#56. D-CYPHR: The Power of Spit - Dr. Anna Moore and Elizabeth Mordey

"You’re a hero. It’s in your DNA." The NHS and NIHR BioResource has started a nationwide movement for ages 0 - 15 to help health research.

Dr. Anna Moore, University of Cambridge, and Elizabeth Mordey of the DNA, Children + Young People's Health Resource (D-CYPHR) talk about the project and how it has the potential to revolutionize healthcare in the UK and around the world.. 

By studying thousands of DNA samples together with health information, scientists can begin to see the big picture of how our genetics and our environment influence our health. 

All kids need to do is spit in a tube.

Further details: https://bioresource.nihr.ac.uk/d-cyphr/

Contact D-CYPHR: dcyphr@bioresource.nihr.ac.uk

Dr. Anna Moore: https://neuroscience.cam.ac.uk/member/am2708/

Chapters

• 0:00 Introduction to Dr. Anna Moore and Elizabeth Mordey
• 13:16 Genetic Data, Anonymity and How D-CYPHR uses information
• 24:12 D-CYPHR: Beginnings, Impact and Growth
• 42:38 Opportunities the project presents for everyone.
• 53:14 Improving Mental Health Outcomes for Children
• 1:13:18 Wrap up

Transcript

(00:00:03):
Welcome back to the Smooth Brain Society.

(00:00:06):
Today, we will be talking about a program called Decipher.

(00:00:10):
So that's D-C-Y-P-H-R.

(00:00:13):
It's the world's first national childhood DNA health research program.

(00:00:19):
The program is led by Dr. Anna Moore.

(00:00:22):
Dr.

(00:00:22):
Anna Moore is Assistant Professor in Child Psychiatry and Medical Informatics in

(00:00:28):
the Department of Psychiatry at the University of Cambridge.

(00:00:32):
She is also the consultant psychiatrist at Cambridgeshire and Peterborough NHS

(00:00:38):
Foundation Trust.

(00:00:39):
She is a Future Leaders Research Fellow and has with a focus on artificial

(00:00:45):
intelligence and mental health.

(00:00:48):
Like I said, she's the clinical lead of the Decipher project.

(00:00:50):
So welcome, Professor Anna, or is it Dr. Anna?

(00:00:55):
How does it work here in the UK?

(00:00:56):
Dr. Anna.

(00:00:57):
Dr. Anna.

(00:01:03):
And joining her today,

(00:01:07):
so as for people who don't know how the podcast works,

(00:01:11):
generally speaking,

(00:01:12):
we have a co-host on who has no clue about the topic.

(00:01:16):
In this case, I have no clue about the project and I'm the one who's going to be learning a lot.

(00:01:20):
So we've kindly got Lizzie Morday, Elizabeth Morday, to co-host.

(00:01:26):
She is the senior study coordinator of the Decipher project.

(00:01:29):
So she's going to be talking, helping us through...

(00:01:34):
this conversation here.

(00:01:36):
It's really interesting because as a study coordinator,

(00:01:39):
she might actually know more about the internal workings of the project than Dr.

(00:01:43):
Moore would,

(00:01:44):
but I'm hoping that together it'll be a fun conversation that you can learn a lot

(00:01:49):
about Decipher.

(00:01:50):
So welcome, Lizzie.

(00:01:51):
Welcome, Anna.

(00:01:53):
Thank you for joining.

(00:01:53):
Anna, thank you so much.

(00:01:56):
It's a real pleasure to be here and have the opportunity to talk about the project.

(00:01:59):
So thank you.

(00:02:03):
All right.

(00:02:03):
So first question,

(00:02:04):
I guess,

(00:02:05):
to both of you,

(00:02:05):
you guys heard the sort of more professional introductions,

(00:02:08):
but for our listeners,

(00:02:10):
if you were to introduce yourselves,

(00:02:14):
how would you guys do that?

(00:02:15):
So maybe Anna first and then Lizzie.

(00:02:18):
So I'm a child psychiatrist and I look after children at Addenbrooke's Hospital in

(00:02:24):
Cambridge clinically where I'm a consultant and there I'm what we call a liaison

(00:02:31):
child psychiatrist.

(00:02:32):
So

(00:02:33):
it's the kind of interface between mental health and physical health.

(00:02:37):
So all the children I look after are either young people who are Adam Brooks and

(00:02:43):
they've got long-term illnesses or quite difficult illnesses,

(00:02:46):
so for example,

(00:02:46):
chronic leukemias or muscular dystrophy or any other range of problems.

(00:02:51):
And then we look after the mental health problems,

(00:02:53):
because obviously lots of children struggle with anxiety,

(00:02:56):
depression as a result of those disorders.

(00:02:59):
And then the other side of it is children who present with what we all think

(00:03:04):
initially is a physical health problem.

(00:03:06):
So it might be migraines or epilepsy type symptoms or stomach or gastric problems.

(00:03:12):
But then when we understand a bit more about what's going on,

(00:03:16):
it becomes clear that actually it's not a classic example of epilepsy or gastric problems,

(00:03:21):
but maybe it's what we would call their functional problems.

(00:03:24):
So they've got a...

(00:03:27):
an explanation that might be partly psychiatric in its origin or neurological.

(00:03:34):
So those are the kind of two cohorts I look after clinically.

(00:03:38):
And then academically,

(00:03:41):
I'm running a programme which is partly this Decipher programme,

(00:03:46):
which is trying to really think about how we can promote paediatric research with

(00:03:53):
genetic focus.

(00:03:54):
And then the other element of this

(00:03:57):
Again,

(00:03:57):
linked to my mental health kind of work is thinking about how we can improve mental

(00:04:03):
health systems for children who've experienced mental health problems.

(00:04:06):
Because as we all know,

(00:04:07):
child mental health services or CAMHS in this country is really struggling.

(00:04:11):
So we're thinking about how we can make those more efficient, how we can make them run better.

(00:04:17):
Oh, very nice.

(00:04:18):
That's very interesting.

(00:04:20):
Hopefully we can touch on all these aspects a little bit as the conversation goes further.

(00:04:25):
And yeah, of course, Lizzie.

(00:04:27):
Yeah, so as you said, I'm senior study coordinator for Decipher.

(00:04:32):
So a study coordinator role is similar to kind of like a project management role.

(00:04:38):
It's essentially just making sure the research program or the study that you're working on

(00:04:43):
It's all running smoothly,

(00:04:44):
so my team work behind the scenes for all the operational aspects of Decipher.

(00:04:51):
So making sure if we're recruiting through NHS sites and hospitals,

(00:04:56):
we're setting those up,

(00:04:58):
training the staff,

(00:05:00):
making sure that everything's done according to ethical guidelines and other kind

(00:05:07):
of research guidelines we have here in the UK.

(00:05:10):
And we're also the team responsible for kind of speaking to everyone who has

(00:05:15):
questions about Decipher.

(00:05:16):
So if someone was to call us or email the Decipher inbox, it would be my team that answers.

(00:05:23):
So we're here to help really with any of those questions.

(00:05:27):
And we're also the team that's sending out all the information and packs and stuff

(00:05:32):
that go out to families at home.

(00:05:34):
So working very hard with a production line there of lots of families taking part.

(00:05:39):
So lots of packs going out.

(00:05:41):
So that's really what we're doing.

(00:05:45):
Awesome.

(00:05:47):
All right.

(00:05:47):
So then first question from me, what is Decipher?

(00:05:53):
just stated the tagline at the beginning but if you guys could go into detail of

(00:05:57):
what the program actually is.

(00:05:59):
Yeah I'm happy to go.

(00:06:00):
Decipher stands for the DNA Children and Young People's Health Resource so it is a

(00:06:09):
research program as Anna said focusing on kind of anything to do with childhood

(00:06:14):
health research so we are trying to make it easier for families in the UK to get

(00:06:20):
involved with health research

(00:06:24):
A lot of research in the UK happens with adults,

(00:06:27):
but not much involving children and young people.

(00:06:30):
So that's a real gap at the moment in the research that's done here in the UK.

(00:06:36):
So it's led by the NIHR by resource and the NIHR is kind of like the research arm

(00:06:45):
of the NHS,

(00:06:47):
which we have here.

(00:06:49):
So, yeah, we're just trying to make it easier for families to get involved.

(00:06:54):
In health research, really, that's the aim.

(00:07:00):
Yeah, I think one of the, thank you, that's exactly right, obviously.

(00:07:04):
But one of the key things that's really exciting about how Decipher is set up as

(00:07:10):
well is that there's different ways you can run research studies.

(00:07:15):
So you can either be a researcher who gets a grant and does a piece of research and recruits

(00:07:22):
people and to participate in that study and then at the end of the study we say

(00:07:26):
thank you very much and kind of use the data and that the the findings go and kind

(00:07:30):
of really promote research but the really key thing about deciphering the exciting

(00:07:35):
thing about how the NIHR bioresource is set up is it's what we call a recallable

(00:07:41):
resource and what that means is that rather than recruiting into a single research

(00:07:45):
study

(00:07:46):
we're recruiting a community of young people and their families in this case,

(00:07:50):
but by resource generally it's adults as well,

(00:07:54):
who are saying actually we're really keen to participate in research generally.

(00:07:59):
So they joined Decipher and we kind of take some standard baseline information.

(00:08:03):
So we take a genetic sample,

(00:08:04):
we ask questionnaires,

(00:08:05):
we get permission to get access to health and records for particular studies,

(00:08:12):
to get information for those studies.

(00:08:14):
But

(00:08:15):
it's a fantastic resource because there's a community of people saying actually

(00:08:18):
it's not just one study we want to do but we want to keep getting involved in more

(00:08:21):
studies and one of the reasons this is absolutely you know critical for children's

(00:08:25):
mental health sorry children's health in general is because actually one of the big

(00:08:29):
barriers to doing paediatric research is the challenge that scientists have in

(00:08:34):
contacting young people through families and recruiting and navigating the

(00:08:39):
challenges you know the practical challenges involving children in research so what

(00:08:45):
decipher and the bioresource have been really clever about doing is creating this

(00:08:48):
platform where all of that is addressed and so scientists would come to the

(00:08:54):
bioresource and say you know I want to do a study for example an asthma or diabetes

(00:08:58):
in children and young people and they've already got this pool of children and

(00:09:03):
young people who've already said that they want to do research and have already

(00:09:07):
provided the baseline information that they can then explore their details to kind

(00:09:11):
of create the ideal scientific cohorts so

(00:09:15):
It's this really fabulous resource that's going to really make paediatric research much,

(00:09:20):
much quicker and easier,

(00:09:22):
cost effective.

(00:09:24):
And so it's an exciting step change in how we're doing research for children in the UK.

(00:09:31):
I wanted to ask,

(00:09:32):
how is this different from,

(00:09:35):
for example,

(00:09:38):
say,

(00:09:38):
you know,

(00:09:39):
those childhood cohort studies,

(00:09:40):
you know,

(00:09:40):
where we,

(00:09:42):
I think a famous study is millennium study,

(00:09:44):
right?

(00:09:44):
Where there's lots of kids from childhood, basically from birth have been followed through.

(00:09:50):
And I know there's studies in Finland.

(00:09:53):
us new zealand had one the dunedin child study um there's so how is this sort of

(00:09:59):
different because i feel if you collect data in children and you have them as a

(00:10:03):
resource other people later can take it in these studies as well so how does this

(00:10:07):
stand out yeah there's loads of important things they're born in bradford um else

(00:10:11):
back or other examples in the uk um the way that they're different is that um

(00:10:15):
that's almost like an example of the first type of study i described so

(00:10:19):
a set of, you know, really amazing scientific groups.

(00:10:23):
People who run those programmes are fantastic, but they've got a particular purpose in mind.

(00:10:28):
And at the beginning,

(00:10:30):
they're saying,

(00:10:30):
we want to study child development or we want to study a particular problem like

(00:10:36):
neurological development.

(00:10:37):
So what they apply for is they get the funding to recruit these young,

(00:10:41):
these families,

(00:10:42):
and then they do specific pre-specified tests along the way,

(00:10:48):
as it were,

(00:10:50):
And there's this fantastic data set,

(00:10:51):
but those children can't be contacted by other scientific teams.

(00:10:57):
Whereas with Decipher,

(00:10:58):
we've created this cohort and actually comparatively,

(00:11:02):
the amount of data that we're collecting at the front end is less actually.

(00:11:05):
So we're just getting one sliver sample plus one set of questionnaires.

(00:11:10):
And that gives us what we call phenotyping.

(00:11:12):
So phenotype is the kind of characteristics of somebody.

(00:11:17):
So I've got red hair.

(00:11:19):
I've got very pale skin.

(00:11:21):
You know, those are kind of phenotypes.

(00:11:22):
I've got type two diabetes I might have.

(00:11:26):
That might be a phenotype.

(00:11:29):
So we get that kind of information plus genomic information at the beginning.

(00:11:34):
But we say,

(00:11:35):
actually,

(00:11:35):
we're not going to have any limitations on what science you can do with this resource.

(00:11:41):
So a scientist might come and say, actually, I've got an asthma study.

(00:11:45):
They might have a cancer study.

(00:11:46):
They might have a,

(00:11:47):
mental health study.

(00:11:48):
They might be looking to do a drug study.

(00:11:52):
They might be looking to build an AI tool, for example.

(00:11:56):
They need to get the ethical permission to do that research.

(00:11:59):
And that's their ethics that they apply for.

(00:12:02):
But once they've got ethics, they can come to us.

(00:12:04):
And then we can approach the people who have joined Decipher and say,

(00:12:10):
we've got this study on diabetes.

(00:12:14):
You are eligible for it.

(00:12:16):
would you like to know more information about it?

(00:12:18):
And if you would,

(00:12:19):
then we can link them up to that study and they can then participate in that study.

(00:12:23):
So there's a huge,

(00:12:24):
I mean,

(00:12:25):
the amount of variety and variation in the science that you can do with Decipher is just,

(00:12:31):
it's vast,

(00:12:31):
you know,

(00:12:32):
it's infinite,

(00:12:33):
but it's,

(00:12:33):
you know,

(00:12:33):
it's vast in terms of what you can achieve with it.

(00:12:36):
So it's just,

(00:12:37):
it's not as limited and it's not,

(00:12:38):
it's not to say that the other studies aren't fantastic.

(00:12:40):
They are,

(00:12:41):
and they've had created incredibly valuable resources that have created a huge

(00:12:45):
amount of learning.

(00:12:46):
They just set up slightly differently.

(00:12:48):
So you can't contact.

(00:12:49):
So other people can't contact the participants in the first type of study,

(00:12:54):
whereas other scientists can contact with permission the people in our study,

(00:13:00):
which is the key difference.

(00:13:01):
So it's a variety of research that can be done.

(00:13:05):
OK,

(00:13:05):
yeah,

(00:13:05):
that clears it up quite a bit in terms of what sort of like the flexibility it

(00:13:11):
allows sort of more than anything else.

(00:13:16):
I wanted to also touch on a few of the concepts as well before we went forward.

(00:13:19):
So when you said you said you're taking genetic data, what are we talking about here?

(00:13:23):
What do we mean when we say genetic data for someone who doesn't do genetics?

(00:13:28):
So there's different ways of looking at it.

(00:13:31):
So one way is the sample type.

(00:13:33):
So now genetics are in every part of our body.

(00:13:35):
So you could take samples from technically, you could take samples of hair, skin, blood.

(00:13:40):
Blood is most often what's taken from these samples.

(00:13:43):
But

(00:13:44):
Because we're working with children from birth,

(00:13:48):
it's not,

(00:13:48):
and we're doing it with members of the general population,

(00:13:52):
many of whom don't have illnesses.

(00:13:55):
For us, it didn't feel appropriate to be taking blood samples once it makes a recruitment.

(00:14:00):
So if you've got to come and have a blood and more expensive,

(00:14:03):
and actually you can get genetics from cells inside of your cheeks,

(00:14:07):
which are in your saliva.

(00:14:09):
So in terms of what it means from a practical perspective,

(00:14:12):
we collect a saliva sample for most of the patients or young people.

(00:14:16):
Many aren't patients.

(00:14:17):
So about 50% of people have got no contact with no health disorder.

(00:14:23):
So we take a sample of saliva from the young person and then that gets stored as a sample.

(00:14:29):
And then what we do do is we do a baseline test of that, which we collect for everyone.

(00:14:36):
So it's a Fischer microarray.

(00:14:38):
which means that we do is kind of a mid-level kind of amount of detail that you can

(00:14:43):
get from a genomic sample.

(00:14:44):
So it's not the same as doing a whole genome sequence,

(00:14:46):
which is when you sequence all of the genomes,

(00:14:50):
but it gives us information about the genetic code for quite a significant

(00:14:54):
proportion of the DNA.

(00:14:56):
And it's the proportions where we know through evidence today that there's most

(00:15:00):
likely to be significant information about health and illness.

(00:15:04):
So that's the baseline information.

(00:15:06):
And then if when scientists want to do specific research,

(00:15:09):
they can request to use a bit of the sample to do maybe more in detail genomic data

(00:15:15):
or epigenetics,

(00:15:16):
maybe things like that on the samples.

(00:15:21):
Okay.

(00:15:21):
So for example,

(00:15:22):
when you said you're looking at certain specific genomes or genes,

(00:15:28):
for example,

(00:15:29):
you can see for like risk of cancer,

(00:15:32):
risk of certain cancers or seeing if kids have

(00:15:35):
genes for certain things like that.

(00:15:37):
Yeah.

(00:15:37):
Like you said, for diabetes or whatever.

(00:15:41):
Does that mean that any of your participants can also sort of,

(00:15:45):
is there a clinical aspect to it where sort of your participants can also get

(00:15:48):
information or is this sort of anonymous in how you do it?

(00:15:53):
Yeah, I'll answer that.

(00:15:54):
So it's not anonymous because anonymous means there's no way to link that person

(00:16:03):
with that sample.

(00:16:05):
We call it being depersonalised.

(00:16:08):
So what that means in practice is if a researcher was using the sample,

(00:16:14):
they wouldn't know who that person is.

(00:16:16):
The sample just has a unique code.

(00:16:21):
But we in the bioresource team, for practical reasons, need to know

(00:16:28):
which participants are which sample.

(00:16:30):
So there is a link that exists somewhere.

(00:16:34):
But for the purpose of the researchers who are using those samples,

(00:16:38):
it's kind of doesn't have names and addresses or any way to kind of know who that

(00:16:46):
person is on an individual basis.

(00:16:50):
We don't provide feedback to the participants about their genetic information.

(00:16:58):
And the reason for that is in the UK and I'm sure lots of other places,

(00:17:03):
the purpose at the point of giving your sample,

(00:17:07):
the purpose you gave your sample for is only what it can ever be used for.

(00:17:12):
So because the research participants are giving a sample for research purposes,

(00:17:18):
that sample then can't be used for diagnostic purposes.

(00:17:24):
I think anyone who ever has had a genetic test in the UK through the NHS,

(00:17:29):
for example,

(00:17:30):
they will have signed a consent form at the time to have that genetic testing done.

(00:17:36):
And that consent is given for kind of diagnostic testing, but they're different.

(00:17:42):
You'd have to consent again for something to be used.

(00:17:46):
And also we kind of in the research team,

(00:17:49):
my team,

(00:17:50):
operationally,

(00:17:50):
we're not kind of trained up to be genetic counsellors and things like that.

(00:17:55):
So really,

(00:17:56):
it wouldn't be super appropriate for us to be giving advice and feedback to

(00:18:01):
participants about their genetic information.

(00:18:04):
So that's the reasoning.

(00:18:05):
Of course, yeah.

(00:18:06):
No, that makes complete sense.

(00:18:08):
And I think that's one of the really critical things with this is that, you know,

(00:18:14):
Increasingly,

(00:18:15):
our genetics is going to just shed so much light and information about us and

(00:18:22):
increasingly what we're predisposed to.

(00:18:26):
And that's really critical information that is really helpful in one way to help us

(00:18:32):
make decisions about our health.

(00:18:35):
So for example, if I'm more predisposed to type 2 diabetes,

(00:18:38):
a good way of avoiding that is to think really carefully about my diet and exercise now,

(00:18:42):
not smoke as much,

(00:18:44):
for example.

(00:18:45):
However,

(00:18:45):
for some people,

(00:18:46):
it's going to have some really critical information about what may or may not

(00:18:52):
happen to them,

(00:18:53):
for example,

(00:18:53):
if they're more prone to certain types of cancers.

(00:18:56):
And the difficulty that we've got in a research programme is that we just don't

(00:19:00):
have the facility to be able to provide the in-depth level of genetic counselling

(00:19:05):
and health counselling that you'd need,

(00:19:07):
and also

(00:19:08):
there's a clinical responsibility to then plug people into appropriate clinical

(00:19:13):
systems if we were to,

(00:19:15):
you know,

(00:19:15):
discover that they had,

(00:19:16):
like,

(00:19:17):
the priest position in particular,

(00:19:20):
you know,

(00:19:20):
more worrying problems.

(00:19:21):
And so as a result of that,

(00:19:22):
it's just not appropriate for us to be sharing that information and having what

(00:19:26):
would become a clinical relationship with the people who are contributing to the

(00:19:30):
research programme.

(00:19:31):
So that's the reason why our programme's not set up like that.

(00:19:34):
So, I mean, some are, but there tend to be

(00:19:37):
programmes that are set up in clinical systems led within a single clinical unit

(00:19:43):
and then they're plugged into their clinical genetics programmes but we just don't

(00:19:46):
have the facility to do that in this programme so that's why we don't do it.

(00:19:54):
I know this is getting slightly off topic,

(00:19:56):
but do you think sort of,

(00:20:00):
because you said NIHR is sort of like the research wing of the NHS,

(00:20:05):
do you think there is room for that sort of better integration so that,

(00:20:09):
I mean,

(00:20:09):
you're getting into a sort of,

(00:20:12):
burden of knowledge kind of area here where if you if you pick up a child with a

(00:20:18):
certain genetic predisposition of of potentially a disorder which is purely genetic

(00:20:25):
um and then you needing to feed that back of having some sort of mechanism to

(00:20:30):
funnel it through the diagnostic route or through the nhs health route um yeah so

(00:20:36):
just your thoughts and opinions on that yeah i think um

(00:20:40):
The kind of basic level of testing that we run at the start that Anna described is

(00:20:46):
not super detailed in terms of specific risk factors for certain conditions.

(00:20:53):
So then obviously,

(00:20:54):
if researchers are applying to use those samples and doing much more in depth work

(00:20:59):
in a specific disease area,

(00:21:00):
for example,

(00:21:02):
they may or may not have a mechanism through their research ethics for informing

(00:21:08):
the participants if they're looking into something super specific.

(00:21:13):
Or in a lot of cases,

(00:21:15):
they might be looking into a specific genetic link,

(00:21:17):
but it could be many years of lots of research before we kind of accept that as a

(00:21:24):
known genetic risk factor that then will eventually

(00:21:28):
filter into how the NHS works and how they diagnose patients.

(00:21:32):
So even though lots of researchers are looking into genetics,

(00:21:37):
it's kind of a bit risky to say,

(00:21:39):
oh,

(00:21:39):
that's definitely a risk factor or definitely a cause before we've done the

(00:21:45):
extensive research that we're kind of trying to do.

(00:21:48):
So it's just making sure that we don't worry people unnecessarily when actually the

(00:21:55):
evidence isn't there yet as well.

(00:21:58):
And also,

(00:21:58):
actually,

(00:21:59):
there's a real emphasis on that the NIHR is involved in thinking about how can we

(00:22:05):
expedite basic research into clinical practice.

(00:22:08):
And the NIHR has whole institutions and organisations that focus on that.

(00:22:12):
And so there's kind of different parts of the NIHR are responsible for different

(00:22:16):
parts of the pathway,

(00:22:17):
the academic pathway.

(00:22:18):
So we're kind of very much in the basic science end.

(00:22:21):
But then there's something called the NIHR Applied Research Collaborations,

(00:22:26):
which function nationally.

(00:22:28):
And their role,

(00:22:28):
for example,

(00:22:29):
is to think about how do you pick up that basic science and get it implemented and

(00:22:35):
used in daily practice and clinical systems.

(00:22:38):
So it's almost like that is an important part of the whole process that the NIHR is

(00:22:44):
heavily involved in across the pathway.

(00:22:46):
But it's almost like we all have our own kind of roles in that pathway.

(00:22:51):
And ours is kind of more the basic science and the other parts of the NIHR,

(00:22:54):
which are integrated.

(00:22:57):
pick up that information and then then um are responsible for its implementation so

(00:23:01):
we are kind of past the past the ball as it were to the guys who are then making it

(00:23:06):
reality on the ground so yeah i i like both of your answers because it sort of

(00:23:14):
shows how um i guess my sort of conceptualization of it being as as someone outside

(00:23:22):
being that

(00:23:23):
why can't we have these cures and this and that?

(00:23:26):
Or if you know something, why can't we be told it?

(00:23:29):
But then from a scientific perspective,

(00:23:30):
from a research perspective,

(00:23:32):
it's not that clear yet or that sort of a lot of research needs to be done.

(00:23:36):
There's lots of processes which are required and you cannot just go about saying

(00:23:41):
things when you don't have the facilities to sort of back that up.

(00:23:45):
Like you said,

(00:23:45):
needing genetic counselors,

(00:23:46):
needing health counselors as all those teams needing to be prepared and ready

(00:23:52):
for a situation uh in order to provide the best care as opposed to just saying

(00:23:57):
something and worrying people more than they need to be um so thank you for that

(00:24:02):
then thank you for going on that little segue with me uh let's come back to the

(00:24:09):
actual decipher program um so i maybe we could go at it like on a sort of journey

(00:24:17):
as to

(00:24:18):
First, how did this idea come about?

(00:24:21):
Anna,

(00:24:21):
as the lead,

(00:24:22):
maybe you can tell what sort of drove this idea that this would be a good way and

(00:24:29):
how you got buy-in into it.

(00:24:31):
Well, I mean, the buyer resource has been running for, I think, 13, 15 years now.

(00:24:35):
So that's certainly not in any way my idea.

(00:24:38):
So the NIHR buyer resource.

(00:24:40):
And as we say, that was set up as a kind of a function to,

(00:24:46):
make genetics research with particular disease focuses possible.

(00:24:53):
So there's,

(00:24:53):
for example,

(00:24:54):
been a COVID cohort,

(00:24:55):
there's a liver cohort,

(00:24:58):
there's IBD cohorts,

(00:25:01):
sorry,

(00:25:01):
inflammatory bowel disease cohorts.

(00:25:04):
And they've just been demonstrating to me fantastic resources which have generated

(00:25:08):
and enabled some really important discoveries.

(00:25:12):
So as I was setting out

(00:25:14):
about five or six years ago to think about how I could figure out some of the

(00:25:17):
challenges around children's mental health it became really clear that we needed a

(00:25:22):
similar cohort for children which was recallable so not something led by a single

(00:25:27):
person and just used for their own research purposes and yes the data might be

(00:25:33):
available for others to use but essentially it's quite narrow its focus it struck

(00:25:39):
me that we

(00:25:40):
we really needed something for children and paediatrics.

(00:25:44):
And at the same time,

(00:25:45):
John and Natalie who lead the Bioresource were thinking exactly the same thing and

(00:25:49):
we happened.

(00:25:51):
And also the other thing that's why I'm particularly interested in thinking about

(00:25:53):
how we can use not just research data,

(00:25:56):
but the data that's routinely collected in clinical systems about people and how

(00:26:02):
that can be used for research.

(00:26:03):
And so I was very keen to think about how we can create

(00:26:08):
resources that bring together that data,

(00:26:10):
that wealth of data that's created every time you have a contact with a clinician or,

(00:26:15):
you know,

(00:26:16):
of any flavour,

(00:26:16):
any type,

(00:26:17):
how that can be brought together with genomic data and used to really think about

(00:26:22):
how we provide personalised care for children.

(00:26:26):
So I'm in Cambridge and my resource centre is in Cambridge,

(00:26:29):
so we ended up having some conversations.

(00:26:32):
It was just a really lucky happenstance that we were looking to do the same thing.

(00:26:37):
So that's why I joined the bioresource to help lead with Decipher and setting up Decipher.

(00:26:43):
So that's the origin of it.

(00:26:46):
And so it's a resource that will support,

(00:26:51):
you know,

(00:26:51):
all paediatric,

(00:26:52):
well not all,

(00:26:52):
but a wide range of paediatric research going forward.

(00:26:59):
And then I've obviously got a desire to use it for my research.

(00:27:02):
And that's why I've put the time and effort in working alongside John Anathlete and

(00:27:06):
the team obviously as well to set it up.

(00:27:15):
This part really interested me,

(00:27:16):
which you said we're sort of linking clinical data or data from hospitals into the project.

(00:27:22):
So is that part of the resource?

(00:27:24):
So if suppose, like you said, 50% of people

(00:27:28):
or roughly 50% don't have any health conditions.

(00:27:34):
Sorry?

(00:27:34):
Yeah, you're right.

(00:27:35):
They don't have any major health conditions,

(00:27:39):
but the majority of them would have been to their GP.

(00:27:41):
Yeah, of course.

(00:27:42):
Children would have been taken to GPs.

(00:27:44):
So you sort of link that data into your entire Decipher resource.

(00:27:51):
How does that sort of work?

(00:27:52):
Do you connect it back to people who come in voluntarily as well?

(00:27:56):
Yeah, I'm trying to understand how these connections are made.

(00:27:59):
Yeah, absolutely.

(00:28:00):
So when families consent to join the decipher and the bioresource,

(00:28:08):
part of the consent form that the parent will sign is agree.

(00:28:12):
You know, they agree to all aspects, agree to be contacted, agree to give their saliva sample.

(00:28:17):
Another thing they agree to is agreeing for

(00:28:21):
their health records to be accessed, for example.

(00:28:25):
So that's quite a normal thing that if anyone's taken part in a research study as

(00:28:33):
as a person, like for themselves, that's quite often on the consent form.

(00:28:36):
That's very kind of normal in the research world.

(00:28:39):
But a lot of people who haven't taken part in research sometimes think, why is that the case?

(00:28:45):
And as Anna said,

(00:28:47):
the reason for that is because so much information is contained in those records

(00:28:51):
that can be

(00:28:52):
useful to the research question that you're answering.

(00:28:57):
So our participants agree to that.

(00:28:59):
And then a researcher who's applying to.

(00:29:04):
Kind of contact our participants as part of their research ethics.

(00:29:09):
They might have stated that they want to look at health records for a certain

(00:29:14):
reason and that'll be part of the ethics that they kind of get.

(00:29:18):
So that has to be an ethically approved reason.

(00:29:21):
And then when we've asked our participants to take part in the study,

(00:29:26):
then they might also access the records if it's relevant.

(00:29:30):
So an example might be if they're looking at asthma in children,

(00:29:38):
they might stay in their research ethics that they want to look at GP records to

(00:29:42):
see what types of inhalers those children have been prescribed,

(00:29:46):
something like that.

(00:29:47):
So they won't.

(00:29:49):
kind of just get a data dump of the entire health record of that participant but if

(00:29:54):
it's relevant to the research they're doing then they might access those records um

(00:29:59):
for a specific reason and actually from a kind of strategic perspective it's by far

(00:30:06):
the most sensible way of doing things on on all fronts as long as the you know

(00:30:10):
obviously as long as the participant's happy and that is that um one of the things

(00:30:14):
that the barriers to

(00:30:16):
participating in research is actually,

(00:30:18):
although people really want to get involved in research because they want to,

(00:30:21):
generally people want to,

(00:30:22):
you know,

(00:30:22):
help the way it's good,

(00:30:23):
they've also got a life that they need to be able to get on with.

(00:30:26):
And so if they,

(00:30:27):
if we were to be solely dependent on them for every single element of information

(00:30:32):
about their health journey,

(00:30:34):
you know,

(00:30:34):
can you tell us all the times you went to the GP,

(00:30:36):
all the times you went to the hospital,

(00:30:37):
can you go send us all of your letters,

(00:30:39):
what are the outcomes of those,

(00:30:40):
what medications are you on,

(00:30:41):
when have they changed,

(00:30:42):
what are the doses,

(00:30:43):
how did they change,

(00:30:44):
what impact did that have on your health?

(00:30:46):
A,

(00:30:46):
the information from the individual wouldn't be very accurate because a lot of

(00:30:50):
research shows us that individuals recall about that is not necessarily very accurate.

(00:30:56):
And then secondly,

(00:30:57):
that would be a huge amount of time for us to get that information,

(00:31:00):
but also for the participant to give it to us.

(00:31:03):
So using medical records is really cost effective and accurate.

(00:31:08):
way of getting a longitudinal or a large amount of information about kind of

(00:31:13):
practical things,

(00:31:14):
about what,

(00:31:14):
you know,

(00:31:14):
what dose actually worked for that person,

(00:31:17):
what were their side effects,

(00:31:18):
why didn't that work for them,

(00:31:21):
what were the different kind of types of medication they tried for this particular problem,

(00:31:26):
what worked or didn't,

(00:31:27):
as examples.

(00:31:28):
So it's just,

(00:31:29):
it's more effective,

(00:31:30):
but it's also a better,

(00:31:33):
so one of the big elements about considering

(00:31:36):
the ethics and the appropriateness of programmes of research is what's the burden

(00:31:40):
on the participant?

(00:31:41):
Are we asking them for an unreasonable amount of time or effort to participate in this research?

(00:31:47):
And that's a really,

(00:31:48):
really good and effective way to reduce the burden on individuals so that they can

(00:31:52):
contribute and participate without it requiring them to take weeks of holiday.

(00:31:59):
And for children, that's particularly important because they're at school.

(00:32:02):
So, you know, it's really, really critically.

(00:32:04):
And also,

(00:32:04):
well,

(00:32:04):
they're at school and also it's their parents that are providing them information.

(00:32:07):
So it's important that the young people can be at school.

(00:32:10):
That's their first priority.

(00:32:11):
And that there's an accurate way for us to get information via parents.

(00:32:14):
It's not burdened small families.

(00:32:17):
Is there generally an issue in terms of convincing people to give their data?

(00:32:23):
Because I feel nowadays, at least, it's become a pretty big,

(00:32:30):
big thing and I feel health data is probably the most personal data I can get.

(00:32:35):
Yeah,

(00:32:36):
it's really interesting because when we started all this and in particular the

(00:32:39):
health record piece which is what my main kind of focus of interest is,

(00:32:45):
is I had a lot of concern about that and why,

(00:32:50):
you know,

(00:32:50):
reasonable concern but it's interesting we did a lot,

(00:32:53):
we've done a lot of engagement with the public and kind of focus groups and that's

(00:32:57):
with children

(00:32:59):
and parents and guardians,

(00:33:00):
so from as young as 11 up to 24,

(00:33:03):
so children and young people,

(00:33:04):
and then parents and guardians of children of those who have had children.

(00:33:09):
And we look into such an in-depth amount of detail of explaining to them the kinds

(00:33:14):
of data that we'd have access to,

(00:33:16):
you know,

(00:33:18):
really personal stuff,

(00:33:19):
like,

(00:33:19):
you know,

(00:33:19):
when you went to A&E,

(00:33:20):
so it was to talk to teenagers and said,

(00:33:22):
so we'll have access to things potentially,

(00:33:24):
like,

(00:33:25):
you know,

(00:33:25):
you got drunk on the weekend and got so drunk and you end up in A&E,

(00:33:28):
like,

(00:33:29):
because you're drunk so much,

(00:33:30):
that's the kind of information we'll have.

(00:33:31):
And interestingly,

(00:33:33):
once people understood what we were using for and how it was being looked after safely,

(00:33:38):
and the fact that it was de-identified,

(00:33:40):
so we could,

(00:33:41):
nobody,

(00:33:42):
their name is never associated with that,

(00:33:44):
and no information that can ever link to them,

(00:33:46):
So no addresses, no date of births, nothing like that is ever available.

(00:33:53):
They actually were keen to make sure that we had as much detail as we could have

(00:33:57):
because they knew how important that would be for the research and how it makes the

(00:34:00):
research more accurate.

(00:34:01):
And actually,

(00:34:02):
I always remember one outcome of one focus group being the young people saying,

(00:34:06):
actually,

(00:34:07):
is there a way?

(00:34:07):
Our main concern is that the information in the records isn't very accurate.

(00:34:11):
Could we please check it and make it more accurate for you?

(00:34:14):
Because we don't think you've got the right, you know, it's not good enough detail.

(00:34:18):
So that for me has been really reassuring and was a really important part of our

(00:34:26):
kind of academic,

(00:34:27):
you know,

(00:34:27):
development of this and the plans is to,

(00:34:31):
you know,

(00:34:31):
really understand and make sure that people understood what they were consenting to

(00:34:36):
and that we had kind of almost like a mandate and an agreement from the public that,

(00:34:41):
yes,

(00:34:41):
this was a valid use of data.

(00:34:46):
The accuracy point is really funny because I think you're getting a lot of the

(00:34:53):
information from parents,

(00:34:55):
right?

(00:34:55):
And I guess even when the kids go to GPs,

(00:35:00):
generally speaking,

(00:35:01):
the parents speak for them in lots of cases.

(00:35:05):
So is that sometimes a concern in terms of accuracy of data?

(00:35:12):
depends on what your question is so if you're looking at the majority of research

(00:35:20):
focuses on factual information like do you have a disorder not or not what were the

(00:35:26):
tests what the results of those tests what were the drugs what were the doses did

(00:35:31):
it you know how long we were on it for what was the response to your clinical

(00:35:34):
response to it

(00:35:35):
And to be honest, that's not very ambiguous.

(00:35:39):
It's just factual information.

(00:35:40):
The point where that becomes more relevant actually is when you're looking,

(00:35:45):
is if you're doing,

(00:35:46):
so we don't do this in the bioresource do we care,

(00:35:49):
but it's when you're doing research with free text data.

(00:35:52):
So the free text data in the notes is, so notes have got two different types of health notes.

(00:35:57):
So one is this structured kind of stuff like factual, is it there or isn't there kind of,

(00:36:02):
drug type stuff or diagnosis type stuff,

(00:36:04):
the other is just what the clinician writes about you,

(00:36:06):
about the situation where they're seeing you.

(00:36:09):
There's more room for ambiguity there, I would say.

(00:36:13):
And one of the things that was PPR from a patient public perspective that came up

(00:36:19):
for us when we were doing this work was to,

(00:36:22):
was actually also thinking about from an inequalities perspective.

(00:36:25):
So it's the interpretation of the information that's in there and how do you

(00:36:30):
interpret it based on the context of the person and on their context that they live in.

(00:36:35):
And that's where it becomes, you have to be a lot more careful.

(00:36:38):
So there's a real increase in interest in the use of that data using large language models.

(00:36:44):
So it's a bit like co-pilot chat GPTP and also what we call,

(00:36:48):
which is the basis of which is in something called natural language process.

(00:36:51):
So it's when AI algorithms scan text

(00:36:55):
to look for meaning for and extract meaning out of it.

(00:36:59):
And people who do that research,

(00:37:01):
of which is a whole academic field of its own,

(00:37:05):
spend a lot of time being really thoughtful about how they can think about the

(00:37:09):
context of the information and how they can extract it with that in mind.

(00:37:14):
And we do a little bit of work to think about that as well.

(00:37:17):
So I think you're right, you do have to be careful.

(00:37:20):
But happily, there's recognition of that

(00:37:25):
that need, yeah.

(00:37:27):
And the other thing actually just to say also is,

(00:37:29):
which just made me think when we were talking earlier is that with the data and the

(00:37:36):
kind of public approved acceptance of the paper data,

(00:37:39):
obviously the only data we ever have access to in Decipher is that of people who

(00:37:44):
have consented and who are happy with that.

(00:37:47):
And then the other thing that's very clear from a Decipher perspective is that at

(00:37:51):
any point someone changes their mind,

(00:37:53):
whether that's the parent or the young person,

(00:37:55):
they can let us know and we can remove all of the data.

(00:37:59):
So we can't take data out that we've used in research programs.

(00:38:04):
So if their data has been used in a research project,

(00:38:06):
they've consented for it to be used and we can't retrospectively extract that information.

(00:38:10):
But prospectively,

(00:38:11):
we can easily and we're very keen to remove their information so it's not used in

(00:38:19):
any prospective research.

(00:38:21):
So it's never a definitive,

(00:38:25):
you've said yes for all time decision.

(00:38:27):
It's a, yes, I'm happy for you to use it.

(00:38:29):
I'll let you know if that ever changes.

(00:38:30):
And then we act on that.

(00:38:33):
I think that's very good to know that you can technically like pull out at any time.

(00:38:36):
It's not a, it's a very reassuring thing for.

(00:38:39):
Yeah.

(00:38:41):
And also the other thing that's 16, I think 16 or 17.

(00:38:46):
We don't automatically assume when you,

(00:38:48):
because obviously the parent consents for the child and the young person assents,

(00:38:52):
which means they,

(00:38:54):
you know, approve of it, but they don't give legal consent.

(00:38:58):
And we don't assume that they continue to consent at 16,

(00:39:01):
so every single person who's been consented for and part of their parents is

(00:39:06):
personally asked when they turn 16,

(00:39:08):
do you still consent to be part of the byresolals going forward?

(00:39:11):
So that's another critical element of this.

(00:39:16):
So let's talk a bit about the success of the program so far,

(00:39:20):
because the program started a year ago officially or two years ago now?

(00:39:26):
Well,

(00:39:26):
it launched for,

(00:39:27):
it's been about five years,

(00:39:29):
six years,

(00:39:30):
but we launched for recruiting into families into Decipher.

(00:39:34):
I think it was the end of July, 2023.

(00:39:38):
OK,

(00:39:38):
because that's the date which I was thinking of because I'm trying to go through

(00:39:40):
the email back and forth.

(00:39:41):
We had to try to get the right.

(00:39:44):
So from July 2023 onwards.

(00:39:46):
So what are sort of the numbers?

(00:39:49):
How many people have been involved?

(00:39:52):
What is sort of your targets as well going forward?

(00:39:55):
Yeah,

(00:39:55):
so we have over 7000 children now consented to decipher,

(00:40:03):
which is really,

(00:40:04):
really excellent.

(00:40:06):
seen an amazing kind of uptake and we've had so much positive feedback from

(00:40:11):
families and young people just about taking part.

(00:40:16):
We do a lot of promotion through social media and we've had some just amazing kind

(00:40:24):
of engagement and comments on there with people taking part so that's been excellent.

(00:40:30):
The goal is just really to get the resource

(00:40:35):
big enough to be useful for researchers to use.

(00:40:39):
So if you think about we've got those 7000 children already,

(00:40:44):
but as Anna said,

(00:40:46):
about half have reported some kind of physical health conditions,

(00:40:49):
about half haven't.

(00:40:51):
The different age ranges in terms of those reporting mental health conditions kind

(00:40:56):
of increases in the higher age groups.

(00:40:59):
So if you think about that,

(00:41:01):
if you think about a researcher that would want to study a specific condition,

(00:41:05):
They've then only got a certain pool of that 7000.

(00:41:09):
So the bigger,

(00:41:11):
the better is essentially the goal in terms of the more people who are involved,

(00:41:16):
the more people with different types of condition who are involved,

(00:41:19):
the more people from different areas around the country or from different backgrounds,

(00:41:24):
different ethnicities,

(00:41:25):
making sure our age range,

(00:41:27):
we have a good pool of different people from younger age groups as well as older

(00:41:31):
age groups.

(00:41:32):
That's all super important in making the resource kind of usable to researchers and

(00:41:39):
making sure that the findings of any research studies that kind of involved by

(00:41:44):
resource would actually be relevant to everyone.

(00:41:49):
So that's the aim now.

(00:41:51):
We're just trying to reach as many children and families as possible to kind of

(00:41:55):
spread the word about deciphering.

(00:41:58):
give them the opportunity to take part because it's all about everyone having equal

(00:42:02):
opportunities to participate.

(00:42:07):
Yeah 7000 sounds like a very big number until you realize it's probably the size of

(00:42:11):
two schools and then in the grander context of the United Kingdom and 60 million

(00:42:18):
people and what 30 odd million kids it's not

(00:42:23):
It's not a lot of information, isn't it?

(00:42:25):
And then,

(00:42:25):
like you said,

(00:42:27):
suppose you're saying asthma out of the 7,000 kids,

(00:42:29):
how many have asthma of X age of this?

(00:42:33):
And then the pool dwindles and dwindles and dwindles.

(00:42:38):
All right,

(00:42:39):
we've kind of been,

(00:42:40):
we've covered a lot of the sort of the ethics,

(00:42:42):
the sort of structure of the entire program and the data security side,

(00:42:48):
but let's talk about more of the exciting stuff.

(00:42:50):
So what sort of opportunities does this present?

(00:42:54):
I know you touched on it a very little bit at the start,

(00:42:56):
but let's focus on that now and the importance of having children and young people

(00:43:01):
part of research.

(00:43:02):
So yeah, Anna, Lizzie, if you guys could go ahead.

(00:43:05):
Brilliant, thank you.

(00:43:07):
But I mean, do you know what?

(00:43:08):
I think this is probably is such an exciting program of work because I think we've

(00:43:13):
got some of the we've got the opportunity here to tackle some of the greatest

(00:43:18):
challenges that are really facing us all in society.

(00:43:21):
And by enabling children to get involved in this kind of really pioneering,

(00:43:28):
cutting edge research.

(00:43:29):
So we've kind of touched on this idea that

(00:43:33):
we have all of these diseases that we all kind of experience through life.

(00:43:38):
So diabetes, cardiovascular disease, even, you know, some of the dementias.

(00:43:45):
And although they're affecting us during our whole life course,

(00:43:47):
we know that the origins of pretty much all of those diseases,

(00:43:50):
even the things like the dementias have our origins in the first 20 years of life.

(00:43:56):
But if we look at where all the research is done and where the,

(00:44:00):
lot of the focus is it's all on adults and so what we really need to do is turn

(00:44:05):
that on its head and we need to say actually how can we really think about

(00:44:09):
understanding the origins of disease how can we understand how our genes interact

(00:44:14):
with the environment we live in how that how the experiences we have growing up and

(00:44:19):
the environments we grow up in affect our genes and really understanding that is

(00:44:24):
going to be critical to unlocking

(00:44:27):
a lot of the mysteries that face us around what causes diseases and how we best treat them.

(00:44:33):
But I think the thing that,

(00:44:34):
you know,

(00:44:35):
we always laugh about in the team is that,

(00:44:37):
you know,

(00:44:38):
as a society,

(00:44:39):
we know more about the genetics of things like flies than we do about how our genes

(00:44:46):
impact on our health as we grow up.

(00:44:48):
And so we're really missing these really critical opportunities to impact

(00:44:52):
positively on children's health.

(00:44:54):
And then also really think about how

(00:44:56):
those diseases kind of progress and emerge through life.

(00:45:00):
So although this is a paediatric research programme,

(00:45:03):
the impact it's gonna have is across the whole life course.

(00:45:06):
And that's kind of really fascinating, exciting stuff.

(00:45:10):
So the call,

(00:45:11):
I guess,

(00:45:11):
to young people is not just to kind of get involved in research and their families,

(00:45:17):
but it's actually,

(00:45:18):
you know,

(00:45:18):
get involved in a programme which is gonna help us significantly understand how disease,

(00:45:24):
you know,

(00:45:27):
the impact of disease on the whole of our life course.

(00:45:29):
So it's wonderful.

(00:45:31):
Yeah,

(00:45:33):
it's kind of this thing,

(00:45:34):
you could probably pitch it a little bit as,

(00:45:36):
oh,

(00:45:38):
you see some of the diseases people have with their older,

(00:45:41):
if you help now,

(00:45:42):
you can help eradicate this by the time you get old.

(00:45:46):
Yeah, exactly.

(00:45:47):
And also it has really tangible, you know, diabetes is a really good example.

(00:45:51):
So you can look at it from type one or type two perspective, but from a type one perspective,

(00:45:56):
you know, that is a disorder that predominantly affects children.

(00:45:59):
And so getting involved in that research affects children now in the,

(00:46:02):
you know,

(00:46:03):
we've already had exciting genetic discoveries that have shown us,

(00:46:07):
you know,

(00:46:07):
lots of,

(00:46:07):
you know,

(00:46:07):
people have to have finger pricks lots of times they need to get into it every day.

(00:46:11):
And if you have type one diabetes, it's really unpleasant and it's horrible experience.

(00:46:16):
But genetics researchers discovered that actually there's a proportion of genes,

(00:46:21):
children who have the genetic profile,

(00:46:23):
which means

(00:46:24):
they don't have to have an injection tool and actually they can have a tablet.

(00:46:27):
And that's been transformative for them because they've now don't have to do all of

(00:46:31):
that injecting and all of that testing and they can have the tablet.

(00:46:34):
And unless we've done the genetics research and then create a test that enables us

(00:46:37):
to identify those children with that genetics test,

(00:46:41):
that wouldn't have been possible for those children.

(00:46:43):
So, I mean, personally, my brother's got type one diabetes.

(00:46:46):
So I've seen how it affects children and young people psychologically, but also practically.

(00:46:51):
And,

(00:46:51):
you know,

(00:46:51):
if he'd had the opportunity for something like that,

(00:46:53):
it would really transform his life.

(00:46:55):
But then also we talked, we touched on type two ATs as well previously.

(00:46:59):
And so that,

(00:47:00):
you know,

(00:47:00):
actually understanding if we've got predisposition for that and we're able to

(00:47:04):
predict it using potentially AI or other things,

(00:47:07):
then,

(00:47:08):
or the genetic code plus the environmental information,

(00:47:11):
we've got the opportunity to make really positive decisions about our health today,

(00:47:16):
which means that in my lifetime,

(00:47:18):
I'm less likely to have type

(00:47:21):
to suffer from the poor consequences of having type D diabetes.

(00:47:25):
So it's fantastic.

(00:47:27):
But in order to solve problems like this, we need kids to get involved.

(00:47:31):
And so we need children to get involved with people like Decipher.

(00:47:34):
So I guess this is kind of as much as anything is a real call to say, come spit in a tube.

(00:47:41):
Let's do this research and get involved in research and we can actually make some

(00:47:45):
of these changes together.

(00:47:47):
Spitting in a tube can go a long way.

(00:47:49):
It really can.

(00:47:51):
Who knew?

(00:47:55):
So yeah,

(00:47:57):
and how do people get in touch in terms of if someone listens and is convinced to

(00:48:02):
get their kids involved in it?

(00:48:04):
How would that sort of entire process work?

(00:48:08):
Or if you went to a school where you know nobody's part of it,

(00:48:12):
what's the sort of pitch to get people involved?

(00:48:14):
Yeah, absolutely.

(00:48:16):
So maybe I'll just go through the whole kind of signing up process just so it's super clear.

(00:48:22):
So as I said, we're kind of promoting Decipher through various avenues.

(00:48:27):
We have been going into schools.

(00:48:28):
We're doing a lot of work through social media and other kind of media similar to

(00:48:33):
this podcast,

(00:48:34):
for example.

(00:48:35):
And we do approach patients in kind of NHS hospitals as well.

(00:48:42):
But anyone who hears about Decipher,

(00:48:44):
if you're hearing about it now and you want to get involved,

(00:48:46):
the best thing to do is go to the NIHR Bioresource website.

(00:48:52):
So you can just Google NHIHR by resource and it should come up easily and then

(00:48:57):
Decipher is one of the pages on there.

(00:49:00):
It has all the information about what we do,

(00:49:03):
all the information sheets,

(00:49:04):
videos,

(00:49:05):
kind of FAQs and things.

(00:49:07):
And also our email address can always contact us with any questions if you're kind

(00:49:12):
of deciding whether or not you want to take part or if anything's unclear.

(00:49:16):
And then there's just a big join now button on the website and that's how you get involved.

(00:49:21):
So it can all be done at home.

(00:49:24):
The forms can be completed online.

(00:49:27):
So just kind of initially express interest by just saying,

(00:49:31):
yes,

(00:49:32):
I want to receive more information.

(00:49:34):
That's the first step.

(00:49:35):
And then we'll send you a link with all the online forms.

(00:49:40):
So as we've been talking about, we've said the word consent a few times.

(00:49:45):
So that's just the parent of the young person.

(00:49:48):
So anyone under the age of 16 taking part in research in the UK,

(00:49:52):
the parent needs to give the consent.

(00:49:55):
And they're the ones who sign agreeing to the various things,

(00:50:00):
agreeing to be contacted,

(00:50:02):
agreeing to kind of.

(00:50:04):
give the sample, that kind of thing.

(00:50:07):
Then as Anna mentioned,

(00:50:09):
depending on the age range,

(00:50:11):
depending how appropriate it is,

(00:50:13):
there's what we call an ascent form,

(00:50:16):
which we offer the young person to also sign just because we really want them to be

(00:50:21):
involved in the process of agreeing.

(00:50:25):
It should be a whole family decision as to whether they take part or not.

(00:50:28):
The young person needs to agree as well.

(00:50:30):
That's really important to us.

(00:50:32):
And then there's just a basic kind of contact details thing.

(00:50:37):
And then that's everything that's you signed up from home.

(00:50:41):
And then we'll send out the spit kit to you at home.

(00:50:47):
And that's how we collect samples.

(00:50:49):
So you don't need to leave your home for that.

(00:50:51):
It has a free post box.

(00:50:52):
So you spit in the tube.

(00:50:55):
put it back in the box and then it comes back to us, goes to our lab.

(00:50:59):
So that's everything.

(00:51:01):
And then there's just a very basic questionnaire with your health and lifestyle,

(00:51:06):
which also will come as an online link.

(00:51:10):
So again, can be done from home that Anna mentioned that asked about basic things.

(00:51:14):
So that's what we were meaning when we say when people have self-reported having

(00:51:19):
health conditions or mental health conditions.

(00:51:21):
It's just a few questions.

(00:51:24):
Do you have asthma?

(00:51:25):
Do you have allergies?

(00:51:26):
That kind of thing.

(00:51:28):
And that's as easy as that.

(00:51:31):
And then that sample and that questionnaire can be used in various health research

(00:51:37):
studies to help lots of other people in the future.

(00:51:41):
Ah, nice.

(00:51:43):
So I guess in this entire process,

(00:51:46):
there's not necessarily anything super strenuous in terms of doing cognitive

(00:51:51):
testing or anything like that.

(00:51:52):
That is only if,

(00:51:54):
suppose,

(00:51:55):
a particular study wants to follow this particular...

(00:51:57):
Because we had spoken about children's mental health,

(00:51:59):
and I guess a little bit of it does involve sort of cognitive markers and...

(00:52:04):
developmental markers and things like that so i assume that if you're part of the

(00:52:08):
study and then if a particular researcher wants to do a particular thing on it

(00:52:13):
you'd sort of get people in contact and that's when sort of like sorry so that's

(00:52:21):
when um yeah you'd sort of any higher level cognitive test so whatever would be

(00:52:26):
done would be part of that study and not necessarily you guys

(00:52:31):
Yeah, absolutely.

(00:52:32):
So if that was the case,

(00:52:33):
for example,

(00:52:34):
a researcher applied to us and wanted to do a study that involved some extra tests,

(00:52:39):
they would have an information sheet that explains everything about their study,

(00:52:44):
which we would

(00:52:46):
send out to our participants, invite them, say you're eligible for this.

(00:52:51):
This is the information.

(00:52:52):
Do you want to take part?

(00:52:54):
And once they've consented for that,

(00:52:57):
then we hand them over to the researchers and then the researchers can kind of

(00:53:02):
liaise with them about whatever the study involves.

(00:53:05):
So if that involves extra tests or extra questionnaires or that kind of thing.

(00:53:09):
But they would only once they agree to take part.

(00:53:14):
All right,

(00:53:16):
for the last sort of five,

(00:53:17):
10 minutes,

(00:53:18):
I wanted to touch a little bit on your research,

(00:53:20):
Anna.

(00:53:20):
So I might actually let you take the floor and sort of talk about it to an extent,

(00:53:29):
because there's so much stuff here in terms of you doing some work with artificial

(00:53:35):
intelligence and mental health,

(00:53:37):
but then...

(00:53:38):
also just the decipher program in general um so i i'll let you decide what you want

(00:53:46):
to talk about and then we can elaborate on the other research which you choose yeah

(00:53:51):
thank you well i mean the the main aim of our the research program so um the

(00:53:56):
research program i lead from a mental health perspective is something called timely

(00:54:00):
and the aspiration behind timely is to um

(00:54:05):
enable children and young people to have vastly improved mental health outcomes.

(00:54:11):
And we want to do that by enabling them to get access to mental health support and

(00:54:16):
a care that's appropriate for them much earlier in the course.

(00:54:21):
So we know that in child psychiatry at the moment, the prevalence is increasing.

(00:54:26):
So the mental health needs are now around 20% in children and young people, so one in five.

(00:54:34):
And that's gone up from about 10% about 15 years ago.

(00:54:37):
So it's a huge expansion in mental health need.

(00:54:41):
But if we look at the resources and the capacity of child mental health systems,

(00:54:45):
they don't match that need.

(00:54:47):
So as a result of that,

(00:54:49):
we know that about 70% of children with mental health problem don't get access to

(00:54:56):
care within a year.

(00:54:57):
So if we think about a year in your teenage years, that might be 20%, yeah.

(00:55:04):
20% of your teenage years is needing help and not getting access to it.

(00:55:08):
It's a huge proportion.

(00:55:09):
And,

(00:55:10):
you know,

(00:55:10):
and actually there's lots of examples of children who don't get help at all or can

(00:55:14):
be on waiting lists for years.

(00:55:15):
So we're really trying to change that.

(00:55:20):
And one of the ways that you can do that is through the use of data and the

(00:55:25):
information that we collect our answers about children from the minute they're born

(00:55:30):
really to through their childhood.

(00:55:33):
which enables us to understand what their mental health needs are,

(00:55:39):
to identify them systematically and get them into right care more efficiently.

(00:55:43):
So the idea being if we spot it early,

(00:55:46):
we treat it when it's less of a problem and it's easier to treat in the community,

(00:55:50):
then a lot of problems won't become really significant issues.

(00:55:55):
And clinically, I'm really passionate about it.

(00:55:58):
I spend a lot of time in clinic with young people who aren't going to school,

(00:56:02):
aren't able to leave home,

(00:56:04):
crippling anxiety,

(00:56:05):
crippling depression,

(00:56:06):
crippling OCD,

(00:56:08):
who have been sat on waiting lists for an awful long time trying to get access to

(00:56:11):
care and help and who just can't access it because they just haven't got the

(00:56:15):
capacity in the system to do it.

(00:56:16):
So we're really thinking about how can we use data

(00:56:20):
and AI to think about streamlining that process,

(00:56:24):
identifying needs early,

(00:56:26):
systematically,

(00:56:26):
and getting kids into help much sooner.

(00:56:31):
I guess this is an opinion, but what are sort of the reasons for

(00:56:35):
all this happening,

(00:56:36):
why has there been an sort of increase,

(00:56:38):
as you pointed out,

(00:56:40):
in mental health conditions?

(00:56:42):
Well,

(00:56:42):
I mean,

(00:56:42):
the research is not conclusive,

(00:56:44):
so we don't yes and let no,

(00:56:46):
but there's probably lots of different factors.

(00:56:47):
So you can look at it from different perspectives,

(00:56:50):
and actually it's a really exciting point in neurology and psychiatry,

(00:56:53):
where we're trying to really understanding the origins of disease.

(00:56:57):
So some of it's social.

(00:56:59):
So, for example, we

(00:57:02):
know that there's lots of factors that impact on children.

(00:57:06):
So for example,

(00:57:07):
the stress of school,

(00:57:09):
the families and complex family arrangements can make things more difficult.

(00:57:16):
We know that the impact,

(00:57:19):
stressful school environments and the real pressure we have to do well and also the

(00:57:23):
kind of lack of flexibility of the school environment to meet kids needs can be a

(00:57:27):
really significant problem.

(00:57:29):
We also

(00:57:31):
observe the effects of digital and social media.

(00:57:35):
And again, the jury's out as to whether they're protective or make things more difficult.

(00:57:39):
And I think we don't know.

(00:57:41):
For some children, they do cause problems.

(00:57:44):
And for some children, it's actually helpful to them.

(00:57:47):
We don't know who's who yet,

(00:57:48):
but there's definitely the expansion of social media and digital has definitely is

(00:57:55):
associated with it.

(00:57:56):
We don't know if it's causal, but it's associated with it.

(00:58:00):
But then actually we're also understanding that,

(00:58:03):
you know,

(00:58:03):
one of the great things that's happened is we've really reduced the stigma around

(00:58:06):
mental health.

(00:58:08):
And so a lot more people are being identified who perhaps wouldn't have been

(00:58:11):
identified before,

(00:58:13):
which is fantastic because it means they're coming forward and we're able to give

(00:58:15):
them help if we had a system that had capacity to deal with the amount of people

(00:58:19):
that are coming forward now,

(00:58:20):
which is one of the issues.

(00:58:22):
But so actually a lot of is around identification of need, which, you know, and

(00:58:28):
That's really important.

(00:58:29):
So, again, I was talking a bit about some of the work we did with the public around deciphering.

(00:58:36):
We've similarly done a lot of work with the public around this kind of use of AI

(00:58:40):
and mental health and early identification.

(00:58:43):
And,

(00:58:44):
you know,

(00:58:44):
I've heard some really moving stories from adults who have said,

(00:58:48):
you know,

(00:58:48):
they've really struggled with really severe mental health problems that affect them

(00:58:52):
for all of life.

(00:58:53):
And actually,

(00:58:53):
had they had access to help early,

(00:58:55):
then they feel their life would have been significantly different.

(00:58:58):
And they would have been locked in many domains,

(00:59:01):
whether that's work,

(00:59:02):
social,

(00:59:03):
emotional relationships,

(00:59:04):
family,

(00:59:05):
children.

(00:59:06):
So identifying early and getting help early can have a huge impact across the

(00:59:11):
lifespan as well,

(00:59:13):
which is why we're focusing on it.

(00:59:21):
Those conversations are really quite nice.

(00:59:26):
when I hear such conversations that people being like,

(00:59:28):
if I had this resource back when I was young,

(00:59:31):
it shows that we're sort of moving in the right direction in many ways.

(00:59:37):
Yeah, you said the wait times, you pointed out to wait times being a factor, right?

(00:59:43):
Especially in sort of teenage years,

(00:59:47):
you losing a year on the wait list or even in childhood,

(00:59:49):
you losing a year on a wait list is a year of development.

(00:59:52):
Exactly.

(00:59:54):
With that,

(00:59:56):
so I was just wondering how you expected AI or sort of how in your view would

(01:00:06):
system restructuring help this?

(01:00:08):
Yeah,

(01:00:08):
well,

(01:00:08):
I mean,

(01:00:09):
one of the things with kids' mental health is that it's really difficult to figure

(01:00:13):
out for anybody,

(01:00:15):
whether you're mum,

(01:00:16):
teacher,

(01:00:17):
paediatrician,

(01:00:17):
you know,

(01:00:18):
is is this about a blip because of something bad that's happened like my kids being

(01:00:23):
bullied maybe family breakdown divorce maybe illness in the family so something bad

(01:00:28):
has happened is is this a phase and is my child going into the start of a mental

(01:00:35):
health problem that needs to be intervened or is this just a phase and they're

(01:00:38):
going to come out of it okay and

(01:00:41):
distinguish between what's a normal reaction to life events and what's an emerging

(01:00:45):
mental health problem is really difficult.

(01:00:47):
So it's something that's why we need child psychiatrists or child mental health

(01:00:50):
services to be able to help distinguish between the two.

(01:00:55):
And that experience sits in a very specialist service,

(01:00:58):
which is what we call CAMHS in this country.

(01:01:00):
And so therefore,

(01:01:06):
The diagnosis of mental health problem is kind of in the hands of a specialist service,

(01:01:11):
which,

(01:01:11):
as we said,

(01:01:12):
is under-resourced.

(01:01:13):
So.

(01:01:16):
And the impact of that is that people who see kids and see kids with problems

(01:01:23):
either say are more prone to say,

(01:01:25):
no,

(01:01:25):
it's just a blip.

(01:01:26):
Don't worry about it.

(01:01:27):
Get on with life.

(01:01:28):
or they might be very keen to refer into CAMS.

(01:01:31):
So we see both things.

(01:01:32):
And that causes what this thing we call unwarranted variation.

(01:01:35):
So some kids get missed because they've got a system around them that isn't

(01:01:39):
sensitive to identifying needs.

(01:01:41):
And then other kids,

(01:01:43):
which has got maybe a system around them or people around them that are very

(01:01:47):
hypersensitive to needs,

(01:01:49):
do refer in when there perhaps isn't the need.

(01:01:51):
So we get lots of kids who come into CAMS

(01:01:55):
many who don't need help,

(01:01:56):
lots who do need help,

(01:01:57):
but then also a lot in the community who get missed as well.

(01:02:01):
And the tragedy of it is the kids who get missed,

(01:02:03):
some of those are some of the most vulnerable and most in need because there's just

(01:02:07):
some characteristics about them or the systems they're in that means they might be

(01:02:10):
less likely to pick up the signals that this is a mental health problem rather than

(01:02:14):
just a blip in life.

(01:02:16):
So what we're looking to try and do with the AI is to say rather than

(01:02:21):
everyone get referred into CAMHS for assessment.

(01:02:23):
And actually,

(01:02:24):
you know,

(01:02:24):
one way of doing it can be to raise,

(01:02:26):
which is what we've been doing in the last 10 years,

(01:02:28):
raise the awareness of mental health.

(01:02:30):
So everyone,

(01:02:30):
so the kind of the threshold for recognition comes down from,

(01:02:36):
although often not the most vulnerable.

(01:02:39):
So we get this huge influx of referrals into CAMHS,

(01:02:41):
but it's a very,

(01:02:42):
it's not an intelligent influx.

(01:02:44):
It's just anything that we think might be a problem goes into CAMHS.

(01:02:47):
So what we're thinking with AI is that if we can put tools into the hands of

(01:02:52):
professionals who have contact and who know children well,

(01:02:56):
but aren't mental health professionals and can give them reliable support with the

(01:03:05):
decision to say,

(01:03:06):
actually,

(01:03:06):
is this a young person who needs to refer to CAMHS or is this a young person who we

(01:03:10):
could wait,

(01:03:11):
we can watch and wait.

(01:03:12):
And then the second important question is actually,

(01:03:14):
which is where it's,

(01:03:15):
well,

(01:03:15):
there's two important questions,

(01:03:16):
but the next question is,

(01:03:18):
is this the right time?

(01:03:19):
Because interesting,

(01:03:20):
there's emerging evidence says actually just because there's a problem,

(01:03:24):
it doesn't mean it's the right time for that individual.

(01:03:27):
And there's evidence says if you have wrong intervention at the wrong time,

(01:03:30):
you can get different outcomes.

(01:03:32):
And then the third question is, so what?

(01:03:34):
So we've identified a problem.

(01:03:37):
Great.

(01:03:38):
but what are you just going to send everyone to CAMHS and make the waiting list

(01:03:41):
even worse,

(01:03:41):
you know,

(01:03:42):
so what?

(01:03:43):
And that's the,

(01:03:43):
that's the other critical question for the AI is distinguish between the people who

(01:03:48):
benefit from a CAMHS referral and need specialist mental health treatment of which

(01:03:52):
we think of the 20% that's got a mental health need in the population,

(01:03:56):
probably only about 10% of those.

(01:03:57):
So 10% of the 20%, actually, so 2% of the general population,

(01:04:04):
need to go into CAMHS and the rest can be really effectively managed in the

(01:04:08):
community by taking an approach which is really focused on goals.

(01:04:13):
So what was the problem that you're faced with?

(01:04:16):
I can't go to school.

(01:04:17):
I've got social anxiety.

(01:04:20):
You know, I'm finding it really difficult with food at the moment.

(01:04:25):
So then needs based approaches rather than diagnosis based approaches.

(01:04:29):
And we can take a needs-based approach within the community to deal with the

(01:04:33):
majority of mental health problems.

(01:04:35):
So the AI looks to identify kids systematically and making sure we don't miss the

(01:04:39):
kids who their family or the system might not spot.

(01:04:44):
And then distinguish who needs to go to CAMHS.

(01:04:46):
And for those who do,

(01:04:47):
let CAMHS do their job because they're specialist CAMHS and they need to look after

(01:04:50):
the kids that have severe need.

(01:04:52):
For the kids who don't need to go to CAMHS,

(01:04:54):
how can we activate and signpost within that system so that they can get access to

(01:04:59):
appropriate care and support according to their needs,

(01:05:03):
rather than according to requiring a diagnosis in a specialist centre.

(01:05:07):
So that's what the AI is looking to do.

(01:05:10):
And in that we're looking to say,

(01:05:12):
actually,

(01:05:12):
how can we build a system for child mental health that's based on those?

(01:05:15):
And the great news is,

(01:05:16):
is we've been working with the Anna Freud Centre in Tavistock for the last,

(01:05:20):
well,

(01:05:20):
actually probably 10 years have been working with them as they've built...

(01:05:25):
a model called Thrive, which Amanda Walpert and Peter Fonergy were kind of developed.

(01:05:30):
And that Thrive model for children's mental health very much focuses on that

(01:05:35):
needs-based approach.

(01:05:37):
And we've been doing work with clinical systems to help them implement that approach.

(01:05:41):
And we're just about to publish a big study that demonstrates it's effective and

(01:05:47):
it's a really effective way of reducing waiting times.

(01:05:50):
And so now what we're looking to do is to build the digital and the AI tools

(01:05:54):
that can enable that hypothesis for how we should work to become a reality in a

(01:06:01):
computer-based system.

(01:06:03):
So that's why we're doing it from a mental health perspective.

(01:06:08):
That's awesome.

(01:06:09):
I would love to talk more about it and maybe we should have you back on to just talk about

(01:06:15):
this as an as an entire thing but because we were here to talk about decipher maybe

(01:06:20):
i should ask you how does this link how can this sort of link into the decipher

(01:06:24):
program so our understanding of the origins of mental health problems are have been

(01:06:33):
until not till now i remember when i did my membership we talked about genetics and

(01:06:37):
mental health but the general thinking was wasn't gonna be very helpful because it

(01:06:40):
was what we call a heterogeneous disorder so there's different types of disorder

(01:06:44):
So somewhere you have a mutation or a particular very specific genetic

(01:06:49):
characteristic and having that thing means you get a disorder.

(01:06:52):
So diabetes,

(01:06:54):
cancers,

(01:06:55):
Huntington's disease,

(01:06:56):
there's lots and lots of examples of disorders where you have a mutation,

(01:06:59):
you have that disease.

(01:07:01):
Mental health, there's a very, very, very small number of disorders.

(01:07:05):
There's some subtypes of schizophrenia where that's the case.

(01:07:11):
99% of mental health problems are not in that category.

(01:07:13):
So they're what we call heterogeneous.

(01:07:15):
And that means that lots and lots of different blips in your genetic code,

(01:07:21):
any of which on their own makes no difference.

(01:07:25):
So lots of people we have,

(01:07:26):
you know,

(01:07:26):
if you look at our genetic code,

(01:07:27):
we've all got what we call these little kind of micro variations.

(01:07:30):
So you can have different kind of patterns within a code and they're all kind of normal-ish.

(01:07:39):
But if you have lots of those that come together,

(01:07:43):
people can have a greater risk of having a mental health problem.

(01:07:46):
And it's been really hard because we've not had big enough sample sizes,

(01:07:50):
we've not had whole genome sequences,

(01:07:53):
and we've not had access to computers that can store and analyse big enough data

(01:07:58):
until now.

(01:07:59):
So in the last probably three years,

(01:08:01):
four years,

(01:08:01):
we've got to this critical point where we've got enough people who have got whole

(01:08:06):
genome samples,

(01:08:07):
plus

(01:08:08):
a big enough computer and ability to analyze it.

(01:08:12):
And we can quickly and cheaply do these genetic tests.

(01:08:15):
So you can do a whole genome sequence in about a day for 200 quid now, if not less.

(01:08:19):
So we're an exciting point in terms of being able to study what we call heterogeneous diseases.

(01:08:25):
And that means we're at this critical point where we can actually say,

(01:08:29):
how can we bring together that data about our genomics together with the

(01:08:33):
information about our social and environmental,

(01:08:38):
home situation.

(01:08:39):
So my,

(01:08:41):
you know,

(01:08:41):
if I've had bad experiences,

(01:08:43):
so the other element of it is,

(01:08:44):
is we know that if children have what we call adverse childhood experiences,

(01:08:47):
so difficult experiences growing up,

(01:08:50):
they accumulate and make you more predisposed to having risk for mental health problems.

(01:08:55):
And in some people who have got particular genetic patterns in their profile,

(01:09:01):
those things come together and mean that person's more likely to get a mental

(01:09:05):
health problem.

(01:09:05):
So

(01:09:07):
The point of the research programme from a genetic perspective is to say,

(01:09:11):
actually,

(01:09:11):
can we gather together all that information about what happens as you grow up,

(01:09:16):
link it together with those genetic patterns,

(01:09:20):
and then see what combinations,

(01:09:23):
and that's where the AI comes in,

(01:09:25):
what combinations of those mean that people are more likely to get a mental health problem.

(01:09:30):
And so the hope is that at the moment we've got access to

(01:09:34):
this information,

(01:09:35):
just kind of the environment and the social information,

(01:09:38):
you know,

(01:09:38):
we've got,

(01:09:38):
we've done some preliminary,

(01:09:39):
we've built some preliminary AI models that show that we've got,

(01:09:43):
we can fairly accurately measure who's going to get a mental health problem,

(01:09:47):
but it's still at,

(01:09:48):
let's say,

(01:09:49):
the 75% accuracy level,

(01:09:51):
which is not bad,

(01:09:52):
it's not bad.

(01:09:53):
It's approaching clinical,

(01:09:54):
what we call clinical utility,

(01:09:57):
accurate enough that you could use it in a clinical system.

(01:10:00):
But our hypothesis or the thing that we're testing

(01:10:03):
is to say actually if we bring in that genomic data does that just make it that

(01:10:06):
much more accurate so that we can be quite clear about who's at risk and what

(01:10:12):
combination of factors in the early life come together to mean the person just tips

(01:10:18):
into then having a mental health problem and then importantly again we always come

(01:10:23):
back to the so what thing is does that genomic pattern and do those patterns help

(01:10:29):
us to understand what

(01:10:31):
type of problem they're more likely to end up having and also critically what

(01:10:37):
treatment is more like to be helpful for them because at the moment we can't predict,

(01:10:40):
we've got no way of predicting from a mental health perspective who's going to

(01:10:44):
benefit best from what treatment.

(01:10:45):
We kind of give people medication and they try lots of different medications and we

(01:10:49):
give them psychological therapy and they try lots of different therapies and we

(01:10:52):
keep going till we find a combination that works.

(01:10:55):
So we hope that with this precision approach

(01:10:58):
that will have more information we can shed light in the early stages of C to say

(01:11:02):
actually you're someone who's going to be really susceptible to drug A and therapy

(01:11:07):
B in this context and that will be helpful for you at the beginning.

(01:11:12):
So that's the aspiration behind it and why we want to bring it together.

(01:11:17):
Yeah,

(01:11:19):
you mentioned at the end there which ties everything in really well and it's

(01:11:22):
something which I hope for as well because I'm

(01:11:25):
Because me and my brother,

(01:11:26):
and we've learned this from experience,

(01:11:27):
that certain drugs don't work on us or don't work on us very well.

(01:11:30):
And it's treatment time,

(01:11:32):
which was basically wasted trying to figure out what works and what doesn't.

(01:11:37):
And it's also your faith in it.

(01:11:39):
So the other aspects of I think,

(01:11:41):
I mean,

(01:11:42):
I always say it's about mental health,

(01:11:43):
but actually I think it's about health in general,

(01:11:45):
if I'm honest,

(01:11:46):
is our faith in a system and medical treatment to help us and the subsequent hope

(01:11:53):
for

(01:11:54):
better future is so closely tied with your experience of your health journey and we

(01:12:02):
find from a mental health perspective in particular that if young people or adults

(01:12:07):
have lots of experience of things that don't help them there's less chance that

(01:12:13):
they're going to benefit from the thing that is going to help them when they

(01:12:16):
finally get there because we almost have a psychological immunization against

(01:12:21):
having the hope that this is going to work and

(01:12:24):
And also, you know, all the medications have some side effects and things.

(01:12:28):
And if you've got this degradation of belief or this rejection of belief that any

(01:12:33):
of this stuff's ever going to help,

(01:12:34):
when you have side effects,

(01:12:35):
you're much less than to tolerate them,

(01:12:37):
keep going,

(01:12:38):
put up with them.

(01:12:40):
And the same with psychological therapy,

(01:12:42):
because actually interesting,

(01:12:43):
we have a lot of focus on medication,

(01:12:45):
but increasingly there's evidence that indicates that having the right type of

(01:12:49):
therapy at the right point is really critical

(01:12:53):
to a good outcome as well.

(01:12:54):
So we think that there'll be elements of that that we'll be able to unpick as well

(01:12:58):
as this getting to the right medication at the right point so that we've got more

(01:13:02):
hope and more likelihood of benefiting.

(01:13:05):
And that's true actually for diabetes, blood pressure medication, all sorts of things.

(01:13:10):
Obviously,

(01:13:10):
as an expert in psychiatry,

(01:13:11):
I can talk to that with more authority,

(01:13:13):
but we see it across all of medicine.

(01:13:18):
That was awesome.

(01:13:20):
coming to basically the end now,

(01:13:22):
so I'll leave it to you guys in the sense that,

(01:13:25):
were there any other things,

(01:13:27):
final thoughts that you guys needed to share?

(01:13:28):
Yeah, so the mic's yours.

(01:13:32):
Well,

(01:13:32):
I think Lizzie and I would both say that the one thing that we'd ask families and

(01:13:39):
young people to consider is whether or not this is something that they want to do,

(01:13:44):
like,

(01:13:44):
do they want to play a pivotal,

(01:13:46):
critical role in really transforming

(01:13:49):
not only child's health,

(01:13:50):
but the health of the whole population across the life course,

(01:13:54):
because,

(01:13:55):
you know,

(01:13:55):
this is really,

(01:13:56):
really key mechanism through which you can,

(01:13:59):
you know,

(01:13:59):
you could have that impact and actually what is a spin in the tube.

(01:14:03):
So it's not a big ask.

(01:14:05):
So of small things, you know, great things come.

(01:14:08):
So, yeah.

(01:14:10):
So thank you, everyone, for listening.

(01:14:14):
most important thing is to just check out our website um and join decipher it's

(01:14:19):
really exciting and super easy to do from home oh awesome so thank you guys so much

(01:14:27):
uh again like and lizzie said do join we will do sign up to decipher we will have

(01:14:33):
all of the stuff on our show notes on youtube uh all the links will be there as

(01:14:38):
well so it's easy for you guys if you're listening then just

(01:14:41):
click on the to scroll down and click on the show notes below uh for the link to

(01:14:46):
decipher but yeah um final question from me uh this is for you guys so everybody's

(01:14:53):
joined decipher everybody's done that um what about general advice so my final

(01:15:00):
question which i ask all my guests is if you had one piece of advice for our

(01:15:04):
listeners what would it be so yeah

(01:15:07):
Lizzie, you go ahead.

(01:15:09):
One piece of advice.

(01:15:10):
Oh, I don't know.

(01:15:11):
I guess it would just be,

(01:15:12):
yeah,

(01:15:15):
think about having your voice,

(01:15:17):
have your say,

(01:15:18):
whatever's relevant to you.

(01:15:20):
It doesn't matter what it is.

(01:15:21):
For me and Anna, it's health and health research.

(01:15:25):
But think about what you care about in life and get involved in that and have your say.

(01:15:30):
That's really important.

(01:15:33):
I couldn't agree more.

(01:15:35):
And I think for me,

(01:15:36):
I think I'm going to have to,

(01:15:38):
this is going to come from my origins as child psychiatry is I think it's think a

(01:15:44):
lot about what the most important things in life are.

(01:15:48):
So I remember as a as a medic,

(01:15:51):
you have lots of opportunities to be part of people's health journeys and

(01:15:59):
and including the end of that journey.

(01:16:00):
So when people are coming to the end of their life,

(01:16:03):
and I think my observation in that was that there was lots of,

(01:16:09):
there were sometimes some very successful people who had some quite lonely ends,

(01:16:15):
and yet there was some people who had really focused on,

(01:16:18):
you know,

(01:16:20):
family and the people around them and the relationships they had with them.

(01:16:25):
And my observation would be that actually they often had

(01:16:29):
were surrounded by love and had very relatively fewer regrets at times sometimes.

(01:16:38):
And so I think for me,

(01:16:39):
I've always really focused on that and think as much as we're all here thinking about,

(01:16:43):
you know,

(01:16:47):
careers and elements of that,

(01:16:49):
especially in children,

(01:16:50):
I spend a lot of time hearing about that because the school worries actually.

(01:16:53):
I think the most important thing we all need to focus on is the people and the relationships

(01:16:58):
and the love and care for each other and so i think that for me would be as making

(01:17:05):
is focusing on the things the good things and important things in life by people

(01:17:08):
around us that's that's my take home looking forward awesome now thank you so much

(01:17:14):
guys uh thank you everybody for listening um those following on youtube fortify

(01:17:20):
everywhere so

(01:17:23):
Thank you, everyone.

(01:17:23):
Thank you again, Dr. Anna Moore, Lizzie Morty.

(01:17:26):
Thank you so much for joining us.

(01:17:29):
And until next time, take care, everybody.

(01:17:32):
Thank you so much.

(01:17:33):
Thank you.