May 20, 2025 • 34 mins
John Reites interviews Dr. Paul Wicks, a neuropsychologist, expert in clinical research and consultant in digital health. They discuss Wicks' background, his journey in patient engagement, the importance of scientific communications, the role of peer-reviewed publications in building trust in research and the cultural impact of Star Wars.
Wicks shares insights on the evolution of patient communities, the impact of his TED Talks, and his current work in helping digital health companies effectively communicate their evidence and value. The conversation emphasizes the need for transparency and collaboration in clinical research to enhance patient involvement and trust. They also discuss practical tips for getting started in cliniacl research publications, the importance of community engagement, and how digital health is evolving.
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SPEAKER_00 (00:00):
something we've got a bit notorious for is we had so
(00:02):
many patients in some diseasesthat blinded trial participants
were using our platform tofigure out if they're in placebo
or not.
SPEAKER_02 (00:09):
I remember that.
SPEAKER_00 (00:10):
That's where the controversy
SPEAKER_01 (00:12):
came
SPEAKER_00 (00:12):
in.
SPEAKER_01 (00:12):
I remember getting like a few phone calls about
that actually.
So no, that's a, that's a blastin the past.
What, what ended up happeningwith that?
Thank you for joining inclusioncriteria, a clinical research
podcast hosted by me, JohnReitz.
This is an inclusivenon-corporate podcast focused on
the people and topics thatmatter to developing treatments
for everyone.
(00:33):
It's my personal projectintended to support you in your
career, connect with industryexperts and contribute to the
ideas that advance clinicalresearch.
Welcome to today's conversation.
Dr.
Wicks, good to see you today.
Thanks for joining us.
I really appreciate it.
SPEAKER_00 (00:49):
It's great to see you, Joel.
Thanks for having me.
SPEAKER_01 (00:51):
Today, we're going to talk about scientific
communications, digital health,and it's you and me.
So what are we going to talkabout?
We're going to hit Star Wars.
So I'm just forewarningeverybody.
If you're not a Star Wars fan,you need to just edge that out.
But who's Paul Wicks and what doyou do in clinical research?
SPEAKER_00 (01:09):
Sure.
So I'm a neuropsychologist bytraining.
So I specialize in specificparts of the brain that go wrong
or misfire when people have gotneurodegenerative conditions.
And when I started my training25 years ago, back in London, I
was studying ALS.
So you might know thatneurodegenerative, sadly,
rapidly fatal condition.
And my PhD was about the factthose people could also get
(01:31):
frontotemporal dementia, so areally difficult subject.
And one of the things that wewould do in the clinic is
clinical research and clinicaltrials.
But I took over the running ofan online community, an online
forum, like a bulletin board,where members of the clinic
would come and ask questionslike, why is there a placebo?
You know, if most people die in18 months, why do we need a
(01:51):
placebo?
I'm surely just see if we livefor 20 months or 24 months.
And then you'll know.
And so I became kind of aliaison between the researchers
and the community.
So that was really my entrywayinto clinical research.
SPEAKER_01 (02:04):
I had to go back and look too, because we had the
pleasure of getting introducedand believe it or not, the year
was around 2008.
So think about that, 2008.
I know you look just like youlooked in 2008.
SPEAKER_00 (02:14):
I was about to say, but we're looking good, John.
SPEAKER_01 (02:16):
I look a lot older, but that's what happens.
A mutual friend of ours said,hey, John's doing this stuff
over this innovative stuff andresearch.
He's dabbling in patientcommunities and thinking about
it.
Have you met Paul from PatientsLike Me?
UNKNOWN (02:27):
Yeah.
SPEAKER_01 (02:27):
And I don't even know if you remember that we
were in a hallway and you'relike, hey, and we just sort of
like just started nerding outand talking about these things.
And that's how we got to meet.
So tell people like, what wereyou doing back 13 years ago
doing patient communities,engaging people at Patients Like
Me?
SPEAKER_00 (02:43):
Yeah, so my work in London with a couple of hundred
patients grew to working forpatients like me, a
venture-backed startup out ofBoston, founded by a family
affected by ALS.
A whole bunch of MIT graduatescame together and built what is
a mashup between a registry andan online dating website.
So the concept was, you know, ifI've been diagnosed with a
(03:07):
condition like MS orParkinson's, it'd be really
useful for me to meet otherpeople like me.
And that definition of like mecould be same age, same
treatments.
It could be, well, both militaryveterans, right?
Or it could be we live in thisparticular region.
So we gave them the tools todefine what a patient like me
was.
(03:27):
And so combining the sort oftools like PROs that'll be
familiar to people in trials andregistries with the social
community was really theinnovation.
But we did quite a few things todo with clinical trials there as
well.
I think we're early.
But potentially quite excitingat the time.
SPEAKER_01 (03:45):
I think you hit the nail on the head.
I think early, right?
I think there was a lot ofinnovation happening at that
time.
And you were a part of a lot ofthat, which was always super
intriguing to me.
So you were there for a longtime, like 12, 13, some odd
years.
What was like the impetus forthe shift, right?
Because obviously, if you'redoing something innovative like
that, there's a lot you can doin clinical research, a lot of
(04:05):
different avenues you couldtake.
your scientific background givesyou a lot of opportunity.
So sort of what did you move to,but why the shift?
Like what was the sort of thepush to make the change in your
career?
SPEAKER_00 (04:18):
Sure, so I left academia in part because I saw
the pace of change was so slow.
So particularly the UK, which isoften a little bit behind the US
in terms of tech, was very slowto adopt technology.
It was very conservative withthis notion that the doctors
know best and that, you know,you've got to go to med school
for 10 or 15 years before youropinion is valuable.
And I found that incompatiblewith the amazing array of expert
(04:42):
knowledge and lived experiencethat I saw coming from people
living with a condition.
So it seemed like the US was alot more democratic in listening
to the voice of patients andalso much keener to harness
technology.
So what that looked like fortrials of patients like me was a
couple of different things.
One is we actually took all theplacebo data from a couple of
diseases and map them out ingraphs so that if you showed up
(05:06):
and you had ALS or Parkinson's,we would show you this is how
you're doing relative toeverybody else that's been in
the placebo elf trials, right?
So that context for an N of onecoming from all the data that's
being contributed by people intrials was very useful.
UNKNOWN (05:21):
Yeah.
SPEAKER_00 (05:21):
Another thing we did is we helped rapidly develop
patient-reported outcomequestionnaires.
So we helped develop andvalidate about 20 PROs on our
platform.
I think the one of which we'reproudest is one called the
CYBAT, which is the suicidalideation battery.
It was actually developed veryrapidly on our platform and then
went into the nasal sprayversion of ketamine, esketamine
clinical trial for suicidalideation and depression.
(05:44):
And then something we got a bitnotorious for is we had so many
patients in some diseases thatblinded trial participants were
using our platform to figure outif they're in placebo or not.
SPEAKER_02 (05:54):
I remember that.
SPEAKER_00 (05:55):
That's where the controversy came in.
SPEAKER_01 (05:58):
I remember getting a few phone calls about that,
actually.
So, no, that's a blast in thepast.
What ended up happening withthat?
Where did that resolve?
SPEAKER_00 (06:05):
So a few things had happened.
It really came from the basis ofself-experimentation.
So many people were trying totry out different therapies,
off-label medications, physicaltherapy, you name it.
But they realized that theycould actually build their own
tools, their own spreadsheetsand say, well, I'm a blinded
participant in this study, butif I start putting my outcome
(06:26):
data my way, I could determinefrom the side effects I'm
getting of my trial medication,whether or not I'm placebo.
And there was one trial where wehad about a third of everybody
in the study and they were usinga big spreadsheet and they were
dividing themselves by who hadneutropenia and who didn't.
And neutropenia is not a symptomof ALS.
So it was a side effect of thedrug.
(06:47):
And so they started trying torun their own t-tests,
statistical analysis on thedata.
So it was really unprecedented,but yeah, it was viewed as kind
of a big potential risk byregulators, by sponsors, by
ethicists.
SPEAKER_01 (07:00):
Yeah, of course.
People are innovators.
And they will find a way to findout what's important to them.
And I think you guys experiencedthat so much, right?
Because you were in such anengaging community of people
that were struggling with a lotof things and wanted to know
more about what was happening,how to treat it, and what I
really liked a lot about whatyou were doing.
So much of the writing and eventhe publications were about not
(07:23):
what people are trying to solvefor themselves, but truly like
people altruistically coming inand saying, I know the result of
this might come after I'mpassed.
I want to make sure I and passthis on to somebody else's
family.
And you saw, you remember seeingthe stories of that.
They were phenomenal.
And I think they sort of broughtthe heart of what clinical
resource was about, like at itscore, like this altruistic way
(07:45):
to do research for medicationsthat some people who are in the
study might not actually get achance to take in the future.
SPEAKER_00 (07:51):
Yeah, no, absolutely.
And I think one thing that bothof us have worked on and
interrogated is the socialcontract between researchers and
trial participants and reallyinterrogated whether or not now
in the modern era, there's aconditional altruism.
You know, I'm not just going toblindly take whatever
information My doctor says Ishould take.
I might say, well, I'll takepart in your research study.
(08:11):
Well, can I have accommodation?
Can I have my travel covered?
Are you going to set up awaiting room where my partner
can sit?
Who's going to look after mykids?
These are all questions that ifwe don't address, people with
busy lives aren't going to beable to take part.
Or increasingly, what we've bothrealized is the inequality that
sets up.
White-collar professional, maybeyou can take half a day off
(08:33):
work, but maybe if you're ashift worker...
Maybe you can't, right?
So I think fixing thatinequality is really needed,
particularly in today's world.
SPEAKER_01 (08:41):
Little known fact, you actually were one of the
original like TED presenters.
And I know this about you, and Iknow you probably don't want
people to know this, but it was2011, 2012 at the heyday of
prestige, where if someone did aTED talk, you were watching that
thing online.
You were one of thosepresenters.
I actually think you might'vedone it twice, but you did it.
(09:03):
So there's a lot of TEDx eventsnow, but in the past, you
remember this, Paul, and youshould take some credit here.
There were not a lot of peoplespeaking at TED.
And when you got on that redcarpet, it was a big deal.
How'd that feel?
What did that do for yourcareer?
Like, how did that sort ofchange your thinking around
sharing a big idea like this?
SPEAKER_00 (09:20):
Yeah, no, thank you.
You're right.
So yeah, 15 years ago, did yousee a TED Talk was something you
might say at lunch.
And TEDx are these locally runevents, right?
So you can basically set one up.
And so long as you show a coupleof official TED Talks and have
some speakers and set it upright, then you can kind of do
that locally.
So I did one locally in theBerkshires in Massachusetts for
a group of health techinnovators.
(09:41):
And it really pushed me to takea story about big data.
and personalize it.
So I was trying to show how thetools that we had developed
could help a lay person to thinklike a doctor, think like a
scientist.
And it was through that andthrough the nomination of a
friend of mine, Dr.
Max Little, who's a TED fellow,that I actually got to present a
big TED, the big scary one inMonterey, California, as it was,
(10:05):
it's in Vancouver now.
So I was one of 20 fellowsselected each year in the TED
fellows program to come and betrained.
And it was like, you know,presentation skills for Navy
SEALs.
They absolutely drilled us onhow to make a compelling point,
how to sort of get the highs andthe lows of these things, and
how to make your slides comeacross without any text, without
(10:25):
any bullet points, and reallytake that audience along with
you.
So it was the most exhilaratingfour minute presentation of my
life.
I spent a year, wordsmithingevery word of that four minutes.
But I looked around the audienceand I saw billionaires and
celebrities and tech founders.
And it was so amazing to be ableto have that impact and have
that story spread on behalf ofthe patients, on behalf of the
(10:48):
other innovators that I workedwith.
SPEAKER_01 (10:49):
Yeah, it's been an experience that will stick with
me for the rest of my life.
If anybody asks me, did you everdo a TED?
I can officially say no, but Iknow somebody well who did.
So you're like, you just make melook cooler at dinner table.
So thanks, Dr.
Wicks.
I appreciate that.
You know, real quick, I want todive into some topics that I
think will certainly expand someof the work you've been doing in
(11:10):
clinical research and unpack forsome of our listeners.
I think some key themes thatcould be really helpful for
them, not just sort of what'shappening, but also some
thoughts around a careertrajectory, tactics and
strategies they can employ intheir career today that might be
helpful and may not have been ontheir radar before.
But before we do that, telleverybody, what are you working
on now?
What are you doing today?
(11:31):
Because if someone goes to yourLinkedIn, they're going to see a
lot of things you're up to.
So in a nutshell, what are youdoing?
SPEAKER_00 (11:38):
Yeah, so at the moment, I'm an independent
consultant.
I work for myself at a companycalled Wix Digital Health.
And really what I focus on isworking with digital health
companies to help deliveroutsized value and impact for
their evidence, their revenue,and their awareness, and to tie
those things together reallythrough a lot of work that I
call SCICOM.
So both the side of whichstudies, what data do we have,
(11:59):
what evidence do we want todeliver?
And then once we've done thatwork, how do we communicate it?
Because so often we wait tillthe study's done and we're like,
great, we've done the study.
But we don't kind of use everypart of the buffalo.
We don't take the stake over themain data and turn it into a
regulatory submission.
We don't take the, you know, theChuck beef tacos that could turn
into infographics for LinkedIn,right?
(12:20):
We just tend to assume it's outthere.
So what I really work with istrying to string that all
together.
And yeah, tell stories thatcould go to different
stakeholders, whether that'sregulators, people that might be
paying at scale, patients, andthen your own users.
Your own users want to knowthey're using an innovative
product that's been proven tohelp them and understand how the
improvements are going.
So yeah, it's a fascinating job.
I get to work with a greatdiversity of companies and yeah,
(12:41):
that variety really keeps mealight.
SPEAKER_01 (12:43):
I think SciComm, besides sounding like a gamer
tag on Xbox, I think one of mykids actually has a name.
Sounds very close to that.
When I think about scientificcommunications and I think about
that as a practice, as somethingthat somebody does, as an
important skill that you need tohave in clinical research, Paul,
you obviously come to mind.
You're the, and I'm going to usethis, you are the Jedi Knight of
(13:05):
this work.
And I give you a lot of creditfor it.
But you kind of unpacked alittle bit of it.
For someone who's like, I havenever, I've been in clinical
research.
I've never heard the wordPSYCOMs or scientific
communications.
In a nutshell, what does thatmean?
SPEAKER_00 (13:17):
So in true note, fashion, my most frequently used
quote is Carl Sagan,extraordinary claims require
extraordinary evidence.
So if you're a digital healthinnovator, and you've made an
app that's like CBT for youngpeople with depression, or an AI
that can tell you whether or notyou need to go to the doctor,
that's an extraordinary claim.
People have to train for 20years to do either of those
(13:39):
things, right?
So if you're saying I made anapp, you're gonna have to prove
that that it does what it sayson the 10, that it's safe, and
reasonable people are going tohave questions.
Like if, you know, John and Iboth fill out the same questions
at the same time, do we get thesame answers?
Do we get the same answers at adifferent time of day or when
the server's busy?
You know, who's deciding whopulls those levers?
(14:01):
So a lot of it is kind ofexplaining how things work,
right?
Sort of proving your methods,showing your methods, but also
providing some reassurance andsome explanation, right?
The other thing I found it doesis it tends to keep people
honest, right?
So many startups are heldtogether by tape.
You know, there's often thisconcept of like designing the
plane whilst you're flying it,whilst you're building it.
And actually writing down, thisis how it works.
(14:23):
This is version one is veryuseful in crystallizing, moving
from the duct tape stage to thespreadsheet stage, to the SOP,
to the quality managementsystem.
There are steps along the way.
And I think generating peerreviewed evidence, especially
helps consolidate each of thosesteps along the way.
SPEAKER_01 (14:39):
Yeah, makes sense.
Dig into that a little bit too,because I think when there's
some listeners we have that areprobably really well
experienced, have a lot ofeducation background, have
co-authored a series ofpublications.
There's a number of otherpeople, and I run into them all
the time in clinical research,and they've never really had a
chance to contribute to apublication previously.
or a peer-reviewed publicationor go through that process.
(15:01):
And I think it's a reallyrewarding process because it's
challenging, right?
It's a different level ofthinking.
And so when you unpackpublications, especially
peer-reviewed publications, whyare they so important to some
people?
And then some people don't seemto understand they even exist.
SPEAKER_00 (15:17):
So I think the peer-reviewed literature grew
out of a couple of differentobservations.
And one is that When we do ourown science, we tend to do these
little tweaks and we tend togive ourselves these little
allowances and exceptions thatmean we can believe our own
biases.
We believe our own hype.
And really, science only standsif I give you the recipe and
(15:37):
someone on the other side of theworld can follow it and get
pretty much the same results.
And so where peer-reviewedscience grew from is when
someone makes an observationabout a frog or a butterfly or a
flower or something like that.
It should be relativelyuniversal.
because if you're the onlyperson that can find it then
you're some kind of magician oryou're deluding yourself right
so the point is to contribute toa body of knowledge that we can
(16:00):
all benefit from even when theone person who it always works
for isn't in the room you knowbending spoons then then i think
we've contributed to somethingso the challenge though is it is
a slow process right it's a slowpainstaking process it has a lot
of rules, regulations,traditions.
And it can take a lot if yourprimary work is on product
development or marketing.
(16:22):
then that can be verychallenging.
If you're working in moretraditional pharmaceutical
sponsors, there's a ton ofprocess that has to go into
that.
You can't just write the thing.
It has to be vetted by 40 or 50people.
So it's a big undertaking.
But I think the benefits aregenerally legitimacy and
engaging with the community.
So if you're going to beengaging with clinicians,
(16:43):
they're going to want tointerrogate the methods.
They want to see that you'rebeing a good actor in the
system, right?
So...
there are plenty of examples.
I've come across everything fromstem cell transplants to, you
know, Theranos, you know, wherethey wouldn't show they're
working.
And so increasingly now that hasraised the bar where you have to
(17:05):
show your methods.
It has to be replicable and itcan't all just be proprietary.
It can't be in a black boxbecause otherwise you don't have
trust.
So on some level, It's abouttrust and creating an
environment where you can showthat your ideas are so strong
that they stand by themselvesand that people should commit to
trying your drug or trying yourproduct or deploying it.
And increasingly, I think whatwe're seeing is a tiered
(17:27):
approach.
So particularly in digitalhealth, what you see from people
like the Digital MedicineSociety is say, well, if you
have a small amount of evidence,let's do a pilot.
We're not going to give this to10,000 people.
until we have, say, two pivotalRCTs that prove that it works.
And yeah, that's kind of thestandard that you see for drugs
as well, clearly.
And yeah, we're very sensitiveto the notion that there's
(17:48):
conflicts of interest, forexample.
You know, if I make the drug orif I own IP or if I own a patent
on it, I'm very motivated to sayhow brilliant it is or to say,
well, this trial failed theprimary outcome, but if you
squint and I really do apost-hoc analysis, then actually
it turns out to be brilliant.
Okay, but ideally...
your peer review publicationwould have published a protocol
(18:08):
about a year in advance.
So we can test whether or notwhat you said you'd do is the
same as what you actually did.
So it's all kind of methods andprocesses that allow us to be
more certain of the claims thatpeople make in medicine and
beyond.
SPEAKER_01 (18:22):
I think this trust piece is really important,
right?
Because the, you know, scienceis hard enough, right?
Being able to go through, buildsomething, replicate it, and
then have other people look atyour data and interrogate it in
a very kind of iron sharpensiron way.
Make sure that what you'resaying, like you said, is
repeatable and enforceable.
I think that trust is so key.
(18:43):
And it's why I actually wouldencourage people, if you're in
clinical research and you'rethinking about something else to
do to expand your CV, expandyour career, one of the best
areas.
And actually one of the thingsthat sort of helped me a lot was
getting involved with smarterpeople that are doing
publications and gettinginvolved in contributing as a
co-author to those.
I'll never forget, Paul, like Ihad friends of ours, Dr.
(19:04):
Amir Kalali, Elisa Cascade, likethe two of them were actually in
a meeting and Amir gets a lot ofcredit for this.
He said, hey, John, you need todo publications.
And I literally was like, what'sa publication?
I didn't know.
It was back in like 2002, 2003era.
And he said, well, come on andwe're going to teach you.
I got to do a lot of legwork,which was really helpful, right?
And you should.
(19:24):
But I got to sort of get anearly sense of that process.
And for me, the coolest partwas, you know, you do this work
and then you wait like a year.
You never hear anything.
And then boom, it's publishedand you saw your name.
I mean, I was like number six onthere, but it was like, wow, we
did that.
Like we proved somethingmeaningful.
And I got to tell you that forme, So I love what you're
saying.
I'd encourage anybody to reallydo that.
(19:46):
If somebody is in pharma,someone's in a CRO, a supplier
company, and they want to dosomething with a publication,
what's an easy way they canstart?
What's something they could dothat's maybe not trying to get
the BMJ to publish my life'swork?
What's something they could dothat would get them into this
mode and just start doingsomething in publications?
UNKNOWN (20:05):
Yeah.
SPEAKER_00 (20:06):
So I think you're right.
It can be daunting.
I think a great place to startis letters to the editor, right?
If someone's written somethingand you have something to
contribute, generally editorsare very keen to have that
dialogue in their journals.
Be nice.
It's not your opportunity tolike throw shade on folks, but
to come with your ideas and say,you know, have the authors
considered this other point or,hey, this reminds me of
(20:26):
something from another fieldthat you may not have
considered, right?
So it's an opportunity to behelpful and useful.
I think the other potential issort of opinion pieces, you
know, so even if you don't havea ton of data, if you have
synthesized a whole bunch ofstuff that's going on in the
field and you have a particularview that you want to advance,
then I think, again, publishers,editors are very interested in
that.
(20:46):
But you're right, the best wayis to sort of collaborate with
other people that have done itbefore.
There are these authorshipguidelines called ICMJE that
basically state how much workyou have to do to be an author
on a paper.
So in the bad old days, it wouldbe everyone in the department
gets to be on the paper orwhoever's paying the bills gets
to be on the paper or whatever.
And now increasingly what we dois we say, well, everyone has to
(21:08):
make an intellectualcontribution, right?
So that means that when thepaper goes out, Each of you,
whether six authors or 20, areintellectually responsible for
the content.
And you know, if it makes apoint, you should be able to
defend it.
So that means that you as agroup have got some consensus on
a point.
Yeah, again, talking about thiscrystallizing what we really
think.
Writing it down really helpswith that.
(21:28):
For me personally, I'm often theperson that writes the title.
Most people read the title, afew people read the abstract,
and then a very small number ofpeople will read the whole paper
and go through the references.
So if you can grab people'sattention with the main point of
your title, or just get yournarrative talking points across
in the abstract, that goes along way to it.
So you could bring differentskills, whether that's writing,
statistical analysis, maybe evenjust the project manager, who
(21:51):
makes sure all the signaturescome to life, but you're
contributing intellectually.
There's a whole bunch ofdifferent roles that you can
play.
SPEAKER_01 (21:58):
One of the ones I really like is posters, right?
So if you go to a conference,we've done some, we did some
together actually a long timeago.
You'd go to a poster andessentially in a poster, there's
a conference, they are acceptingapplications.
You create your poster, you doyour research, you show your
graphs, you show your objectivesand what your results were.
You submit that and it's sort ofa really important but lighter
(22:21):
workload to a full peer-reviewedpublication, way to get in and
present what you've been workingon.
I did publish personally, I knowyou have too, a a lot of posters
because it was really goodpractice, but it was also a way
to get a simple idea that wasn'tas complex out the door and to
really engage the community withthat.
And so, yeah, I think it'sgreat.
SPEAKER_00 (22:38):
No, I think it's great.
I've just been doing somecoaching and mentoring actually
with an up-and-coming scientistat one of my clients.
They just presented at aconference and used a lot of the
tips and tricks that I'veaccumulated over the years.
For example, you know, havinghandouts of your poster because
you might meet people in acorridor and not at the poster
session.
You want to give it to them.
Having QR codes, having a callto action, but also engaging in
social media, right?
(22:59):
So LinkedIn hashtags areincreasingly becoming useful.
So if someone's attending ameeting, you know, the algorithm
seems to know this and sort ofshows you posters and content
from other people.
But one thing people sleep on alot is not uploading the poster
to somewhere like ResearchGateor Figshare so that after the
conference is over, that PDF iskind of there forever.
So, you know, I think there arelots of things you can do to
(23:21):
extend the shelf life of thosetypes of things and get a lot
more value out of them for sure.
SPEAKER_01 (23:25):
I think one of the tips for me is you and I are
co-authors on a work, but one ofthem we did was with the Nature,
the MPJ article.
That was so fun to do, theco-authors on that.
Just being able to meet and talkabout these topics, review our
data was awesome.
I'll never forget it.
It's almost two years old.
On a weekly basis, I have aGoogle tracker.
I get a hit that says it's beenreferenced, right?
(23:46):
And I go look at the attributionand I'm like, oh, and that
actually helps me kind of diginto it.
Somebody is also on this idea orsomeone's also curious about
inclusion in research orsomeone's also...
really passionate aboutdecentralizing a study and being
very measured about the pros andcons.
I found the best publicationsbecause people attribute that
publication, funny enough.
So for what it's worth, I thinkyou can go into Google Scholar,
(24:07):
you can track that.
It's a super powerful tool.
I get a lot of my reading fromthat because you're right.
People don't go on LinkedIn andpost, here's this publication
just read, you should check itout.
And I hope people do that more.
But in the interim, That's thesolution that's been working for
me.
SPEAKER_00 (24:21):
Yeah,
SPEAKER_01 (24:21):
no, I think
SPEAKER_00 (24:22):
it's a great way to find your people, find your
tribe, right?
SPEAKER_01 (24:24):
It is.
Yeah, it is.
And I mean, shifting gears alittle bit, the expert area that
I want our audience to thinkabout with you is scientific
communications, like all thatembodies so much of the good
work you've done and so much youmove forward.
The digital health angle,though, equally is important
because obviously you've been inthere since the early days.
You understand the model andyou've been a big proponent of
(24:44):
how to Make digital health verynormal, make it the standard.
So like, tell us, when does theword digital come out?
When is just everything we talkabout digital health become
health?
Is that any closer?
We used to say this like 10years ago.
And I still see digital healthlike the index on that word.
So is this more of the standard?
Is it becoming normal?
Is that word going to getdropped at some point?
SPEAKER_00 (25:05):
I think we're still pretty far away.
I think there was a big hypebubble during COVID, especially,
right, where we thought thateverything would be entirely
sort of app-based or digital.
When we sort of returned to thephysical world, we saw that snap
back.
But one of the challenges was wedidn't see the payment pathways
being put in.
So, for example, there's a greatapp if you have insomnia called
(25:27):
Sleepio, and it is approved byNICE in the NHS in England,
which means it's supposed to bereimbursed and freely available.
But no one will pay for it.
in the NHS.
And so you can't get this appthat works, that is
evidence-based, that has 20years of trials.
And so what that means is if yougo to the doctor and you say
you've got insomnia, if theyhaven't heard of the digital
tool, they'll probably give yousleeping tablets.
(25:49):
And those could be habit formingand those can have side effects,
right?
So I do think we still have aways to go.
It's just that thetransformation is taking longer
than we expect.
But the benefit would be once itis there, that's the new normal,
right?
That's the new standard.
So unfortunately, it's takinglonger than we think.
But I think it'll be once it'sinstalled, it'll be a lot more
permanent, a lot more consistentrather than previous systems.
SPEAKER_01 (26:10):
It's a measured response.
It's fair.
I hope you're wrong.
I hope it goes faster.
I would love
SPEAKER_00 (26:15):
to wake up tomorrow and all the fax machines in the
NHS have been destroyed and yougo to the doctor and they don't
give you the clipboard with thesame questions like, are you
still male?
How much do you weigh?
Is there any chance you could bepregnant?
And you're like, come on, guys.
You have my full body MRI scan.
You have my genome.
You have my electronic medicalrecords from 20 insurers.
Why are we doing this?
You still want to know my middlename?
What's going on?
(26:35):
We can do better.
SPEAKER_01 (26:35):
This is called doing the hard work.
That's what we do every day,right?
We're going to move this thing.
It's just going to take time.
Absolutely.
Persistence is what wins in ourindustry.
If you're in clinical research,and I hope you're hearing that
from Paul, persistence is theword you should just make on
your shirt.
SPEAKER_00 (26:52):
The slow boring of hard boards is how I've heard it
described.
SPEAKER_01 (26:57):
Before we move on from the digital health point,
when you think about digitalhealth and scientific
communications, we sort of heardeverything you talked about in
science communications and theimportance and value of that.
But if I'm in a digital healthcompany or I'm trying to get
something around digital healthmoved forward, How's the
intersection of SciComm help mydigital health move forward?
(27:17):
How should I at a digital healthcompany be thinking about
SciComm to actually researchbetter or publish my evidence
better?
SPEAKER_00 (27:25):
Yeah, no, that's a great question.
So what I always recommendpeople do is benchmark where
they are right now relative totheir competitors for their age
and stage.
So if you just startedyesterday, it's fine that you
don't have a paper in theLancet.
But if you've been going for 20years and you've got five
doctors and you haven'tpublished anything, that looks a
little suspect, right?
So it's about appropriatelycalibrating that.
You said earlier aboutconferences.
I think abstracts are a greatway of crystallizing and getting
(27:47):
you to be concise, right?
If you have to run a 300-wordabstract, guess what?
You're not going to fit in thewhole kitchen sink.
You've got to stick to the mainpoints.
And then, yeah, I think there'sa mixed diet of editorials,
opinion pieces, primary datapieces, and then re-analysis of
your data.
Because often if you've gotthousands of patients with a
condition, just the data thatyou're collecting routinely is
(28:07):
probably one of the richest datasources out there.
So either work on that with yourown data science teams or
partner with other academicswho'd be really keen to analyze
that data.
And yeah, you're essentiallyleaving breadcrumbs that says,
we show our methods, we do ourwork in the public spotlight,
and we engage with thecommunity.
SPEAKER_01 (28:23):
So expert area, SciComm?
Second expert area, digitalhealth.
Third expert area, Star Wars.
Yes.
Can I just ask, and again, thisis where everybody just stops
listening and watching and moveson with their career, and we
just keep talking, but in allseriousness...
What is it about Star Wars thatwe love it so much and we can
(28:44):
not have talked to each otherfor six months, get on the phone
and start nerding out about StarWars?
What is it?
SPEAKER_00 (28:49):
So I know for me, it's very personal.
Some of my earliest memories aregoing around a supermarket and
there being a toy section.
And I didn't want to go aroundthe supermarket with my mom.
And I'd be like, can I go lookat the toys and just sit there
looking at like Jabba's Palaceand, you know, AT-ATs and
whatever.
But also when I was a kid, Ilived in Switzerland for a few
years and I didn't speak French.
So the TV made no sense.
And all I had was thesevideotapes.
(29:11):
And so, you know, the originaltrilogy were like in the VCR all
the time.
And so, you know, I had the toysand I had the movies and stuff.
And so it was just big presencein my life.
And I think what's beeninteresting is I feel like
liking Star Wars was arelatively unusual niche thing
about, you know, when I was akid.
I would play the video games,the computer games, X-Wing,
(29:32):
especially these simulatorswhere, you know, you were kind
of managing the shields and allthis kind of stuff were really
great.
And then sometime around thelate 90s, early 2000s, suddenly
everyone was into Star Wars,right?
There's like Darth Vaderbreakdancing and Yoda t-shirts
and stuff.
And I'm like, well, this is coolbecause there's more stuff,
there's more content.
But there's also a little bit oflike, huh, now it's kind of
(29:53):
ubiquitous.
Maybe it doesn't feel as specialanymore, right?
And yeah, so it's gone throughdifferent evolutions for me.
But, you know, you can see I'mold school, right?
Just the bits and pieces hereof, you know, the Millennium
Falcon.
And I've got a TIE bomber overhere.
I've got, you can't see it.
This is Darth Vader taking hisat-at for a walk is my
bookshelf.
And of course, I've just enjoyedAndor, which has been a
(30:14):
tremendous experience and, youknow, restored my faith in the
Force.
SPEAKER_01 (30:18):
Yeah, no spoilers here.
No spoilers.
No spoilers here if you'rewatching.
Yeah, it's funny.
I kind of think it's a lot likea MacBook.
Do you remember?
I don't know if you did thistoo.
I got a MacBook like reallyearly on and I would walk into
the office and there'd be abunch of PCs and people like,
what are you doing?
And I kind of felt like I was inthe special cool nerd club of
nerds that liked tech and kindof a Mac kind of got me.
(30:40):
Like I was just really, for me,it was really like business and
art together.
Yes.
UNKNOWN (30:45):
Yeah.
SPEAKER_01 (30:46):
Yeah, still have mine.
Like my original one with all mygoofy stickers is still in
there.
And then fast forward now, I wasactually out and somebody, I
said, well, are you going to geta Mac or PC?
And they looked at me like, I'mgetting a Mac.
Almost like, why would I get aPC?
And that, when you said that,that's kind of the inflection
point for me.
But listen, Star Wars for me wasthe same.
It was Return of the Jedi.
Big deal in my house.
I swear.
(31:06):
I think I had every speeder bikeI could get my hands on or build
with a Lego set.
And for me, it was, this is whatwe watched, right?
And VHSs, and I watched thiswith my family, and TV wasn't as
cool back then.
This is what we did.
And just...
Again, for you only, Paul.
And it's so funny because Ididn't set you up or pay you
money to talk about VHSs, butsomething to show you.
(31:26):
So I don't know if you can seethis.
Oh, yeah, yeah, yeah.
So one of the things I didduring COVID was super nerdy,
was doing collectibles that aregraded.
And one of the things I foundwas old sealed VHSs in like
pristine condition, but like theoriginal, original version.
And I don't want to go all intoit, but there's ways to figure
out that this was like a firstor second edition ever printed.
(31:47):
So I have some of those.
And so this is the original StarWars VHS.
Right.
Things like this where, talkingabout sci-coms, right, where
you're talking about how do Ipublish and tell people about my
(32:08):
work so they'll be connected andunderstand me and talk to me.
Star Wars was like the dooropener, right?
It was where all the people thatkind of were in the clubs that I
wanted to be a part of andwanted to recognize me really
opened up.
So I think that was what wasimpactful for me.
SPEAKER_00 (32:21):
Absolutely.
I mean, I've had a couple ofPoints in my career where it's
came back.
So I've been working in ALS for22 years, as you know.
So ALS, terrible disease, 18months survival.
I have tracked the data of orinteracted with or participated
with about 12,000 humans whohave died as a result of ALS.
And particularly when I wastraining and particularly when I
was working so hard every day,in my head, it was like the
(32:44):
Rebel Alliance versus the DeathStar, right?
I see these populations.
I would get an email every weekof who's died.
drip, drip, drip, drip, drip ofthis.
And it was incredibly difficult.
And it was one of the ways thatI kept that fire going within me
of going like, I'm going tospend the next 20 years and I
might make a screw on the, youknow, photon torpedo that
becomes the thing that goes downthe trench.
(33:05):
We're like, there are no heroesin research as such, right?
We're all just making littlescrews and bolts and things on
it.
But that was a useful frame.
So that was one aspect to it.
And then I think another aspectthat came through was just, you
know, appreciating great art,like appreciating the great
shows that have been recently indifferent riffs on it has been
(33:27):
really great.
So it's something that I canshare with my children.
They love it.
And yeah, it's really fun.
SPEAKER_01 (33:32):
Paul, if someone wants to connect with you, they
want to dig in on science comms.
They just want to be connectedwith you.
They have some work they want togive you.
How do they get ahold of you?
UNKNOWN (33:39):
Yeah.
SPEAKER_00 (33:40):
Best way to find me is on LinkedIn.
LinkedIn is like my operatingsystem at this point.
So it's just Paul Wicks and lookfor this guy.
And yeah, I'd love to talk toyou.
SPEAKER_01 (33:48):
And if you watch his TED Talk and you comment on
there that he looks exactly thesame as he does right now, you
get a bonus point.
something we've got a bit notorious for is we had so
(00:02):
many patients in some diseasesthat blinded trial participants
were using our platform tofigure out if they're in placebo
or not.
SPEAKER_02 (00:09):
I remember that.
SPEAKER_00 (00:10):
That's where the controversy
SPEAKER_01 (00:12):
came
SPEAKER_00 (00:12):
in.
SPEAKER_01 (00:12):
I remember getting like a few phone calls about
that actually.
So no, that's a, that's a blastin the past.
What, what ended up happeningwith that?
Thank you for joining inclusioncriteria, a clinical research
podcast hosted by me, JohnReitz.
This is an inclusivenon-corporate podcast focused on
the people and topics thatmatter to developing treatments
for everyone.
(00:33):
It's my personal projectintended to support you in your
career, connect with industryexperts and contribute to the
ideas that advance clinicalresearch.
Welcome to today's conversation.
Dr.
Wicks, good to see you today.
Thanks for joining us.
I really appreciate it.
SPEAKER_00 (00:49):
It's great to see you, Joel.
Thanks for having me.
SPEAKER_01 (00:51):
Today, we're going to talk about scientific
communications, digital health,and it's you and me.
So what are we going to talkabout?
We're going to hit Star Wars.
So I'm just forewarningeverybody.
If you're not a Star Wars fan,you need to just edge that out.
But who's Paul Wicks and what doyou do in clinical research?
SPEAKER_00 (01:09):
Sure.
So I'm a neuropsychologist bytraining.
So I specialize in specificparts of the brain that go wrong
or misfire when people have gotneurodegenerative conditions.
And when I started my training25 years ago, back in London, I
was studying ALS.
So you might know thatneurodegenerative, sadly,
rapidly fatal condition.
And my PhD was about the factthose people could also get
(01:31):
frontotemporal dementia, so areally difficult subject.
And one of the things that wewould do in the clinic is
clinical research and clinicaltrials.
But I took over the running ofan online community, an online
forum, like a bulletin board,where members of the clinic
would come and ask questionslike, why is there a placebo?
You know, if most people die in18 months, why do we need a
(01:51):
placebo?
I'm surely just see if we livefor 20 months or 24 months.
And then you'll know.
And so I became kind of aliaison between the researchers
and the community.
So that was really my entrywayinto clinical research.
SPEAKER_01 (02:04):
I had to go back and look too, because we had the
pleasure of getting introducedand believe it or not, the year
was around 2008.
So think about that, 2008.
I know you look just like youlooked in 2008.
SPEAKER_00 (02:14):
I was about to say, but we're looking good, John.
SPEAKER_01 (02:16):
I look a lot older, but that's what happens.
A mutual friend of ours said,hey, John's doing this stuff
over this innovative stuff andresearch.
He's dabbling in patientcommunities and thinking about
it.
Have you met Paul from PatientsLike Me?
UNKNOWN (02:27):
Yeah.
SPEAKER_01 (02:27):
And I don't even know if you remember that we
were in a hallway and you'relike, hey, and we just sort of
like just started nerding outand talking about these things.
And that's how we got to meet.
So tell people like, what wereyou doing back 13 years ago
doing patient communities,engaging people at Patients Like
Me?
SPEAKER_00 (02:43):
Yeah, so my work in London with a couple of hundred
patients grew to working forpatients like me, a
venture-backed startup out ofBoston, founded by a family
affected by ALS.
A whole bunch of MIT graduatescame together and built what is
a mashup between a registry andan online dating website.
So the concept was, you know, ifI've been diagnosed with a
(03:07):
condition like MS orParkinson's, it'd be really
useful for me to meet otherpeople like me.
And that definition of like mecould be same age, same
treatments.
It could be, well, both militaryveterans, right?
Or it could be we live in thisparticular region.
So we gave them the tools todefine what a patient like me
was.
(03:27):
And so combining the sort oftools like PROs that'll be
familiar to people in trials andregistries with the social
community was really theinnovation.
But we did quite a few things todo with clinical trials there as
well.
I think we're early.
But potentially quite excitingat the time.
SPEAKER_01 (03:45):
I think you hit the nail on the head.
I think early, right?
I think there was a lot ofinnovation happening at that
time.
And you were a part of a lot ofthat, which was always super
intriguing to me.
So you were there for a longtime, like 12, 13, some odd
years.
What was like the impetus forthe shift, right?
Because obviously, if you'redoing something innovative like
that, there's a lot you can doin clinical research, a lot of
(04:05):
different avenues you couldtake.
your scientific background givesyou a lot of opportunity.
So sort of what did you move to,but why the shift?
Like what was the sort of thepush to make the change in your
career?
SPEAKER_00 (04:18):
Sure, so I left academia in part because I saw
the pace of change was so slow.
So particularly the UK, which isoften a little bit behind the US
in terms of tech, was very slowto adopt technology.
It was very conservative withthis notion that the doctors
know best and that, you know,you've got to go to med school
for 10 or 15 years before youropinion is valuable.
And I found that incompatiblewith the amazing array of expert
(04:42):
knowledge and lived experiencethat I saw coming from people
living with a condition.
So it seemed like the US was alot more democratic in listening
to the voice of patients andalso much keener to harness
technology.
So what that looked like fortrials of patients like me was a
couple of different things.
One is we actually took all theplacebo data from a couple of
diseases and map them out ingraphs so that if you showed up
(05:06):
and you had ALS or Parkinson's,we would show you this is how
you're doing relative toeverybody else that's been in
the placebo elf trials, right?
So that context for an N of onecoming from all the data that's
being contributed by people intrials was very useful.
UNKNOWN (05:21):
Yeah.
SPEAKER_00 (05:21):
Another thing we did is we helped rapidly develop
patient-reported outcomequestionnaires.
So we helped develop andvalidate about 20 PROs on our
platform.
I think the one of which we'reproudest is one called the
CYBAT, which is the suicidalideation battery.
It was actually developed veryrapidly on our platform and then
went into the nasal sprayversion of ketamine, esketamine
clinical trial for suicidalideation and depression.
(05:44):
And then something we got a bitnotorious for is we had so many
patients in some diseases thatblinded trial participants were
using our platform to figure outif they're in placebo or not.
SPEAKER_02 (05:54):
I remember that.
SPEAKER_00 (05:55):
That's where the controversy came in.
SPEAKER_01 (05:58):
I remember getting a few phone calls about that,
actually.
So, no, that's a blast in thepast.
What ended up happening withthat?
Where did that resolve?
SPEAKER_00 (06:05):
So a few things had happened.
It really came from the basis ofself-experimentation.
So many people were trying totry out different therapies,
off-label medications, physicaltherapy, you name it.
But they realized that theycould actually build their own
tools, their own spreadsheetsand say, well, I'm a blinded
participant in this study, butif I start putting my outcome
(06:26):
data my way, I could determinefrom the side effects I'm
getting of my trial medication,whether or not I'm placebo.
And there was one trial where wehad about a third of everybody
in the study and they were usinga big spreadsheet and they were
dividing themselves by who hadneutropenia and who didn't.
And neutropenia is not a symptomof ALS.
So it was a side effect of thedrug.
(06:47):
And so they started trying torun their own t-tests,
statistical analysis on thedata.
So it was really unprecedented,but yeah, it was viewed as kind
of a big potential risk byregulators, by sponsors, by
ethicists.
SPEAKER_01 (07:00):
Yeah, of course.
People are innovators.
And they will find a way to findout what's important to them.
And I think you guys experiencedthat so much, right?
Because you were in such anengaging community of people
that were struggling with a lotof things and wanted to know
more about what was happening,how to treat it, and what I
really liked a lot about whatyou were doing.
So much of the writing and eventhe publications were about not
(07:23):
what people are trying to solvefor themselves, but truly like
people altruistically coming inand saying, I know the result of
this might come after I'mpassed.
I want to make sure I and passthis on to somebody else's
family.
And you saw, you remember seeingthe stories of that.
They were phenomenal.
And I think they sort of broughtthe heart of what clinical
resource was about, like at itscore, like this altruistic way
(07:45):
to do research for medicationsthat some people who are in the
study might not actually get achance to take in the future.
SPEAKER_00 (07:51):
Yeah, no, absolutely.
And I think one thing that bothof us have worked on and
interrogated is the socialcontract between researchers and
trial participants and reallyinterrogated whether or not now
in the modern era, there's aconditional altruism.
You know, I'm not just going toblindly take whatever
information My doctor says Ishould take.
I might say, well, I'll takepart in your research study.
(08:11):
Well, can I have accommodation?
Can I have my travel covered?
Are you going to set up awaiting room where my partner
can sit?
Who's going to look after mykids?
These are all questions that ifwe don't address, people with
busy lives aren't going to beable to take part.
Or increasingly, what we've bothrealized is the inequality that
sets up.
White-collar professional, maybeyou can take half a day off
(08:33):
work, but maybe if you're ashift worker...
Maybe you can't, right?
So I think fixing thatinequality is really needed,
particularly in today's world.
SPEAKER_01 (08:41):
Little known fact, you actually were one of the
original like TED presenters.
And I know this about you, and Iknow you probably don't want
people to know this, but it was2011, 2012 at the heyday of
prestige, where if someone did aTED talk, you were watching that
thing online.
You were one of thosepresenters.
I actually think you might'vedone it twice, but you did it.
(09:03):
So there's a lot of TEDx eventsnow, but in the past, you
remember this, Paul, and youshould take some credit here.
There were not a lot of peoplespeaking at TED.
And when you got on that redcarpet, it was a big deal.
How'd that feel?
What did that do for yourcareer?
Like, how did that sort ofchange your thinking around
sharing a big idea like this?
SPEAKER_00 (09:20):
Yeah, no, thank you.
You're right.
So yeah, 15 years ago, did yousee a TED Talk was something you
might say at lunch.
And TEDx are these locally runevents, right?
So you can basically set one up.
And so long as you show a coupleof official TED Talks and have
some speakers and set it upright, then you can kind of do
that locally.
So I did one locally in theBerkshires in Massachusetts for
a group of health techinnovators.
(09:41):
And it really pushed me to takea story about big data.
and personalize it.
So I was trying to show how thetools that we had developed
could help a lay person to thinklike a doctor, think like a
scientist.
And it was through that andthrough the nomination of a
friend of mine, Dr.
Max Little, who's a TED fellow,that I actually got to present a
big TED, the big scary one inMonterey, California, as it was,
(10:05):
it's in Vancouver now.
So I was one of 20 fellowsselected each year in the TED
fellows program to come and betrained.
And it was like, you know,presentation skills for Navy
SEALs.
They absolutely drilled us onhow to make a compelling point,
how to sort of get the highs andthe lows of these things, and
how to make your slides comeacross without any text, without
(10:25):
any bullet points, and reallytake that audience along with
you.
So it was the most exhilaratingfour minute presentation of my
life.
I spent a year, wordsmithingevery word of that four minutes.
But I looked around the audienceand I saw billionaires and
celebrities and tech founders.
And it was so amazing to be ableto have that impact and have
that story spread on behalf ofthe patients, on behalf of the
(10:48):
other innovators that I workedwith.
SPEAKER_01 (10:49):
Yeah, it's been an experience that will stick with
me for the rest of my life.
If anybody asks me, did you everdo a TED?
I can officially say no, but Iknow somebody well who did.
So you're like, you just make melook cooler at dinner table.
So thanks, Dr.
Wicks.
I appreciate that.
You know, real quick, I want todive into some topics that I
think will certainly expand someof the work you've been doing in
(11:10):
clinical research and unpack forsome of our listeners.
I think some key themes thatcould be really helpful for
them, not just sort of what'shappening, but also some
thoughts around a careertrajectory, tactics and
strategies they can employ intheir career today that might be
helpful and may not have been ontheir radar before.
But before we do that, telleverybody, what are you working
on now?
What are you doing today?
(11:31):
Because if someone goes to yourLinkedIn, they're going to see a
lot of things you're up to.
So in a nutshell, what are youdoing?
SPEAKER_00 (11:38):
Yeah, so at the moment, I'm an independent
consultant.
I work for myself at a companycalled Wix Digital Health.
And really what I focus on isworking with digital health
companies to help deliveroutsized value and impact for
their evidence, their revenue,and their awareness, and to tie
those things together reallythrough a lot of work that I
call SCICOM.
So both the side of whichstudies, what data do we have,
(11:59):
what evidence do we want todeliver?
And then once we've done thatwork, how do we communicate it?
Because so often we wait tillthe study's done and we're like,
great, we've done the study.
But we don't kind of use everypart of the buffalo.
We don't take the stake over themain data and turn it into a
regulatory submission.
We don't take the, you know, theChuck beef tacos that could turn
into infographics for LinkedIn,right?
(12:20):
We just tend to assume it's outthere.
So what I really work with istrying to string that all
together.
And yeah, tell stories thatcould go to different
stakeholders, whether that'sregulators, people that might be
paying at scale, patients, andthen your own users.
Your own users want to knowthey're using an innovative
product that's been proven tohelp them and understand how the
improvements are going.
So yeah, it's a fascinating job.
I get to work with a greatdiversity of companies and yeah,
(12:41):
that variety really keeps mealight.
SPEAKER_01 (12:43):
I think SciComm, besides sounding like a gamer
tag on Xbox, I think one of mykids actually has a name.
Sounds very close to that.
When I think about scientificcommunications and I think about
that as a practice, as somethingthat somebody does, as an
important skill that you need tohave in clinical research, Paul,
you obviously come to mind.
You're the, and I'm going to usethis, you are the Jedi Knight of
(13:05):
this work.
And I give you a lot of creditfor it.
But you kind of unpacked alittle bit of it.
For someone who's like, I havenever, I've been in clinical
research.
I've never heard the wordPSYCOMs or scientific
communications.
In a nutshell, what does thatmean?
SPEAKER_00 (13:17):
So in true note, fashion, my most frequently used
quote is Carl Sagan,extraordinary claims require
extraordinary evidence.
So if you're a digital healthinnovator, and you've made an
app that's like CBT for youngpeople with depression, or an AI
that can tell you whether or notyou need to go to the doctor,
that's an extraordinary claim.
People have to train for 20years to do either of those
(13:39):
things, right?
So if you're saying I made anapp, you're gonna have to prove
that that it does what it sayson the 10, that it's safe, and
reasonable people are going tohave questions.
Like if, you know, John and Iboth fill out the same questions
at the same time, do we get thesame answers?
Do we get the same answers at adifferent time of day or when
the server's busy?
You know, who's deciding whopulls those levers?
(14:01):
So a lot of it is kind ofexplaining how things work,
right?
Sort of proving your methods,showing your methods, but also
providing some reassurance andsome explanation, right?
The other thing I found it doesis it tends to keep people
honest, right?
So many startups are heldtogether by tape.
You know, there's often thisconcept of like designing the
plane whilst you're flying it,whilst you're building it.
And actually writing down, thisis how it works.
(14:23):
This is version one is veryuseful in crystallizing, moving
from the duct tape stage to thespreadsheet stage, to the SOP,
to the quality managementsystem.
There are steps along the way.
And I think generating peerreviewed evidence, especially
helps consolidate each of thosesteps along the way.
SPEAKER_01 (14:39):
Yeah, makes sense.
Dig into that a little bit too,because I think when there's
some listeners we have that areprobably really well
experienced, have a lot ofeducation background, have
co-authored a series ofpublications.
There's a number of otherpeople, and I run into them all
the time in clinical research,and they've never really had a
chance to contribute to apublication previously.
or a peer-reviewed publicationor go through that process.
(15:01):
And I think it's a reallyrewarding process because it's
challenging, right?
It's a different level ofthinking.
And so when you unpackpublications, especially
peer-reviewed publications, whyare they so important to some
people?
And then some people don't seemto understand they even exist.
SPEAKER_00 (15:17):
So I think the peer-reviewed literature grew
out of a couple of differentobservations.
And one is that When we do ourown science, we tend to do these
little tweaks and we tend togive ourselves these little
allowances and exceptions thatmean we can believe our own
biases.
We believe our own hype.
And really, science only standsif I give you the recipe and
(15:37):
someone on the other side of theworld can follow it and get
pretty much the same results.
And so where peer-reviewedscience grew from is when
someone makes an observationabout a frog or a butterfly or a
flower or something like that.
It should be relativelyuniversal.
because if you're the onlyperson that can find it then
you're some kind of magician oryou're deluding yourself right
so the point is to contribute toa body of knowledge that we can
(16:00):
all benefit from even when theone person who it always works
for isn't in the room you knowbending spoons then then i think
we've contributed to somethingso the challenge though is it is
a slow process right it's a slowpainstaking process it has a lot
of rules, regulations,traditions.
And it can take a lot if yourprimary work is on product
development or marketing.
(16:22):
then that can be verychallenging.
If you're working in moretraditional pharmaceutical
sponsors, there's a ton ofprocess that has to go into
that.
You can't just write the thing.
It has to be vetted by 40 or 50people.
So it's a big undertaking.
But I think the benefits aregenerally legitimacy and
engaging with the community.
So if you're going to beengaging with clinicians,
(16:43):
they're going to want tointerrogate the methods.
They want to see that you'rebeing a good actor in the
system, right?
So...
there are plenty of examples.
I've come across everything fromstem cell transplants to, you
know, Theranos, you know, wherethey wouldn't show they're
working.
And so increasingly now that hasraised the bar where you have to
(17:05):
show your methods.
It has to be replicable and itcan't all just be proprietary.
It can't be in a black boxbecause otherwise you don't have
trust.
So on some level, It's abouttrust and creating an
environment where you can showthat your ideas are so strong
that they stand by themselvesand that people should commit to
trying your drug or trying yourproduct or deploying it.
And increasingly, I think whatwe're seeing is a tiered
(17:27):
approach.
So particularly in digitalhealth, what you see from people
like the Digital MedicineSociety is say, well, if you
have a small amount of evidence,let's do a pilot.
We're not going to give this to10,000 people.
until we have, say, two pivotalRCTs that prove that it works.
And yeah, that's kind of thestandard that you see for drugs
as well, clearly.
And yeah, we're very sensitiveto the notion that there's
(17:48):
conflicts of interest, forexample.
You know, if I make the drug orif I own IP or if I own a patent
on it, I'm very motivated to sayhow brilliant it is or to say,
well, this trial failed theprimary outcome, but if you
squint and I really do apost-hoc analysis, then actually
it turns out to be brilliant.
Okay, but ideally...
your peer review publicationwould have published a protocol
(18:08):
about a year in advance.
So we can test whether or notwhat you said you'd do is the
same as what you actually did.
So it's all kind of methods andprocesses that allow us to be
more certain of the claims thatpeople make in medicine and
beyond.
SPEAKER_01 (18:22):
I think this trust piece is really important,
right?
Because the, you know, scienceis hard enough, right?
Being able to go through, buildsomething, replicate it, and
then have other people look atyour data and interrogate it in
a very kind of iron sharpensiron way.
Make sure that what you'resaying, like you said, is
repeatable and enforceable.
I think that trust is so key.
(18:43):
And it's why I actually wouldencourage people, if you're in
clinical research and you'rethinking about something else to
do to expand your CV, expandyour career, one of the best
areas.
And actually one of the thingsthat sort of helped me a lot was
getting involved with smarterpeople that are doing
publications and gettinginvolved in contributing as a
co-author to those.
I'll never forget, Paul, like Ihad friends of ours, Dr.
(19:04):
Amir Kalali, Elisa Cascade, likethe two of them were actually in
a meeting and Amir gets a lot ofcredit for this.
He said, hey, John, you need todo publications.
And I literally was like, what'sa publication?
I didn't know.
It was back in like 2002, 2003era.
And he said, well, come on andwe're going to teach you.
I got to do a lot of legwork,which was really helpful, right?
And you should.
(19:24):
But I got to sort of get anearly sense of that process.
And for me, the coolest partwas, you know, you do this work
and then you wait like a year.
You never hear anything.
And then boom, it's publishedand you saw your name.
I mean, I was like number six onthere, but it was like, wow, we
did that.
Like we proved somethingmeaningful.
And I got to tell you that forme, So I love what you're
saying.
I'd encourage anybody to reallydo that.
(19:46):
If somebody is in pharma,someone's in a CRO, a supplier
company, and they want to dosomething with a publication,
what's an easy way they canstart?
What's something they could dothat's maybe not trying to get
the BMJ to publish my life'swork?
What's something they could dothat would get them into this
mode and just start doingsomething in publications?
UNKNOWN (20:05):
Yeah.
SPEAKER_00 (20:06):
So I think you're right.
It can be daunting.
I think a great place to startis letters to the editor, right?
If someone's written somethingand you have something to
contribute, generally editorsare very keen to have that
dialogue in their journals.
Be nice.
It's not your opportunity tolike throw shade on folks, but
to come with your ideas and say,you know, have the authors
considered this other point or,hey, this reminds me of
(20:26):
something from another fieldthat you may not have
considered, right?
So it's an opportunity to behelpful and useful.
I think the other potential issort of opinion pieces, you
know, so even if you don't havea ton of data, if you have
synthesized a whole bunch ofstuff that's going on in the
field and you have a particularview that you want to advance,
then I think, again, publishers,editors are very interested in
that.
(20:46):
But you're right, the best wayis to sort of collaborate with
other people that have done itbefore.
There are these authorshipguidelines called ICMJE that
basically state how much workyou have to do to be an author
on a paper.
So in the bad old days, it wouldbe everyone in the department
gets to be on the paper orwhoever's paying the bills gets
to be on the paper or whatever.
And now increasingly what we dois we say, well, everyone has to
(21:08):
make an intellectualcontribution, right?
So that means that when thepaper goes out, Each of you,
whether six authors or 20, areintellectually responsible for
the content.
And you know, if it makes apoint, you should be able to
defend it.
So that means that you as agroup have got some consensus on
a point.
Yeah, again, talking about thiscrystallizing what we really
think.
Writing it down really helpswith that.
(21:28):
For me personally, I'm often theperson that writes the title.
Most people read the title, afew people read the abstract,
and then a very small number ofpeople will read the whole paper
and go through the references.
So if you can grab people'sattention with the main point of
your title, or just get yournarrative talking points across
in the abstract, that goes along way to it.
So you could bring differentskills, whether that's writing,
statistical analysis, maybe evenjust the project manager, who
(21:51):
makes sure all the signaturescome to life, but you're
contributing intellectually.
There's a whole bunch ofdifferent roles that you can
play.
SPEAKER_01 (21:58):
One of the ones I really like is posters, right?
So if you go to a conference,we've done some, we did some
together actually a long timeago.
You'd go to a poster andessentially in a poster, there's
a conference, they are acceptingapplications.
You create your poster, you doyour research, you show your
graphs, you show your objectivesand what your results were.
You submit that and it's sort ofa really important but lighter
(22:21):
workload to a full peer-reviewedpublication, way to get in and
present what you've been workingon.
I did publish personally, I knowyou have too, a a lot of posters
because it was really goodpractice, but it was also a way
to get a simple idea that wasn'tas complex out the door and to
really engage the community withthat.
And so, yeah, I think it'sgreat.
SPEAKER_00 (22:38):
No, I think it's great.
I've just been doing somecoaching and mentoring actually
with an up-and-coming scientistat one of my clients.
They just presented at aconference and used a lot of the
tips and tricks that I'veaccumulated over the years.
For example, you know, havinghandouts of your poster because
you might meet people in acorridor and not at the poster
session.
You want to give it to them.
Having QR codes, having a callto action, but also engaging in
social media, right?
(22:59):
So LinkedIn hashtags areincreasingly becoming useful.
So if someone's attending ameeting, you know, the algorithm
seems to know this and sort ofshows you posters and content
from other people.
But one thing people sleep on alot is not uploading the poster
to somewhere like ResearchGateor Figshare so that after the
conference is over, that PDF iskind of there forever.
So, you know, I think there arelots of things you can do to
(23:21):
extend the shelf life of thosetypes of things and get a lot
more value out of them for sure.
SPEAKER_01 (23:25):
I think one of the tips for me is you and I are
co-authors on a work, but one ofthem we did was with the Nature,
the MPJ article.
That was so fun to do, theco-authors on that.
Just being able to meet and talkabout these topics, review our
data was awesome.
I'll never forget it.
It's almost two years old.
On a weekly basis, I have aGoogle tracker.
I get a hit that says it's beenreferenced, right?
(23:46):
And I go look at the attributionand I'm like, oh, and that
actually helps me kind of diginto it.
Somebody is also on this idea orsomeone's also curious about
inclusion in research orsomeone's also...
really passionate aboutdecentralizing a study and being
very measured about the pros andcons.
I found the best publicationsbecause people attribute that
publication, funny enough.
So for what it's worth, I thinkyou can go into Google Scholar,
(24:07):
you can track that.
It's a super powerful tool.
I get a lot of my reading fromthat because you're right.
People don't go on LinkedIn andpost, here's this publication
just read, you should check itout.
And I hope people do that more.
But in the interim, That's thesolution that's been working for
me.
SPEAKER_00 (24:21):
Yeah,
SPEAKER_01 (24:21):
no, I think
SPEAKER_00 (24:22):
it's a great way to find your people, find your
tribe, right?
SPEAKER_01 (24:24):
It is.
Yeah, it is.
And I mean, shifting gears alittle bit, the expert area that
I want our audience to thinkabout with you is scientific
communications, like all thatembodies so much of the good
work you've done and so much youmove forward.
The digital health angle,though, equally is important
because obviously you've been inthere since the early days.
You understand the model andyou've been a big proponent of
(24:44):
how to Make digital health verynormal, make it the standard.
So like, tell us, when does theword digital come out?
When is just everything we talkabout digital health become
health?
Is that any closer?
We used to say this like 10years ago.
And I still see digital healthlike the index on that word.
So is this more of the standard?
Is it becoming normal?
Is that word going to getdropped at some point?
SPEAKER_00 (25:05):
I think we're still pretty far away.
I think there was a big hypebubble during COVID, especially,
right, where we thought thateverything would be entirely
sort of app-based or digital.
When we sort of returned to thephysical world, we saw that snap
back.
But one of the challenges was wedidn't see the payment pathways
being put in.
So, for example, there's a greatapp if you have insomnia called
(25:27):
Sleepio, and it is approved byNICE in the NHS in England,
which means it's supposed to bereimbursed and freely available.
But no one will pay for it.
in the NHS.
And so you can't get this appthat works, that is
evidence-based, that has 20years of trials.
And so what that means is if yougo to the doctor and you say
you've got insomnia, if theyhaven't heard of the digital
tool, they'll probably give yousleeping tablets.
(25:49):
And those could be habit formingand those can have side effects,
right?
So I do think we still have aways to go.
It's just that thetransformation is taking longer
than we expect.
But the benefit would be once itis there, that's the new normal,
right?
That's the new standard.
So unfortunately, it's takinglonger than we think.
But I think it'll be once it'sinstalled, it'll be a lot more
permanent, a lot more consistentrather than previous systems.
SPEAKER_01 (26:10):
It's a measured response.
It's fair.
I hope you're wrong.
I hope it goes faster.
I would love
SPEAKER_00 (26:15):
to wake up tomorrow and all the fax machines in the
NHS have been destroyed and yougo to the doctor and they don't
give you the clipboard with thesame questions like, are you
still male?
How much do you weigh?
Is there any chance you could bepregnant?
And you're like, come on, guys.
You have my full body MRI scan.
You have my genome.
You have my electronic medicalrecords from 20 insurers.
Why are we doing this?
You still want to know my middlename?
What's going on?
(26:35):
We can do better.
SPEAKER_01 (26:35):
This is called doing the hard work.
That's what we do every day,right?
We're going to move this thing.
It's just going to take time.
Absolutely.
Persistence is what wins in ourindustry.
If you're in clinical research,and I hope you're hearing that
from Paul, persistence is theword you should just make on
your shirt.
SPEAKER_00 (26:52):
The slow boring of hard boards is how I've heard it
described.
SPEAKER_01 (26:57):
Before we move on from the digital health point,
when you think about digitalhealth and scientific
communications, we sort of heardeverything you talked about in
science communications and theimportance and value of that.
But if I'm in a digital healthcompany or I'm trying to get
something around digital healthmoved forward, How's the
intersection of SciComm help mydigital health move forward?
(27:17):
How should I at a digital healthcompany be thinking about
SciComm to actually researchbetter or publish my evidence
better?
SPEAKER_00 (27:25):
Yeah, no, that's a great question.
So what I always recommendpeople do is benchmark where
they are right now relative totheir competitors for their age
and stage.
So if you just startedyesterday, it's fine that you
don't have a paper in theLancet.
But if you've been going for 20years and you've got five
doctors and you haven'tpublished anything, that looks a
little suspect, right?
So it's about appropriatelycalibrating that.
You said earlier aboutconferences.
I think abstracts are a greatway of crystallizing and getting
(27:47):
you to be concise, right?
If you have to run a 300-wordabstract, guess what?
You're not going to fit in thewhole kitchen sink.
You've got to stick to the mainpoints.
And then, yeah, I think there'sa mixed diet of editorials,
opinion pieces, primary datapieces, and then re-analysis of
your data.
Because often if you've gotthousands of patients with a
condition, just the data thatyou're collecting routinely is
(28:07):
probably one of the richest datasources out there.
So either work on that with yourown data science teams or
partner with other academicswho'd be really keen to analyze
that data.
And yeah, you're essentiallyleaving breadcrumbs that says,
we show our methods, we do ourwork in the public spotlight,
and we engage with thecommunity.
SPEAKER_01 (28:23):
So expert area, SciComm?
Second expert area, digitalhealth.
Third expert area, Star Wars.
Yes.
Can I just ask, and again, thisis where everybody just stops
listening and watching and moveson with their career, and we
just keep talking, but in allseriousness...
What is it about Star Wars thatwe love it so much and we can
(28:44):
not have talked to each otherfor six months, get on the phone
and start nerding out about StarWars?
What is it?
SPEAKER_00 (28:49):
So I know for me, it's very personal.
Some of my earliest memories aregoing around a supermarket and
there being a toy section.
And I didn't want to go aroundthe supermarket with my mom.
And I'd be like, can I go lookat the toys and just sit there
looking at like Jabba's Palaceand, you know, AT-ATs and
whatever.
But also when I was a kid, Ilived in Switzerland for a few
years and I didn't speak French.
So the TV made no sense.
And all I had was thesevideotapes.
(29:11):
And so, you know, the originaltrilogy were like in the VCR all
the time.
And so, you know, I had the toysand I had the movies and stuff.
And so it was just big presencein my life.
And I think what's beeninteresting is I feel like
liking Star Wars was arelatively unusual niche thing
about, you know, when I was akid.
I would play the video games,the computer games, X-Wing,
(29:32):
especially these simulatorswhere, you know, you were kind
of managing the shields and allthis kind of stuff were really
great.
And then sometime around thelate 90s, early 2000s, suddenly
everyone was into Star Wars,right?
There's like Darth Vaderbreakdancing and Yoda t-shirts
and stuff.
And I'm like, well, this is coolbecause there's more stuff,
there's more content.
But there's also a little bit oflike, huh, now it's kind of
(29:53):
ubiquitous.
Maybe it doesn't feel as specialanymore, right?
And yeah, so it's gone throughdifferent evolutions for me.
But, you know, you can see I'mold school, right?
Just the bits and pieces hereof, you know, the Millennium
Falcon.
And I've got a TIE bomber overhere.
I've got, you can't see it.
This is Darth Vader taking hisat-at for a walk is my
bookshelf.
And of course, I've just enjoyedAndor, which has been a
(30:14):
tremendous experience and, youknow, restored my faith in the
Force.
SPEAKER_01 (30:18):
Yeah, no spoilers here.
No spoilers.
No spoilers here if you'rewatching.
Yeah, it's funny.
I kind of think it's a lot likea MacBook.
Do you remember?
I don't know if you did thistoo.
I got a MacBook like reallyearly on and I would walk into
the office and there'd be abunch of PCs and people like,
what are you doing?
And I kind of felt like I was inthe special cool nerd club of
nerds that liked tech and kindof a Mac kind of got me.
(30:40):
Like I was just really, for me,it was really like business and
art together.
Yes.
UNKNOWN (30:45):
Yeah.
SPEAKER_01 (30:46):
Yeah, still have mine.
Like my original one with all mygoofy stickers is still in
there.
And then fast forward now, I wasactually out and somebody, I
said, well, are you going to geta Mac or PC?
And they looked at me like, I'mgetting a Mac.
Almost like, why would I get aPC?
And that, when you said that,that's kind of the inflection
point for me.
But listen, Star Wars for me wasthe same.
It was Return of the Jedi.
Big deal in my house.
I swear.
(31:06):
I think I had every speeder bikeI could get my hands on or build
with a Lego set.
And for me, it was, this is whatwe watched, right?
And VHSs, and I watched thiswith my family, and TV wasn't as
cool back then.
This is what we did.
And just...
Again, for you only, Paul.
And it's so funny because Ididn't set you up or pay you
money to talk about VHSs, butsomething to show you.
(31:26):
So I don't know if you can seethis.
Oh, yeah, yeah, yeah.
So one of the things I didduring COVID was super nerdy,
was doing collectibles that aregraded.
And one of the things I foundwas old sealed VHSs in like
pristine condition, but like theoriginal, original version.
And I don't want to go all intoit, but there's ways to figure
out that this was like a firstor second edition ever printed.
(31:47):
So I have some of those.
And so this is the original StarWars VHS.
Right.
Things like this where, talkingabout sci-coms, right, where
you're talking about how do Ipublish and tell people about my
(32:08):
work so they'll be connected andunderstand me and talk to me.
Star Wars was like the dooropener, right?
It was where all the people thatkind of were in the clubs that I
wanted to be a part of andwanted to recognize me really
opened up.
So I think that was what wasimpactful for me.
SPEAKER_00 (32:21):
Absolutely.
I mean, I've had a couple ofPoints in my career where it's
came back.
So I've been working in ALS for22 years, as you know.
So ALS, terrible disease, 18months survival.
I have tracked the data of orinteracted with or participated
with about 12,000 humans whohave died as a result of ALS.
And particularly when I wastraining and particularly when I
was working so hard every day,in my head, it was like the
(32:44):
Rebel Alliance versus the DeathStar, right?
I see these populations.
I would get an email every weekof who's died.
drip, drip, drip, drip, drip ofthis.
And it was incredibly difficult.
And it was one of the ways thatI kept that fire going within me
of going like, I'm going tospend the next 20 years and I
might make a screw on the, youknow, photon torpedo that
becomes the thing that goes downthe trench.
(33:05):
We're like, there are no heroesin research as such, right?
We're all just making littlescrews and bolts and things on
it.
But that was a useful frame.
So that was one aspect to it.
And then I think another aspectthat came through was just, you
know, appreciating great art,like appreciating the great
shows that have been recently indifferent riffs on it has been
(33:27):
really great.
So it's something that I canshare with my children.
They love it.
And yeah, it's really fun.
SPEAKER_01 (33:32):
Paul, if someone wants to connect with you, they
want to dig in on science comms.
They just want to be connectedwith you.
They have some work they want togive you.
How do they get ahold of you?
UNKNOWN (33:39):
Yeah.
SPEAKER_00 (33:40):
Best way to find me is on LinkedIn.
LinkedIn is like my operatingsystem at this point.
So it's just Paul Wicks and lookfor this guy.
And yeah, I'd love to talk toyou.
SPEAKER_01 (33:48):
And if you watch his TED Talk and you comment on
there that he looks exactly thesame as he does right now, you
get a bonus point.
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