openSUSE Conference 2019 – Building large health networks GNU Health Federation and openSUSE

openSUSE Conference 2019 - Building large health networks GNU Health Federation and openSUSE

good afternoon everybody anyone from the care industry okay we have one – good well we're going to talk anybody knows about the new health at all great so today we were just going to go over a quick review of what the project is some notable implementations and the philosophy of course behind the new health project so about our project it's first and foremost a social project okay so it has technology behind it of course but we use technology just as a tool we really need to provide freedom and equity in healthcare that's that's the goal of the new Health Project so technology is very important but it's just a tool okay this is very important because most of us here are either computer scientists or something related to that you know and it's it's very good to work with programming but we need to have a goal at the end of the day to know what we are doing this is part of the team some of us are here already and the new solid area is the NGO that serves as an umbrella for the new health project okay for the project to be free we need to rely on free technology all of this technology that we have here this components are free as in freedom right at the moment of if any of these guys would become non free the whole project will collapse so it's very important that we choose the right components when we make this type of large community managed community-based projects right we used to have MongoDB MongoDB is no longer because of the issues that they had with the licensing and so on so now we use all poster space balls for the transactional part and the analytic operations so it's a new health is pretty much an ecosystem it works with different components and this is the main functionality that we have we always said that we want people before patients right so we work before on the demographics on on healthy population so we know the socioeconomic status we know our health institutions our health providers and so on domiciliary units what's the status of those houses how many people live in those houses and so on do they have electricity we have sewers and so after we have done that and again here we don't have any patients yet we have people we move to the typical electronic medical record that's where in hospital management system that's where you know you have the patients you have the doctors you have the interactions you have the labs medical evaluations hospitalizations and so on third part would be the ERP okay that's that's where we take care of the health institution itself okay that's where we have finances we have stock management we have pharmacies and so on Human Resources the limbs and finally we make sense of all the data that we've been collecting through this transactional part before so here is where you know the Ministry of Health they did the management of the health institutions we'll be taking care of demographics epidemiology and so on that's those are the four main areas of new health and different technology is going to be being different radius within this ecosystem we have pretty much the six areas here new health this is the what I just talked about you know the hospital management information information system then we have different ways of packaging and providing it for example one of them is embedded where we use single ball devices recipes and so on we have the new Health Federation that I will talk today pretty much about that this is an ongoing project for mobile device and just survey one we're having some talks overnight we were saying hey you know what's good that we actually didn't do anything what's on Android because of what we've seen not only because of that I already have doubts because the operating system itself is not free so we don't know what's really going on behind the scenes and here we are talking about sensible data medical data and so on so anyone if anyone is into plasma mobile or whatever please let me know because I would really get like to get in touch with you and see how we can derive this part into plasma mobile laboratory information system these are a set of modules for that and no health bioinformatics has to do with genomics and genetics and Empire informatics in general more into the research these are just some screenshots of different modules from imaging to reporting to college or pathology IVs person or patient control center and so on so different different people different organizations will be using one or more of these modules it's it's modular meaning that depending on what is the needs of my institution I will install one two or whatever modules are good need for for running it so now let's get a little bit into the Federation because it's you know health is very focus on public health system okay we we we are convinced that health it's a non-negotiable human right so we have to work in the idea of public health that doesn't mean that if you have a private hospital you cannot install it of course you can but my goal is that everybody no matter where you are on what is your socioeconomic status should be able to benefit from health informatics so what what is the idea behind the Federation well we have nodes okay each of these icon represents a node and a node it's autonomous they don't need the network to work fully functional its heterogeneous they can use different technologies but yet they can communicate to each other and of course it must be accessible insecure in order to do that we create this sort of infrastructure where we have all these nodes those were the ones that we just saw on the previous slide then we have a message and a knows authentication server we call it thalamus and at the end of it we have the health information system that's also a person master index that's where you know I can go and see what's the demographics and that person on whatever and again these guys can work autonomously but if you want you can say I want this specific model to be part of the new health Federation and at that moment you will start sharing information back and forth with the other federating Federation nodes difficult problems need to be solved in an easy matter if you want to scale if you want to have something where simplicity is the most important part of this because in healthcare things tend to grow exponentially if you have 2 3 5 10 100 hospitals in your region or in your country you have to make sure that all that information is flowing nicely back and forth within the Federation and the other participating nodes are not going to be generating collisions and so on so one of the things that I did was creating the concept of book of life the book of life is made of pages of life and each page of life has its own categories so for example you can create a social page of life which can also be part of the social type from here you have different events like social exclusion the lifestyle stress whatever you know I mean in the medical part we have a type of page medical and then you will have whether you had an encounter where you have a genetic testing or so in this way you have a simple system to organize all the events that went through your life they don't need to be necessarily medical you can have biographical type of pages while you were born you were married or whatever and and in it you will be also able to be read sequentially just as a book or plaque right so if we do that now we have a system of Health instead of a system of disease that that's what in the Western countries we also used to as a physician I see people that comes sick and should be the other way around or or at least we should aim as positions to try to see as many healthy people as possible and prevent those healthy people to be sick or to get sick but you know unfortunately it doesn't work like that the system today in the Western countries is more into the system of disease you try to kill somebody because that person got sick and most of the time that person got sick because you didn't take the preventative measure to keep that person healthy so having these now you have multiple health professionals working in parallel not only on the biological part but also on the social psychological part of it and this transdisciplinary approach to health is going to be way more richer than the one that we are used to nowadays so how do we build those large networks here for example we put a case of new health in the context of cancer research here we have one of the genes Braga one and you know this case is responsible for for breast and ovarian cancer and type of of ailments and enough if you can see in this slide you have over 40 different natural variations or variants of these specific genes so defining amino acid changed the structure of the protein making it not very functional and in many cases we know what is the implication of that specific natural variant okay literature say well if you have this specific natural button you have this chances of you know having breast cancer somewhere around all your life but in many other cases we don't know what is the clinical significance of the Natural Balance in the only way today of knowing it is by having a very large and in statistics right so the more people that we have with that specific variant we are going to be able to infer right what would be the clinical significance of that that until today is a noun that is one of that is one of the beauties of having this federated model so do you aggregate a lot of data from a lot of different places and now not only we are going to be basing ourselves on the molecular basis of health or disease so we are not just going to have this amino acid change we are going to also include family history we are going to include lifestyle and other factors that are going to influence you know whether you are going to express at the end of the day that this is or not so here is an example of all the things that we are going to have on one specific page of life of that person right and and and this is where you get the date of on the new health hospital management information system and you also are going to have the representation of all the data not just from the hospital management information system now we are seeing a JSON oriented representation of that it's machine readable but it's also human readable anybody can pretty much read what's going on here okay with this specific person now one one of the big problems that we face today in healthcare and public administration in general it's the concept of silo silo is something that is pretty much closed right so many health institutions they have their own databases by they don't talk to each other I always put the pretty much the same example on Spain if somebody comes to Canary Islands from Barcelona or Madrid I have to start all over the clinical history of that person because different autonomies don't talk to each other in the healthcare system okay so this is what we have we have hospitals and they are closed they are silos this guy doesn't talk to this guy and if somebody comes to this hospital today in tomorrow goes to this hospital he has to start all over from not only he or her but the health professional and whoever works in the Public Health Administration or as a as a health professional you know that is very limited at the time that you have per patient so you pretty much have six seven minute at most so from those six seven minutes you have to spend five of them taking the clinical history you are in trouble so what do we propose well I propose this sort of federated model where again each note so this will be notes are independent yet they can share the information the Free Software Foundation Europe came with that campaign of public money public code that we fully endorse and I mean it's it's it's common sense we cannot have a public health system with a private health system it just doesn't work like that if I have a computer system that is closed cannot by definition be run on the public health system it just doesn't make sense well it doesn't make sense but that is the reality today pretty much I would say in 95% 99% of the cases most hospitals malls health system running proprietary hardware and software and that is not good that is not good at all we we you have to think of black boxes where you are putting your medical information and you don't know where that medical information is going who is actually going to be benefitting from the data that is coming from you as a person in this case as a patient so it's morally wrong to use software that is not free in the public health set for many reasons it's not just a matter of money I mean there are so many other things that had to do with you know your data and and empowerment of the community so hey you know we are in European elections now we should send this slide to all our politicians and say what do you think about it you know what would it take for you to go this way those are the things that we as a community should do as I said before at the beginning you know this is not just technical there is so many other philosophical things to put on top of the table and talk to you know our politicians and say hey guy you cannot run private software here it's not just because it has Springs it because it's in model so quickly the relationship with openSUSE and the new health here we have Excel he didn't bring that suit today he brought the mozilla one which is probably more appropriate for the ford event you know it's been years already where he is working and in packaging a new health for poor opensuse and documenting EDT again it's a large project so it's it's a lot of war behind it so it's good to have somebody in different a new linux distros that work on on packages although you know which a brand was talking before packaging a large system with multiple components as new health is not always that trivial you know so we also provide the panel installation for whatever operating system you want to use so we want to use openSUSE you can just ran the panel installation and have it you know the file system hierarchy where the files are and other things that role is harder to encapsulate it in a package we all know this one so we can just pass it which is one or the other and also you can always switch to half you know professional support if you have a large institution or review and have the people on site that wants to maintain or support installation of new health you can always go for enterprise settings are things so when we were talking about the project embedded new health and Bella project we are working today with one of the devices is Arduino and open source has been very nice to us also by sponsoring you know the new health cone and the Kiwi so this part of the reason I'm here today so thank you so we we have a hub this this is pretty much a demo server where people just can log-in no matter where you are in the world and play around with your instance and your nodes and see if it is actually shaping up the way that that you need all you need to do more customizations or whatever this is in yet in Germany say rapping in ranks also openSUSE lip and finally let me just go through some projects around the globe so we go from very small very small but we go from small clinics this is in the vein poorest in Cameroon where you know they have all disability solar panels and the installation running there two very large implementations All India Institute of Medical Science is the largest hospital in Asia it's it's huge so it doesn't really make much of a difference of course in the implementation it does but the functionality of a health institution is pretty much the same you know you have stock management you have people you have human resources you have par masses you have flames then you can have many more tests on aims that in that we were seeing before on this one but at the end and you know you have people you have health professionals you have labs and you try to do the best for your community working with WH o world health organization this is poor Bahia district hospital again using some of the standards the WHL has already and it makes it much easier to be able to create this one world one health in where you have your your clinical history here in Germany and you want to take it to Spain a health professional there should be able to really because his based on standards on medical standard medical coding and we work with them in this case this is for universal health campaign and an another district hospital in Cameroon Jamaica Ministry of Health this was one of the very earliest adopters since 2013 I believe so it's being over six years that they've been using it a nation nationwide level the Red Cross specifically in in Mexico Laos Ministry of Health the new Health Alliance of academic and research institutions this is one of the things that I invite anybody that has or works in a university or research institution to join us we just signed up with the national university of interviews in in in argentina a five-year memorandum to work alone them in the implementation of new health in in different countries and and of course is linked to the Carribean different academic centers have been working with us in defending areas of the world and I I feel after these ten years that is probably the most rewarding thing because look at people that is very who are high qualified that knows the latest on different areas whether is social medicine or worries by informatics and they join us in different master programs or whatever and of course the community of new health benefits from that and that is pretty much it Richard Stallman always says happy hacking when he finishes his talks or his mails and I just added the healthy hacking there I think that what is important here is to have this little sentence there that we tend to forget that you know health is a human right and it should be three and it should be universal and of course should never be negotiable anybody that needs health no matter whether you're very rich or very poor we should be able to get the best health practitioner possible and this was the very first project that we did in 2006 in in Argentina so these have now grown up ladies and gentlemen and it was what actually motivated me to move from doing the gnu/linux installations on public schools to actually tackle the socio-economic determinants of health of many of these kids to be able to race in health and indignity because that's of course what they all deserve so thank you I hope you like it thank you [Applause] now we have enough time – any questions that you may have about the project or if you want to join us of course if you want to donate a lot of money that would be even better we are all open for that so any questions that you may have on the project yes it's very hard because free software projects unless you put a counter somewhere you know sometimes you know about projects when they have a problem so they go to the mailing list and say hey you know we have this problem now we are we are documenting in a whu-oh page is called the health atlas if i'm not mistaken where we are putting all the known projects that we know but you know we have pretty much in all continents we have in India we have in Pakistan we have in Argentina most of them are southern hemisphere you know if you look at the map most of nahma but we also happen in Japan will happen Jamaica we have in Mexico and then again you know sometimes you see somebody from Peru saying hey I have this issue and then I good can you please tell us where you actually install it and it's up to them of course I mean it's nothing that we track or anything like that the project is hosted at the you know site so you can just go to health that can do that org and download it from there and we do not have any tracking things so just download it it would be very nice to have hopefully this map that it's part of the whu-oh will help us also and will help the people that is actually implementing it in this places to just join it and and register themselves there so you have an idea who's actually doing working because we need to make the project sustainable and this is probably the hardest part because you can go today to Cameroon for example and do implementation but if you live you don't have capacity-building there the project is not going to maintain itself because you need people that knows about computers there knows about health informatics in general to be able these these are large projects you know this is not like text document thing you need to build capacity there and that's probably the hardest part so if we have that map that we were talking then you will know who actually did implementation where and the local people can actually reach those people so that's that's where we're moving yes right well it really depends on the source pretty much so if the existing system allows you to interface via web service or beer you know if they can actually put that in XML or JSON format or or even interface between web service you can get the demographic data or you can get the clinical history and then it comes to okay where or how much data do I want to import because many times what happens is you are getting things that are not outdated or whatever you know so it depends I would say that in general before doing the the migration from one system to another is what do you actually want to implement I mean if you are going to have financial management if you are going to have policies you're going to have limbs it's going to take more time because you need different departments to work on all these areas and customize it also to your so every single country needs to have specific reports that you hand to the Ministry of Health in specific format and so on and also depends on who do you actually have on-site in the knowledge of those guys because if you have people like in Argentina the these guys are 100% independent they are doing their own implementations they've been doing it for years now and trubin pretty much see any messages from then on the mailing list because they are doing it themselves now we have cases in Iraq for example and in India where they are just starting and it takes much more than just computer scientists this you know you need somebody that knows about financial accounting to do all the charts of accounts and all this stuff you need people to know about stock management if you are going to put a pharmacy in place but it's again you know it's if you have a good design of your implementation if you have a good blue book you know where all steps all the resources that are going to be involved in that implementation are there beforehand you are going to be doing very well most of the mistakes in new health implementations come because people don't do people just install the system and think that you know that's going to pretty much do it by itself and hey that's pretty much everybody does this until they say hell no let's stop go back let's document you have a sort of a blueprint with all the steps with deadlines with meetings and with the resources and everything that takes to make it a project like this if you have that I've seen people going live with three four months of implementation that if you are just leaves if you are just a lab is much shorter most of the time because the only thing that you need is to have the interfaces with the apparatus to bring back you know the results and that's usually shorter but if you want to have a full-blown hospital management information system that takes time a lot of to do with security with roles who can do what within the system it's a role based authorization system so so there are always two ways one way is doing it wrong and fast and the other one is doing it slow and well and and of course the second one is the way to go once you have it then you can scale well you know but it will be a very big mistake to just jump in without really knowing the system yes I probably Excel knows more than that I mean what we have at least two installations in Germany from which we know and the one is a house practitioner whose billing privately so he hasn't no interface with the Konkan cousin with the legal ones and the other one is a daycare station for homeless refugees and people without health insurance so if we want to do billing or something like that with the public health system in Germany we need to have a certified interface which we clearly don't have at the moment we can build it of course but it needs some kind of funding or whatever our plan was to do this together with academia and we're in touch with for example the Apple on University of Applied Science in Bremen but it's a lengthy process let's say it that way so if you have knowledge in that area if you have people who are willing to spend some money in there feel free to contact us to give you another example we have a very active community member in in Austria and the the practitioner Society of Vienna is currently evaluating the usage of a free software system for their practice in the general Vienna area and they need also a couple of data exchange sets for example which are standardized and use are currently already being built because there we have really people who say yes we want this and we want to go for a free solution and they taking some money into their hand to realize this and as Louis mentioned this is a free system so you have to freedom to develop this further to add modules to fulfill the legal requirements for this to answer your question thank you thank you Axl yes mm-hmm well one is Laos they implemented in the largest hospital and maha siddhis hospital and the other one is and also on the center of Medical rehab and the other one is Jamaica both both of them are the Ministry of Health who are actually doing nationwide yeah and they hire in the case of to make it a higher local people to actually be part of the Ministry of Health and doing it and hey you know this is this is very has a lot of Merit because these guys you know but you know we know how governments go you know today you have one government and tomorrow you have another government in the government that comes tomorrow say Ivan like this and he takes it out so it's been there for six years he's it's a complete success you know so it's it's it's not easy it's not easy at all because it takes a lot of philosophy behind it's not just you know a technical implementation on the contrary yes again you know I think that you know health is very solid in terms of technology but I think that is even more solid in terms of philosophy and that's what moves us and then you know public health should be public and universal and that's why we're doing it then we can apply whatever state-of-the-art technology whether is again you know demographics epidemiology bioinformatics that's there we can we can do it you know in terms of technology what is more difficult it's actually convince the people convince the authorities to actually use free software in in public health care and that's up to us but when I say up to us is up to all of us to ask so when I'm going to vote somebody I'm going to say do you have free software in your program and if they say no way you know that's an easy way to keep point you know and we should all do the same because his is it's morally right to do so thank you any other question any other beer yeah and this looks better thank you very much guys thank you [Applause] you

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