Welcome to the seventh season of the Dementia Researcher X ISTAART PIA Relay Podcast. Across six episodes, leading early career and senior researchers hand the mic from one ISTAART PIA to the next, giving you an honest, peer-to-peer tour of where dementia research is actually heading, from wearables and biomarkers to policy and trial design, in the run-up to AAIC.

If we cured Alzheimer's tomorrow but did no work on cost, distribution or access, we would have cured it only for the richest people in the world. That line from Lillian Morgado sits at the centre of this episode. Lillian is a research coordinator at Georgia State University and Communications Chair of the ISTAART Health Policy PIA, working mainly in qualitative research and legal epidemiology. With host Dr Vanessa Young, she talks through what qualitative work actually involves, her research on caregivers and people with dementia in the justice system, and the question that opened up next: what happens to someone with no caregiver to advocate for them. They get into why AI and blood-based biomarkers are as much policy problems as scientific ones, how regulation differs across borders, and why policy is the bridge that decides whether science reaches the people it was meant for. Lillian also runs through the Health Policy PIA's busy week at AAIC, from PIA Day to a featured research session on dementia care across countries.

Takeaways

• Policy is the bridge from the lab to the patient; without it, a breakthrough only reaches the few who can already afford care.
• Qualitative interviews and coding surface the right questions before the big quantitative money goes in.
• Caregivers matter enormously when someone with dementia meets the justice system, which raises the question of those who have none.
• AI and blood-based biomarkers carry legal and access questions, and the rules differ between, say, the US and Europe under GDPR.
• You do not join a PIA because you already belong; you belong because you get involved, and you need not be an expert to contribute.

--

The Alzheimer’s Association International Society to Advance Alzheimer’s Research and Treatment (ISTAART) convenes the global Alzheimer’s and dementia science community. Members share knowledge, fuel collaboration and advance research to find more effective ways to detect, treat and prevent Alzheimer’s and other dementias. Professional Interest Areas (PIA) are an assembly of ISTAART members with common subspecialties or interests.

There are currently 30 PIAs covering a wide range of interests and fields, from Neuroimaging to Diversity and Disparities and everything in between.

Find out more at https://istaart.alz.org/

--

A transcript of this show, links and show notes and profile on all our guests are available on our website at https://www.dementiaresearcher.nihr.ac.uk.

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(upbeat music)

- [Voice Over] Hello, and

welcome to season seven

of the Dementia Researcher

"ISTAART Relay Podcast."

In this series,

members of the ISTAART

professional interest areas

interview each other about their PIAs

and the hot topics in their fields.

Each guest then becomes

the next episode's host,

passing the conversation

along from one researcher to the next.

We're releasing one

episode a day in the run

up to the Alzheimer's Association

International Conference

this year in London and online,

showcasing the work of the ISTAART PIAs.

Thank you for listening.

(upbeat music)

- Hello, everyone, and

thank you for joining us.

My name is Vanessa Young

and I am a postdoc at

the Glenn Biggs Institute

at the University of Texas

at San Antonio Health Science Centre

in San Antonio, Texas, USA.

I am also the communications chair

of the Technology and Dementia PIA.

Today, I'm delighted to be talking

with Lillian Morgado from

the health policy PIA.

Hi, Lillian. Welcome.

Can I start by asking you

to introduce yourself?

- Sure. I'm Lillian Morgado.

I'm a research coordinator

at Georgia State University

in Atlanta, Georgia, USA,

and I am the communications

chair on the health policy PIA.

- Very nice meeting you, Lillian.

And I think this is the beauty

of being part of the PIA,

since this is the first

time that I'm meeting you

and so it's nice

to actually meet people

from all over the places.

So before we actually start talking

about your work within the PIA,

can you talk to us

about your own research?

So what do you do?

- Sure, so I'm a research coordinator,

which means I kind of get

my hands in everything.

I'm very fortunate that I work

under a primary investigator, or PI,

who allows me to be pretty

involved with paper writing

and idea generation of that sort of stuff.

So what we do mostly in our lab

is we do qualitative research.

That includes things like

interviews with people

and then qualitatively coding that.

We've also done some work

on legal epidemiology,

and the subjects we look at

are mostly having to do

with things like ageing,

bioethics, and sort of

the intersection of that

with dementia and the best

practises to move forward

and make sure that

science works for people

the way that scientists want it to.

- So can you tell me more

about that qualitative aspect of research?

So I work more with the

quantitative aspect.

I did very little with

the qualitative component,

and it's very fascinating.

I know there is some

coding that you need to do.

Can you tell us more

or how you are able to embed

that qualitative aspect

within the dementia research?

- Sure.

So a lot of it has to do with

sort of guiding questions

and providing a basis

that we're looking for for

the quantitative research.

So we are getting the

qualitative data to make sure

that when we put all the money in

to do large quantitative projects,

then we are asking the right questions

in the right directions

with the right tools.

One of the things we

like to do is interviews

where we are interviewing

groups of people.

These can be stakeholders,

like researchers or people

who are participating

in venture research.

I recently had a paper that

is just about to be published

where I was interviewing

lawyers and caregivers

to people with dementia

on their experiences with the legal system

and people living with dementia.

So you take these questions

and you take the answers

that people give to you

and you try to look through

them for common themes,

and from that you're able to figure out

sort of the overarching discussion

and what is coming out

in a way that you can't

and with a richness that

you can't always find

with quantitative data.

So it's really rewarding when

you're able to find an answer

to a question you were asking

or an answer to a question

you didn't even know

you needed to be asking.

- Absolutely.

I think that is very fascinating

and it really speaks on that ability

to then really tailor

the future research on that co-design.

You're really working with

the people for the people

and not just with what we have in mind,

so that we can better help

the community that we serve.

In during these qualitative designs,

studies that you had,

has been any specific themes

that you would like to share with us

that maybe come out a little bit more,

for example, here in South Texas

we have been focusing a

little bit in the past years

on that socioeconomic

status that might be related

to also increase health disease burden

is something that you have noticed

in your community, for example.

- So we're not focused

as much on the local

community in our research.

Depending on our project,

sometimes it's national scale,

and we've actually got

an international project

going on right now where we're speaking

with international communities,

and one of the things

that was really interesting

to me in my research

with the attorneys and the caregivers

was seeing just exactly how important

of a role caregivers played

when a person with dementia

is in a position where

they might be arrested

or could have to interact

with the justice system

and how important that caregiver is

to making sure that

there is an okay outcome,

and even just making sure

that people are aware

this person has dementia.

So that's led me to a new line of research

where I'm thinking about,

what do we do if someone

doesn't have that caregiver?

How do we make sure

that they don't get caught

up in the justice system?

That sort of thing.

- Absolutely.

And that is indeed an important work

because not everybody has a caregiver

who is available or can

be available 24 hours 7.

Thinking more broadly

of your research within your sphere,

what are the really hot topics

or exciting area in your

field at the moment?

- I would say the two

biggest ones we're looking at

are probably gonna be AI

or artificial intelligence.

So everybody wants to talk all about that.

And then also blood-based biomarkers

are a really exciting topic

because while the science,

the bench science is

really cool on that side,

but then you have to talk about,

how do we get this information to people?

What tests are used for what?

How do we communicate what

these mean to patients

and research participants

in ways that make sure

that it's given to them in

the most useful way possible?

That sort of stuff.

I think AI and the blood-based biomarkers

are probably the two hottest things

that I'm aware of right now.

(mellow music)

- That sounds great, Lillian,

and it really relates to me, speaks to me

because within my half-first here,

I work within the sphere

of sleep and wearable,

and I want to really concentrate

on improving diagnostic

tools, including AI.

And for my dissertation,

my effort was more within fluid biomarker,

blood-based biomarkers.

But I really hear your voice

and I generally wanted to

ask you from your expertise,

what can we do to get better at speaking

that health policy language?

- I think in some ways

it is not necessarily

scientists' job to be able

to communicate that directly,

but I do think it's important

to be aware of the potential

benefits and misuses,

as well as a little bit or have a friend

who knows what the legal landscape is

for what you are trying to do.

So if you are trying

to implement something,

what legal protections are

there in place if it goes wrong?

How could bad actors use it?

And also what is the emerging legislation

or things that policymakers

are looking at doing

to put these things into place?

These are all things that are good

to either keep in the back of your mind

or have someone on hand

who has a good sense

of those things,

and knowing those things on the front end

can help you design better trials

and studies to help more

people more effectively.

- Absolutely, and I agree.

I think probably one of the aspect

that I've seen through my past year

and our institution is that involvement

with some of the members of the community,

there are stakeholders,

in improving what they really need

that that can be better

translated in that health policy

in a more linear fashion

because there is a direct need,

although it doesn't necessarily mean

that it's always faster.

Have you had,

I know you mentioned how you work

more with international

groups at the moment,

and since this is an

international platform,

I do wonder how that can be different.

There are different needs,

like in the U.S., even

for what is covered,

we are talking about blood-based

biomarkers, for example.

Here we need to go

through insurance process.

When you go an international level,

there might be other aspects.

For example, I'm originally from Italy.

I know that the healthcare

system there works differently.

Is there something that

you would like to add

for that aspect

since you had that international

experience right now?

- Sure, so just to be 100% clear,

I didn't speak a little bit at first.

When I'm saying international

communities, we have a project

that involves us speaking to

international researchers.

But as far as the international component,

that really is another important thing

to keep in mind about policy,

particularly with things like

blood-based biomarkers and AI.

So with AI of course you

have different regulations

for what data can be collected

and how it can be used generally,

in the United States versus Europe,

which is covered by the GDPR,

which I can't remember what

that stands for at this moment.

Apologies.

- It's okay.

- The other thing to keep in mind

with blood-based biomarkers

and frankly any intervention

for Alzheimer's disease

is that the policy component

is vital to make sure

that those improvements

reach the people they need.

If we create a pill today

that cures Alzheimer's disease

and don't do any researcher work

on how much it's going to cost,

how it gets distributed,

how it gets shipped,

all we have done is we have

cured Alzheimer's disease

for the richest people in

the world and no one else.

So I think it's really

important to remember

that policy is really

the bridge to making sure

that the science achieves its grander goal

beyond that thing you were

funded for, for your grant,

beyond what you just need

to publish your paper.

Policy is what makes it happen.

- Absolutely. I agree,

and thank you so much.

That is a very difficult question.

I think you did a fantastic job answering.

(mellow music)

With respect to all the wonderful job

that you are doing,

how does the work of your PIA

is able to support your field of research?

- I would say our PIA is

a really great opportunity

to talk to people internationally.

We've got some folks

who've worked in Asia,

in Australia, in Europe,

all who are involved in the PIA.

And as you can imagine,

those policy landscapes

and the history and the risk profiles

of everyone in all those

regions is wildly different.

So knowing those other perspectives

and being able to communicate with people

is a really cool opportunity to be able

to learn without having

to do things yourself.

The other really great

thing I love about the PIA

is it does offer

some really great

opportunities for publication.

We had a working group

that published something

earlier this year

on bridging research policy and practise,

which was really exciting.

I was not a part of it,

but I was able to listen

in on some of the meetings

and it was really cool to hear everyone

going through all these

international plans

for Alzheimer's disease

and seeing how different countries

are approaching things for dementia care.

That was a really cool experience.

- Is there something that

really stayed with you

from that meeting on how each country

is approaching that dementia care part?

Since we were talking about that aspect,

the question prior,

is there something you would like to share

with our audience with that regard?

- Nothing super specific,

but just that it was

very heartening to see

how many different people

in different places

are working hard on

such an important issue

and who recognise that

this is not something

that is contained by borders.

This is something that affects

people all over the world

and it requires an international

approach to tackle it.

- Absolutely.

And so I know

that if you go through all the podcasts

that we have available,

each one of us is a different story

on how they joined their PIA.

So what brought you to the

PIA? How did you get involved?

- When I was working under my PI

as a graduate research assistant,

she had mentioned that they were looking

for some more members and some folks

to be the early career researcher

on the executive committee.

And I thought, "Well, I'm pretty early,"

which, very early considering

I still didn't have my MPH,

but I was really grateful to join

and really see the decision-making process

and be able to contribute

to putting on things

like events for AIC as a member

of the executive committee.

Because the other thing that I understand,

this is mostly aimed at

early career researchers,

the secret is that you

don't have to be an expert

to be a contributing member to a PIA.

You just have to be willing

to put the time and energy in,

and you can make a huge difference.

- Absolutely. And with you, I agree.

I think having that effort,

that energy, and I would

like to add creativity,

it's really what can help the PIA succeed

and also share what we are

doing with the community.

I think that's what I have observed

being part with our tech and

dementia PIA for example,

what I've seen from others,

just being committed to

the work and to the effort.

I don't know if you have

seen the same experience

with your health policy, with

other collaborators there.

- I feel like I really have,

and one of the really cool

things that I've experienced,

particularly when going

to in-person meetings

is speaking with people

who do not necessarily work in policy

but are interested and

want to keep abreast

of what's going on with it.

And that's always really nice

because, you know, the policy people,

we know what's going on with the policy,

but we don't always know what's going on

directly with the very sciencey,

the bench research sort of stuff.

So it's cool to have someone

to anchor us in that information.

- No, absolutely.

And that's why it's wonderful

to meet and collaborate.

I think these collaboration

now are growing,

and for example,

I think our two PIAs should

do something together,

a session on the policy

and the implication of

the digital biomarkers,

for example, because the

people building these tools

and the people thinking

about access and insurance

almost never shared the same rooms,

and the PIAs provide that opportunity,

that space, and it's very unique

to Alzheimer Association.

So it's very exciting.

So thinking about Alzheimer Association

and the big Alzheimer Association

International Conference coming up,

what does your PIA have planned,

and what are the aims

for the upcoming year as a start?

Will your PIA be doing anything

at this year's AIC?

And will you be presenting, attending?

Will I see you in person? (laughs)

- Unfortunately I won't be

able to make it in person,

but I'm excited for everyone who is.

Our PIA though is doing a

lot of really cool stuff.

So pull out your pencil and your notepad

because we've got a lot to list off.

On Saturday, July 11th,

we will be out there

for PIA day in the morning.

On Sunday, July 12th,

we will be doing an electronic

guided poster session.

We're titling it Context Matters:

Rethinking Dementia Risk Reduction

Beyond Individual Behaviours.

On Monday, July 13th,

we are going to be doing an intermission,

which, that I was involved

in ours last year.

That was probably my favourite one

because it's very free form

and it's just a way for

people to sit around

and really talk about what

they're interested in in policy

and what background

they're bringing to it.

Or people from all over

the world last year.

And I'm really sad I'm gonna miss it,

but I'm excited for the

people who can make it

to see what they'll be able to do.

On Tuesday, July 14th, we have

a featured research session

that's titled Health and

Dementia Care Field Gaps,

Priorities, and Promising

Initiatives Across Countries.

And then on Wednesday,

we will go ahead and

collapse from exhaustion.

- Excellent.

That sounds like

(Lillian laughs)

a very, very busy time.

- Yes.

- Yeah, so I will

definitely check this out.

Can you tell me more

about what usually your PIA does

during the year beyond,

like, the Alzheimer Association

International Conference?

What do you do?

I'm curious to see what you do differently

from our PIA, for example,

to be engaged with the community.

How do you communicate with

the community, your audience?

For example, do you have any newsletter?

Do you have any journal clubs?

So what do you do? Anything new this year?

- Yeah, we actually did a

journal club earlier this month

where we did a little meet the

authors, which was very cool.

Usually how we handle things

is after AIC, we all get together

and we think about what was great,

what were we so excited to talk about,

and what did people seem interested

in doing for the coming year.

And then we take that and sort

of roll that into our goals.

So far we've done a few

webinars on different topics.

Those are recorded and available

on the ISTAART website.

We did the journal club.

We are preparing

for our existing AIC events,

and then we also usually

do a working group

or try to aim towards a publication.

We're a newer PIA, so we are trying

to sort of get our feet

over what we wanna do as our routines,

but we are always really passionate

about the things that

we do go forward with.

- So you say you're new.

How many, do you know how many members

you have at the moment?

No. Oh, tough question.

It's okay.

- I don't off the top

of my head, I'm sorry.

- No, it's okay.

It was a tough question and I was like,

"I'll try and ask."

So if I wanted to join your PIA,

so what shall I do,

and is there any way for me

to get involved at this time?

- So at this time in the year,

the best thing you're gonna wanna do

is just keep your eyes open

for what we're doing at AIC.

And if you wanna join

and you are interested

in pursuing any research

or doing any publications with the group,

let us know

and we can roll those into

our goals for the next year

and then we'll send out communication.

Also, I apologise,

one of the things you mentioned

on your previous question

was how we communicate with people.

Our LinkedIn is the main one,

our LinkedIn, and then also we make sure

to include our events in the

weekly ISTAART newsletter.

- Excellent.

Thank you. No, thank you so much.

That was wonderful to hear.

(mellow music)

Thank you. It's time

to end today's podcast.

Before we go, I do have

a final question though.

What advice do you have

for someone who is just

learning about ISTAART,

and how has it helped you

and your career be

involved in this, ISTAART?

- Say, my advice for anyone

who is just learning about

ISTAART is to join a PIA.

Anything you are

tangentially interested in.

You do not have to be an expert.

And then also watch as

many recordings as you can.

They're right there.

You can speed 'em up if

you're pressed for time.

And also see how you can contribute.

You can even try and see

if they need any executive

committee members.

So once again, you do not

need the research experience

to join an executive committee.

Just a willingness to

organise, be involved,

and work towards those

goals for the group,

and being in there,

in the sauce, in the environment,

is a really great way

to meet new researchers,

learn what the terrain of a field is,

and the best ways that you can really move

for your career to advance.

- If you can think of two to three skills

that you have learned from this experience

of just being part of

the health policy PIA

that you didn't have before

or that you think that just by being

at, you know, university

or being working in the lab,

you will not be getting,

what are those skills?

- Don't know if it would

be a specific skill,

but it absolutely would be the knowledge

of what the international

policy situation looks like.

That's something that

obviously most researchers

are focusing locally on what's

going on in their country

or with their populations

they're working with.

And that was the case with

me before the policy PIA.

And since joining I've

become a lot more aware

of how these things differ

in, you know, Australia, how data sharing

and that stuff is different

versus if you are looking at

plans and research from China,

how those things work.

And that's been really helpful.

It's also been cool to connect

with senior researchers

and get a better idea of how

to interact appropriately

with folks as a researcher

and put a little bit of

extra polish on that.

- Absolutely.

And I think for me,

it's been beautiful,

because you're always a little bit afraid

of engage with senior scientists,

but the ISTAART and the PIAs

create that environment

where you're really able

to meet people from all over the countries

and in a more relaxed way

and you really feel part of the community.

So based on what you just said,

that being in the PIAs really allow you

to learn more about international policy,

shall we say that then be part of the PIA?

It is relevant from everybody,

regardless of whether

you are from the U.S.

or you are from a country

in Europe of Africa.

- Absolutely.

So in a lot of the work we do,

even if it doesn't apply to

absolutely every country,

we do try to be aware of

the importance of context

and not assuming that

one particular policy

is the default policy.

And we also try to make sure that

what we're doing is we're

looking at comparative things,

so that way we can take those findings

from different environments

and apply them to new ones.

I would say that yes,

it's relevant whether you're in the U.S.

or you're in South Africa or

wherever you are in the world

because everybody's

doing things differently

and everybody has great

lessons to teach everyone.

- Excellent. I couldn't agree more.

Thank you so much, Lillian,

for taking the time to join us today.

And thank you everybody else

for tuning in and listening.

You can find profiles on

myself and my brilliant guest

and information on how to become involved

in the ISTAART on our website

at dementiaresearcher.nihr.ac.uk

and also at alz.org/istaart.

There is a link in the show notes.

I am Vanessa Young,

and you have been listening

to the "Relay Podcast"

from Dementia Researcher

and Alzheimer Association.

Hit subscribe on YouTube,

on your favourite podcast app

to ensure you don't miss an episode.

Thank you.

Bye.

(upbeat music)

- [Voice Over] You have been listening

to the "Relay Podcast,"

delivered as a collaboration

between Dementia Researcher and ISTAART.

This podcast is made at

University College London

with generous funding

from the NIHR, Race Against Dementia,

Alzheimer's Association,

Alzheimer's Research UK,

and the Alzheimer's Society.

Please like and subscribe

and share your thoughts in the comments.

(upbeat music)