Future
Health has been set up as a digital cohort, so we have means of
communicating much more easily with our participants. But yeah,
as you say we are at early stages. Over time that does get
harder, to maintain that engagement. So, we know in the next one
to 2 years we need to step up our work on feedback and
recontact.  


Natalie: Fantastic. I really love the idea of like the
participant-led enquiry. That is something that I think our
participant panel at Genomics England would really like to hear
more about.  


So, speaking about sort of ongoing engagement with participants,
one of the challenges we know around recruiting into large-scale
studies like this is that many research datasets don’t have equal
representation from all communities. That might have an impact on
the quality, the representativeness of the scientific outputs
that you can generate, and potentially the benefits back to
patients and participants.  


How are you addressing this challenge in recruitment where you
may have some communities that are not as engaged with scientific
research. You may have elements of distrust or people being
marginalised, having difficulty accessing research and these
sorts of opportunities. Do you have any examples of what has
worked really well? Raghib, if I could come to you first.  


Raghib: Sure. So, I mentioned I worked on UK Biobank about 20
years ago. One of the things I was looking at then was how we
could maximise participation, particularly of people from ethnic
minorities into the project. Because of the age group that was
chosen by UK Biobank for very good reasons, age 40 to 69, the
proportion of people from ethnic minorities was relatively small.
So, although it was representative for that age group, I think it
was about 6%, or 34,000 out of the 500,000, that were from
non-white ethnic minorities.  


So, when Our Future Health was set up, we knew that the
population has changed anyway. You know, the UK has become a much
more ethnically diverse society. But also, because it is a cohort
from 18+ and I think minorities tend to be younger on average
than the white population, we knew we had an opportunity to
really have a big step change in the number of people that could
take part in a study like this. So, our aim is actually to get
10% of the whole cohort from ethnic minorities, so 500,000 out of
the 5 million from ethnic minorities. Actually, so far we are
pretty much on track. So, of the 1.8 million that have consented,
about 180,000 are from non-white ethnic minorities.  


That is extremely important, particularly for genetic research
where non-European populations are very much underrepresented in
nearly all genetic databases. Secondly, from a UK context,
although it applies of course in all countries, is that people
from more deprived backgrounds are also less likely to take part
in this type of research. So again, we have made a very
deliberate attempt to try and ensure we have adequate numbers
from the most deprived quintile. Again, about 10% of the cohort
so far, nearly 200,000 are from that most deprived quintile who
both are underrepresented in research, but also have the worst
outcomes. So, this is really our first study that has been big
enough in the UK to look at that group properly and understand
some of the factors at an individual level that we haven’t been
able to in the past.  


Finally, geographically, so the first time again because it is a
digital cohort, we were able to recruit people from all over the
UK. So, every single part of the UK is now represented in Our
Future Health, particularly coastal communities and rural areas
that haven’t been able to take part in this type of study before,
as well as Northern Ireland. You know, for the first time we have
got that full geographical coverage.  


Natalie: Fantastic. I suppose a lot of that recruitment approach
has very much been about going to where people are, rather than
expecting them to come to you. Is that right?   


 Raghib: That is right and thank you for reminding me. So
yeah, we have had a different approach. So, we have opened up
many, many more clinics than previous studies through a
combination of mobile units, shopping centres, community
pharmacy. Community pharmacy in particular has been very
important. So, to date we have had about 400 different venues
that we have been able to recruit. That is over 1 million people
that have given blood samples, and that has really enabled people
from every part of the country to take part. Secondly, we have
kept clinics open in areas of greater deprivation and ethnic
diversity much longer than in other areas, to maximise the
opportunity for them to join. Thirdly, we do provide
reimbursement for people with expenses to ensure they aren’t
excluded because of financial reasons, and again that has
helped.   


Natalie: So, really making those efforts is evidently paying off.
Andrea, have you had similar experiences as All of Us? What has
your approach been to try and ensure that you are getting a wider
representation from different communities?  


 Andrea: It has really been a focus on the programme from
the start to engage those who have not been included in research
in the past and make sure the opportunity is there to
participate. Our Engagement Division, led by Dr. Corrine Watson
has really pioneered reaching those communities here in the
US.  


I think one other thing I will mention that we think about when
we think about how to engage participants and reach people to
return value back to those communities, is to make sure the
people who are accessing the data also represent them, and we can
build diversity within that researcher workforce. So, since our
data was first released in 2020, we have recognised that the
biomedical workforce also has a huge group of underrepresented
individuals, and a lot of our researcher engagement and
researcher outreach has focused on reaching those of diverse
backgrounds and career paths.  


To that end we have reached out and engaged historically black
colleges as well as other minority serving institutions, really
looking to make sure that their students and researchers can have
the same access as more traditional research-based institutions
in the US system.   


That has been important because our system is built on
cloud-based architecture and shared data that doesn’t require a
huge cluster on campus, and that helps remove a barrier that some
of those institutions and researchers may have had. We also know
they haven’t been able to participate in the past, and we think
that cloud architecture again can make the data much more
feasible and be a huge support to diversifying the researcher
workforce as we go forward. That circling back, helping them be
the voices speaking to their community, helps build out that
diverse participant community base as well.   


Natalie: That’s such an important point, because it is not just
about the participants and the data you can collect, but also who
is able to look at it? Who is actually able to undertake the
research?   


Naomi, can I bring you in here? I know that UK Biobank has been
thinking a lot about researcher access to data and trying to
ensure that the data that you hold, the really rich datasets you
hold in UK Biobank, are more accessible to researchers from
different backgrounds who may not have the same level of
resources. Can you tell us a little bit about the work you have
been doing on that?  


Naomi: Yeah. So, just following on from what Andrea said, it is
really important to get as diverse ideas as possible from across
the global research community to really move public health
forward.  


So, what UK Biobank has done is we are putting mechanisms in
place so that early career students, and career researchers, and
researchers at all levels of their career from lower income
countries, can access the data at a much lower fee. So, currently
for most researchers it costs about £9,000 to access all of the
data. So, that is 40 petabytes of genomic data, biomarkers,
clinical outcomes, lifestyle factors and so on. So, early career
researchers and those in lower income countries, it is about
£500.  


On top of that a group of big pharmaceutical companies have got
together to create a global researcher access fund, which
essentially covers this reduced fee so that all researchers no
matter where they are from have exactly the same opportunity to
access the data to advanced scientific discoveries. So, on top of
that all our researchers now use our online secure research
analysis platform. While there is no charge to access the
platform, there are costs associated with compute needed to
analyse and store the results.   


So, AWS have donated research credits for early career
researchers and those from lower income countries up to a total
of about $500,000 per year, to use the research platform. So,
researchers can apply to use these research credits to offset the
costs of compute and storage. So, that means that we are trying
to democratise access to researchers from all around the world.
 


I think actually our biggest challenge is not so much … we have
largely dealt with you know subsidising the cost. It is actually
making researchers from lower income countries aware that these
resources exist, and that are applicable to them.  


So, sometimes we hear from say researchers in Africa or South
America, “Well, there is no point accessing UK Biobank because it
is not relevant to our population.” You know, a third of our
researchers are from China. So, even if UK Biobank hasn’t got
coverage of those racial ethnic populations, that doesn’t mean
that the associations that you find between risk factors and
disease risk are not applicable to other different populations.
And that is also why having different resources like UK Biobank,
like Our Future Health, like All of Us, in different populations
around the world, is so important in order to replicate those
findings.   


Natalie: Absolutely, and fantastic just to hear the attention
that is being paid to trying to ensure that diversity of
different types of researchers who will just bring different
questions to the table, different perspectives on the data,
different priorities, different types of
questions.   


So, speaking about that diversity of researchers, one really
important part of his ecosystem that we haven’t really touched on
so far is around the role of industry. There are a lot of really
important research questions being addressed by industry. Some
that can only really come from, maybe it is pharmaceuticals,
maybe it is tech.  


From your perspectives, what kind of role can and should industry
and commercial partners play in supporting the kinds of long-term
research studies that you have set up, and ultimately trying to
get to that point of sort of generating benefits back to patients
and health systems. Naomi, can I start with you, for that sort of
longer-term perspective for Biobank?  


Naomi: So, industry are great partners for long-term studies like
ours because they can bring additional funding, expertise, and
technology. So, for UK Biobank, because it is so easily
accessible to industry and academics alike on exactly the same
terms, what it has meant is that industry, particularly big
pharma and also now big tech, they can access the data, they see
the value of the data for their own research purposes, and then
they have invested into UK Biobank to do whole-exome sequencing,
whole genome sequencing, proteomics at scale to increase the
value of the dataset for their own drug discovery
pipelines.  


But of course, it means that the data that they have generated,
which cost millions of dollars to generate, when you need deep
pockets to do these kinds of study enhancements, then become
available to all researchers. So, having access to these
large-scale resources that have deep data on genomics, physical
measures, other biomarkers, and clinical outcomes enables pharma
to rapidly increase their drug discovery pipelines in generating
new drugs and treatments for patients, and also those data are
then shared with the rest of the global research
community.   


 So, we found it to be a really exciting win/win in which
industry get what they need to help move forward new drug targets
and discovery, but also other researchers get what they need in
order to make other scientific discoveries in different fields of
research.       


Natalie: Thank you. And Raghib, I know that for Our Future
Health, that industry relationship is a really important part of
the founding model. Will you tell us a little bit about how you
are engaging and working with industry partners?  


Raghib: Sure. So, as you said Our Future Health was set up in a
different way, as a very public private partnership. Although the
largest funder is the UK Government, more than half of our
funding has come from a combination of life science companies, so
pharmaceutical, diagnostic companies, as well as the medical
charities, so the larger medical charities in the UK. That
partnership is deliberate for all the reasons that Naomi has
outlined. There are areas where academia and the NHS are very
strong, and areas where industry is very strong, and by working
together as we saw very good examples during the pandemic with
the vaccine and diagnostic tests etc, that collaboration between
the NHS and academia industry leads to much more rapid and wider
benefits for our patients and hopefully in the future for the
population as a whole in terms of early detection and prevention
of disease. So, we have 16 life sciences companies that have
joined as founding partners with Our Future Health who have
contributed financially to the programme.   


Equally importantly they have also contributed scientifically, so
there is a huge amount of scientific expertise in industry, and
they work with us with our Scientific Advisory Board with our
scientists internally to think about the best use of the resource
for drug discovery, diagnostics, new medical technologies, and
new targets etc.   


So, that is the vision, and so far, it is working well. It is a
relatively new model to have set up a project like this in this
way, but it has been a very collaborative approach, and we all
recognise, all have similar aims, so recognise what we are
working towards. You know, we meet regularly. We have a Joint
Founders Board where as I say academia, NHS, industry, and the
charities come together to decide on the priorities for the
coming years.  


Natalie: Fantastic. And Andrea, I suppose in the US it might be
slightly different culturally from the UK, but the role of
industry with All of Us, how are you engaging with those
pharmaceutical, technology bodies, and partners as
well?   


 Andrea: Absolutely, and maybe this goes back a bit to your
first question. We at All of Us love learning from UK Biobank and
have really seen them forge a lot of wonderful partnerships that
have enriched and developed their dataset. We at All of Us have
started with academia and working through partnership
opportunities really intramurally at intramural centres that make
up parts of the National Institute of Health. We believe that
building on those close friends and family relationships we have
both in the government and academia get us through our first step
to be able to interface with commercial organisations. That
really started with taking the first step this year to ensure
broad availability of data that can maximise both use of the data
available, as well as look forward to our partnership
opportunities in the future.  


So, commercial organisations as of 2024 have also been able to
access the All of Us dataset that is that first step in thinking
about what a partnership would be, and we are glad to build on
the access that international organisations and academic
organisations already have.  


Natalie: A lot to look forward to here. We are going to have to
wrap up in a moment, so I’d just like to leave you all with a
final question before we have to end the podcast. There is huge
ambition in all of the research programmes that you are leading
and involved in, but what are you most excited about coming down
the line in the next few years? What do you think is going to be
feasible? What really gets you excited about the work that you
are doing and where you see the potential benefits really landing
in the next few years? Andrea, would you like to
start?  


Andrea: Thanks. There is a lot we are really excited about. I
haven’t had a chance yet to mention our paediatric cohort, and
that in addition to expanding access for international research,
in 2024 we were able to enrol our first paediatric participants.
That really sets up the potential to observe participants across
the lifespan. That is a huge advance for All of Us and we are
excited about the paediatric work going
forward.   


Natalie: I love that, how do you come into the future with us?
That is fantastic. Naomi.  


Naomi: Yeah, if I had to choose one would be the possibility of
being able to measure circulating proteins on all half a million
participants. We have done this on about 55,000 participants, and
just that subset alone is already generating fascinating insights
for early biomarkers for disease through protein profiles and
risk prediction of disease. I think having that on all half a
million coupled with their genomics data and health outcomes,
will bring a sea change in how we diagnose disease earlier. So, I
think that is a really exciting avenue for us to go into over the
next couple of years.  


Natalie: Really enriching. That data sounds like a very exciting
set of possibilities. Raghib.  


Raghib: Thank you. There are so many opportunities here, but I
will just maybe mention 3. So, the first, in terms of being able
to combine the genetic data that we are collecting and all the
other information about risk factors, and particularly the fact
that we have this on a lot of young people, will enable us to
identify people at high risk of diseases in the presymptomatic
phase and then to be able to offer them both feedback about their
risk of disease but also interventions that can change their
natural incidences. That has never really been possible before.
That is extremely important for all diseases for people, but also
it is very important for our healthcare system.  


So, those of you listening in the UK, I know the NHS is under a
huge amount of pressure, and the current model of healthcare
which has been in place really since the inception of the NHS, is
to treat late-stage disease when people have already developed
symptoms and signs. You know, it wasn’t really possible to
identify people earlier, but it is now, and Our Future Health
will provide the evidence base to show that prevention really is
better than cure, and to show that these approaches both lead to
better clinical outcomes, but also are cost effective and a good
use of resources. Of course, the new government is very much
committed to this as well, you know moving from acute care to
prevention, from hospitals to community, and from analogue to
digital.    


Finally, because our cohort has now become so large and does
cover every part of the UK, and this wasn’t something I
necessarily thought about when we started Our Future Health, we
are able to have unique insights into the health of the
population across every age group, across every ethnic group,
across every geographical area, and by deprivation, and to
understand not just observationally in terms of risk factors, but
also the impact of interventions on those different
populations.  


We can look at that, as I said at an individual level on millions
of people to gain intelligence about what is going on in terms of
public health, but also to see what will hopefully improve their
health in the future. So, there are really, you know I have
described transformational opportunities to improve health
through both biomedical research and populational health insights
now through the resource, and I look forward to working with
colleagues across the UK and globally to deliver
them.  


Natalie: We will wrap up there. Thank you so much to our guests,
Dr Raghib Ali, Professor Naomi Allen, and Dr Andrea Ramírez for
joining me today as we discussed how collaboration, scale,
ongoing engagement, can really unlock the potential of
large-scale health datasets to drive brilliant new research and
ultimately improve the lives of patients and the population.
 


If you would like to hear more like this, please subscribe to
Behind the Genes on your favourite podcast app. Thank you for
listening. I have been your host, Natalie Banner. This podcast
was edited by Bill Griffin at Ventoux Digital and produced by
Naimah Callachand.