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Hello and welcome to the Digital Health
Hackers podcast where we go through people
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in the healthcare industry and especially
the health IT industry with significant
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contributions. And today we have Luis Falcón with
us today. He is a doctor by profession and then
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one of the main contributors to the GNU
Health Foundation and a big advocate of
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social medicine. So hi Luis, nice to have
you here today. - Thank you for having me.
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- So Luis, how did you, you know, what's
your story? How did you get started? - So
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GNU Health project starts pretty much in the
early 2000s, 2006 in the north of Argentina.
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It originally was a project for rural medicine
where we tried to provide some technology for
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rural doctors and health professionals that
were living on these underprivileged areas.
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Then Richard Stallman adopted the project and made
it an official GNU project. That's why the name of
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GNU Health. And yeah, then, you know, different
people have been contributing to not only a more
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open ecosystem of health where you
have things related to, of course,
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social medicine, but also you have things
related to genetics and genomics and
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laboratory management and yeah, personal
health care and mobile applications
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and so on. So that's, that's in a nutshell
what we've been doing for this over 15 years now.
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- Amazing. So how many of you are actually the
core contributors? - Yeah, well, it's hard to know
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because yeah, if we just look at the universities
and the people working in different universities
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and different academic institutions, there are
a lot of people. So it's kind of a decentralized
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project, right? It's more of a confederation
of people and institutions around the globe.
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But we do have around 15 people, per se, that
work in different areas. So you have people
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working on translations, you have people working
on documentation. And then, of course, in when I
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say working, it's pretty much leading those areas,
right? And then, yeah, now, for example, we have
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guys working on making sure that free hardware,
open hardware, connects to GNU Health by different
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means. So, yeah, it's, I would say it's a pretty
large community at this point of multi-diverse
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backgrounds. - That's really interesting.
So GNU Health, I think, when you started it,
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you were a practicing doctor and you are
just doing this on the side? - Yeah, well,
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the very first step we were at these rural areas
of Argentina, they were public schools, right? So
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we were providing GNU Debian distributions
to put on the libraries. So, you know,
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the kids will play with math and we will talk to
the teachers and, you know, kind of approach them
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to technology and provide some technology for them
using free software. But then I noticed that these
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kids needed more than just technology, you know,
they needed the very basis of dignity, which is
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proper shoes and proper clothing and nutrition
and, you know, the basic things that we need
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to be healthy and have a dignity in our lives. And
that was ringing the bell, you know, I said, well,
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let's, let's, you know, reflect a bit and go back
a bit to the roots of what these kids need at this
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point in time. And that's where I said, we will
keep on providing technology for the libraries,
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but let's focus on social medicine and let's focus
on the quality of life of these kids. Not just at
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the school, but also on their daily activities,
you know, and that's, that's what triggered the,
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the thing of integrating primary care and
social medicine into technology, you know, and
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I think it's a kind of a unique project in that
sense because when we look to the most electronic
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records, many or most of them are focused on
disease, you know, they are, yeah, you know,
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how do you call this whatever, hepatitis
or cholera or whatever. But our approach
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was different, our approach was how can we, you
know, prevent people from getting sick, you know,
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and I think that that's pretty much primary care
and working in that sense and then giving the
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health professionals the right tools from the
reporting point of view, from the demographics
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point of view, so they can work on that layer and
then, yeah, build up with a strong foundation,
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you know, that that was my idea and it's still
my idea and I think that yeah, I come from a
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genetics background, so that's in the genome,
right, so that that's in the DNA of Gnu Health,
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that's (the main core. Yes, of course, then you
can do all sorts of things related to health care,
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but I strongly believe that if we don't have
social medicine as a foundation, it's very hard
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to build something sustainable for our societies.
So, yeah, that was what actually triggered me to
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say let's put social medicine into technology.
- That's amazing, actually, that's, you know,
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the usual traditional approach of medicine is
not really health care, it's sickness care,
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once like people come into the system and they're
sick, they do whatever they can to treat them,
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but I think health care and social medicine
as a whole is probably the place where there
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is the hugest return on investment if you
put a dollar in prevention versus cure,
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right? - Absolutely, I fully agree with you.
I actually call it the system of disease,
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right? What we are living today in the western
society, or most countries in western society,
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they live in the system of disease, and that's
definitely unsustainable, and we see it in
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countries like the US, it's going to collapse
because the health care system cannot deal with
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so many epidemics of poverty, of poverty-related
diseases like obesity, homeless, and so many
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other things that we see in the so-called
developed countries, right? And we do have
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the moral obligation to do something about it, and
I think that's what we need to do. The obligation
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to actually work on that level,
on that foundation of society,
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because it will make things much easier for all
of us. I mean, you are also a physician, right?
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And I think that it's heartbreaking to see that
the basics of the health care is not being taken
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care of, and the pharmaceuticals are just making
a lot of money from working on that system of
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disease that we were talking. I think that we need
a shift on the paradigm, and hopefully New Health
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will provide just a tiny bit of that shift.
- Sure, I think this is, some of the times,
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it's not even the doctors, you know, it's
not that they don't want to do this, it's
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that the tools are not ready for them to really
provide social health and look at the patient
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from a holistic perspective, right? And so,
what do you think? Do you think GNU Health
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and the contribution you made in Argentina, what
did you first start tracking? How did that change
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the situation there? - Yeah, well, we've seen
it in different countries. As a matter of fact,
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GNU Health was used in Argentina as a real-time
observer for, observatory for the COVID pandemic.
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And we need data. That's key, right? One of the
things that they've been doing, it's tracking
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and preventing human papillomavirus infections,
right? That we know that they are intimate, linked
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to a cervix cancer. And the way they do it is they
work with ladies in rural areas, so now they have
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a self-test that they can do. So, they can do a
self-test that they can do at home. So, they don't
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have this problem of going there and all these
social stigmas that still exist in many areas
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of the world. And that is having a very drastic
and positive impact in these ladies, you know.
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And by preventing, doing a primary and secondary
prevention, activities and measures, and that is
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actually reducing the prevalence of cancer. And
that is beautiful. And that's one of the very
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best examples that we can see when
you put people before patients,
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when you treat the healthy communities before
actually they get sick, you know. Because, yes,
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that's doing things on the, not the reactive
way of doing things as we are doing now, but
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from the proactive point of view. And of course,
I mean, then when you look at the socioeconomic
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stubs and functionality on new health, and when
you start looking at things like education level,
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housing conditions, where they have sewers, where
they have heating, where they have, you know,
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what's the overcrowding conditions on many places
that would lead you to contagious diseases like
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tuberculosis and things like this, you know. And,
you know, working with the nurses, working with
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the social workers, I'm really excited about, you
know, all these changes that we are being able to
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provide to the public health communities with the
new health. It's really amazing. And to see how,
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you know, I think that things come naturally,
right? And when you see why new health is being
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successful and the level of adoption is having,
it's because it's a natural thing to evolve,
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I think, in healthcare, you know. And I'm very
proud of that. I'm very proud of the community
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in that sense. - Amazing. That's, you know,
a real change happening because of software.
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And I wanted to ask you a question regarding
separating the use cases from the actual platform,
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right? So, there are hundreds of different use
cases in how certain things can be applied. So,
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for example, HPV in preventing cancer or tracking
the sewage pipelines and occurrences. So,
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what's your opinion on how GNU health should be
designed or, you know, how do you separate out
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the use cases that are local in nature versus
GNU health as a platform, which is more like,
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you know, everybody will be having the same code
base, right? So, how do you separate these two
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things out? - Well, if I understood you right, we
need to have multidisciplinary teams in terms of,
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for example, when we talk about the sewers or when
we talk about the quality of water that people get
00:15:02
at home, you know, checking, for example, the
levels of arsenic or whatever. GNU health has
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the laboratory system, which not only applies
for humans, but also for non-human animals and
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sometimes just to check the quality of water. But
you need somebody to do it, you know, I get quite
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frustrated when I see people using GNU health
and not putting this demographic part into it,
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you know, like they sometimes they just jump into
the clinical practice, you know, we need to have,
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I think that, for example, the best, I would
say that the best implementations are when the
00:15:55
public institutions are into it, meaning when you
put it into a municipality, it's a joint effort,
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you know, so you have the academic institutions,
then you have the mayor, then you have the social
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workers and that multidisciplinary team is what
makes GNU health meaningful, you know, that's what
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brings meaning to the project itself. So, yes, we
provide the technology, but technology by itself
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is nothing if you don't have this human factor
of people knowing also your community is key,
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you know, making sure that you reach out those
people that, as I said before, you know, with the
00:16:54
HPV prevention, social workers would go to these
ladies' houses instead of the lady coming to the
00:17:03
health institution, and those are key components.
Checking the levels of arsenic in water, the same,
00:17:12
I mean, and so there are so many social diseases
that can be preventable by doing these things,
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you know, so how we articulate them, yes, of
course, technology is a very important piece, but
00:17:32
we need the people to actually articulate it, and
then, yes, of course, we need to use standards, we
00:17:39
need to use things that, no matter where you are
in the world, somebody can actually reach and see
00:17:46
through open science what's going on in different
places of our beloved earth, right. - Got it. So,
00:17:54
I think, like, healthcare is global, and most of
these things are global, so designing it right for
00:18:03
one particular demographic then extends naturally
to almost all other demographics. - Yeah, I mean,
00:18:15
look at the tuberculosis key, right, so we have
TB pretty much all over the world, and I would
00:18:23
say it's one of these paradigms of social disease,
right, because one-third of the global population
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is living with the mycobacterium, but those that
really get sick are the poor in the end, you know,
00:18:43
are the ones that don't have proper nutrition, are
the ones that don't have proper housings, are the
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ones that live on the streets, are homeless,
or on overcrowding conditions, those are the
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ones who actually get the clinical TB, and it's a
pity, and, yeah, that exists, as I said, you know,
00:19:04
it exists in India, it exists in New York, it
exists in Bangladesh, it exists in South Africa,
00:19:10
it exists all over, and in the end, it's the
poor, it's the underprivileged that actually
00:19:20
suffers the most from it. Arsenic, the same, when
you look at the type of soil that we have in many
00:19:27
areas in South America, in Asia, in Bangladesh, or
wherever, they are rich in arsenic, and the people
00:19:37
drink that water, and then they get very sick, and
there are ways of actually preventing those social
00:19:45
diseases, but we have to put the means there, and
it's a pity that that doesn't show on the news.
00:19:55
The news are always showing the reactive thing,
you know, or whatever pharmaceutical invented, and
00:20:03
it's a pity. I think that there is so much work to
do on the prevention level, and, yeah, putting the
00:20:14
resources into the people, and not only into
a few very powerful corporations. - Amazing,
00:20:24
yeah, that's like, I think tuberculosis and
malaria combined probably killed a lot more
00:20:29
people than COVID ever did, but we see what we
can, you know, it's something that's obvious,
00:20:38
and we fail to see the background that's actually
causing a lot of these issues. - Yeah, it's,
00:20:52
you see, I don't know whether you remember the
Ebola crisis in some Western Africa countries.
00:21:05
Ebola has been there for many, many years, but it
was only when the rich white men got infected that
00:21:15
they decided to invent and work into some vaccine
or something for Ebola, and until that happened,
00:21:27
thousands, if not millions of people are dying
in many countries in Africa continent because of
00:21:35
social diseases, and one, of course, is, you know,
TB, you mentioned malaria, of course, Ebola, but,
00:21:43
of course, if it doesn't touch the rich white
men, that won't go into the media, and that is
00:21:52
very sad, you know, and we as a society have to
change that. - So, Luis, what is your, you know,
00:22:01
what are your future plans? What does the future
of GNU Health and your career look like? - Well,
00:22:15
one thing, one of the things that we are doing at
this point, it's been a couple of years already
00:22:21
that we've been working on it, it's reaching out
to the person, to the individual, and integrating
00:22:31
the individual into the system of health,
and my GNU Health, it's an application that
00:22:37
can be installed on desktop, and now we are also
providing it into mobile devices, so the person
00:22:48
becomes an active actor in the system of health.
I think that that's very important, because,
00:22:57
you know, you can talk to your nurse, you can talk
to your psychologist, you can talk to your social
00:23:02
worker or doctor, and, yeah, you know, you can
check your blood pressure from home, you can check
00:23:10
your blood sugar levels from home, and even your
emotional status and your psychological status,
00:23:23
which is also very important today, you know.
Mental health is the only thing that we need to,
00:23:29
and that's my dog, by the way, so that we need
to work into it, it's social and mental health,
00:23:43
which is one of the things that have been kind
of left aside, you know, and by providing these
00:23:52
tools to the individual, I think that we are
making them an active actor of the system of
00:24:02
health, so that's one of the things that we are
currently working on, and also I think that the
00:24:11
GNU Health Foundation itself, making sure that
we can integrate not just one single big, large
00:24:23
hospital, but thousands of primary care centers
and clinics and whatever around the world, where
00:24:33
we can actually have good quality data that will
integrate not only the molecular basis of disease,
00:24:43
but also how the environment affects us as human
beings, and one of those is what we call the
00:24:55
Global Exposome Project. We have this project that
is called the Global Exposome, which deals exactly
00:25:03
with that, you know, how, you know, what we eat,
how we sleep, where we work, affect our health in
00:25:12
one or another way, and for that we need to have
a lot of data, you know, things like epigenetics,
00:25:22
cancer, autoimmune disease, are complex,
multi-factorial disorders that we need to better
00:25:33
tackle them, and I think that the environment is
one key factor that is not being addressed enough
00:25:44
or properly until now. So those are the things
that we are integrating into this ecosystem that
00:25:55
I was mentioning. - Okay, so the patient health
record and empowering the patients a lot more,
00:26:02
research based on the data that you are already
collecting in GNU Health, interface between
00:26:08
different hospitals and different systems, and
I am just curious, like how do you, if multiple
00:26:14
systems are running GNU Health, how do they
interact with each other? Do you all just need
00:26:19
to have one single database or is there a protocol
to share information between two different GNU
00:26:26
Health systems? - Right, so we have what we
call Thalamus. Thalamus is a message server
00:26:42
that allows you to interact not only between GNU
Health systems, for example, my GNU Health which
00:26:52
uses a completely different technology than
the hospital management information system,
00:26:57
can be plugged into the GNU Health Federation
itself by means of Thalamus. So you can actually
00:27:07
create federations of federations, what would
be kind of like a confederation of systems,
00:27:16
right? And by providing these APIs, I think
that is the best way of approaching this
00:27:31
federated, distributed model, because each
system is autonomous, meaning you decide what
00:27:41
are the things that you want to share, what
things you want to remain private within your
00:27:51
scope. For example, in the hospital management
system, human resources might be something that
00:28:00
you don't want to share, because you might say,
well, it doesn't really provide much information,
00:28:06
so you say, well, these models won't be part of
the federation. And the same as in the personal
00:28:14
health record, you might say, or you might
want to keep private some stuff that, you know,
00:28:20
has to do with your psychological status or
mental health or whatever. Whatever you think
00:28:26
that you don't want to share, you are most welcome
to actually just keep it private. But these sort
00:28:36
of APIs that we provide allow you to create very
large databases, of course, keeping in mind the
00:28:50
privacy of the person, right? You can actually
send stuff in an anonymous way, or yes, you know,
00:28:57
you really have to make sure that patient
privacy will always remain at the highest,
00:29:06
right? But going back to cancer research or
neurological disorders research, the only
00:29:21
way we can actually find correlations between
the genome and the actual physical condition or
00:29:33
disorder is by having these very large databases.
And that will include the molecular basis,
00:29:42
your genome and your DNA or whatever,
and also your lifestyle and environment
00:29:48
and all the things that will might have also an
impact on your health and or in the expressions
00:29:56
of these genes. Yeah, so like the HPO codes and
human phenotypes, and I think there's a lot of
00:30:06
interesting protocols, phenopackets, I think is
one of them. But it's really interesting. - So,
00:30:11
Thalamus, how does it compare to, say,
existing standards like HL7v2 or FHIR?
00:30:18
Is it based on these or is it its own protocol? -
Yeah, so basically, Thalamus is a message server.
00:30:33
It's not a message standard by itself, like HL7.
You can, you know, the way that you want to encode
00:30:44
that packet or that packet that you are sending
over, it's up to you. What we make sure with
00:30:52
Thalamus is that the required party has enough
rights to actually, you know, read, write or
00:31:00
whatever operation wants to do on the other side.
And then the packaging itself, it's up to you.
00:31:11
And you brought up something very important,
which is HL7. I think that we need standards,
00:31:18
we really need, and HL7 FHIR, I think that
it's a very nice approach to it because, yeah,
00:31:30
it's open, you know, it's clearer than version
3 and version 2 that were a bit more complex.
00:31:41
And I think that the EU is actually now, the
European Union is actually embracing HL7 FHIR,
00:31:52
and that's very good news. We do need standards.
For example, in Thalamus, we use XML for many,
00:32:02
many basic resources, and it works very well. So
in the end, it's no matter which standard you use,
00:32:19
as long as it's open, we can adapt it and we can
send it. The problem is when we cannot access
00:32:27
those messages, you know, that's where the problem
comes. That's where, that's why open science
00:32:37
and free software is so important in healthcare,
because we don't have to be reversing engineering
00:32:47
things to get the message. It's something that
it should be open, it should be accessible
00:32:57
for the advancement of society in the end, you
know, and I think that the inclusion in FOSDEM,
00:33:07
I'll be giving a talk about GNU Health and
the inclusion of free software in the European
00:33:13
community next week, I think, yeah, in FOSDEM,
because I think that the public administration
00:33:24
must embrace public standards, must embrace free
software, both in the public administration and
00:33:35
more concrete on the healthcare sector, you know,
it's key. And if you see what's going on today,
00:33:48
most systems are private in the healthcare
arena, you know, and those are black boxes,
00:33:56
we don't know what's going on there. Then they
say, oh yeah, well, we use this standard, yeah,
00:34:03
but your system is closed and we don't
know what's going on behind the scenes,
00:34:08
you know, when you generate a prescription,
for example. Oh no, because it gets printed,
00:34:13
yeah, but what happened between when I hit
enter and when the document got printed,
00:34:19
I don't know what's going on behind the scenes,
and that's where free software should show up,
00:34:25
and that's where our public representative must
adopt free software in the public administration
00:34:38
and more specifically in the healthcare sector.
- Absolutely, I agree, and I think having that
00:34:48
openness on at least, you know, what's going
on, having the source code to look, okay,
00:34:53
that's what's going on, makes a huge difference
and it even speeds up innovation, I would say,
00:34:58
because people can then fork it, do what they
like with it and meet their own use cases. So I
00:35:04
will definitely be looking forward to your talk
at FOSDEM, maybe if you have a link, you know,
00:35:09
you can also, we'll put it down in the description
for the audience to check that out. So anything
00:35:15
else you want to tell the audience, Luis, before
we end the podcast? - No, I just want to take this
00:35:29
opportunity to invite you, those that are going
to be in Brussels, FOSDEM in a couple of weeks,
00:35:37
to join us, we'll have a stand there, so
you can ask us any questions you might have,
00:35:45
both for your health centre or for your country.
We need to speak up to our public representatives,
00:35:55
and no matter where you are in the world, just
go there, ask them, and it doesn't matter,
00:36:00
it doesn't have to be GNU Health, I don't really
care, I mean, in the end, what is important is
00:36:05
that the Free Software Foundation has, Europe has
this campaign called public money, public code,
00:36:15
right? It's our tax money, it's something that
it has to come back to us somehow, and we cannot
00:36:21
be putting our tax money into large corporations
that they don't really care much about our health,
00:36:30
but they'll forget. So invest in free software
projects, no matter which one they are,
00:36:37
they are always going to be good for our
society, and if you go to FOSDEM, I will
00:36:43
be looking forward to seeing you there, and thank
you for having me here, it's been great sharing
00:36:49
this time with you. - Definitely, Luis, I think
really great points, I just hope that the video
00:36:55
was a little better, but I think I'll do something
in the edit (*he didn't do anything), and again,
00:37:01
really good to have you here,
thank you for taking the time.
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