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Care by communities

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if a i and then Li and B. and
welcome let the old state the few yeah
so my name's Natalie man I'm
an engineer and designer and also 1 of the founders of it's an online community and hackers activists artists engineers doctors lawyers and members share experiences from trying to do things usually things
that are very far outside the mainstream and open platform and we developed collective intelligence tools and technologies so that we can happen members still better and smarter initiatives together 1 of the projects so I should probably say that it's an you know do the people of people come from very different backgrounds but what they have in common is that were all experimenting with alternative solutions to systemic crises and 1 of the projects has come out of this connectivity is open care that's
so why lack of white white care we acquire we obsessed with fixing health and social care and why now I'd like to show you could say that the we need the audio
that to should we allow more
refugees in the UK with the currently given the housing prices constraints on public services she then at usual also is known on
so this is evidence as a representative of you get a and the UK and think they need no further introduction and I would say that a lot of hostility that we're seeing towards newcomers in our communities comes down to this it's 0 thinking the notion that 1 new person in the system to care for we use another 1 that escaped out and that person might be us as the authoritarians they manipulate these fears and they tell you that you don't need to worry about this because you are you because you're born here are because your wife or whatever and it doesn't really matter that they can't actually deliver on this promise is not credible it's a very attractive 1 yeah but the big elephant in the room is that these fears are partly justified so
spending on health care in Europe is growing faster than GDP which means that at some point it's going to be high over 100 per cent so we'll be working all the time just to stay alive and you know you have aging populations increasing demands on sophisticated and expensive health care breakdown of the family as a as a protective structure all of these trends are challenging the traditional European model of you know public free at point of delivery health and social care yeah yeah a the system you know if we want the system to to call we have to make sure I and increases in the efficiency of this of the health and social care systems the good news
is that we have a formidable source of efficiency gains all around us it's called collective intelligence it's a force that powers millions of people every day don't know 1 another to build the largest encyclopedia in history so with Wikipedia and other projects and that harness collective intelligence what you see under the hood art who things
you have self selection and social networks so self-selection means that every individual chooses for themselves how they will contribute what they will contribute but rather if they will contribute what they will contribute and when social networks mean that information and relationships travel and travel in ways that are fundamentally different from talked and talked on hierarchical structures where you have a central command and control over time these kinds of interactions give rise to complex unpredictable patterns because they're the result of millions and millions individual decisions but their efficiency is unparalleled and every time a collective intelligence comes into play disruption follows so wikipaedia at node it's a tiny organization and if you think about it how would you how would you map what millions of people are knowledge about the knowledgeable about interested in it right and you know OpenStreetMap which is a wiki-style map of the world this outcompeted basically you know the the um the expensive DVDs that you would use for your GPS navigators in your car don't forget about it and they know StackOverflow massive community millions of programmers that ask each other share advice on and on technical issues 24 7 365 days a year for free and what we see is that where communities care for their members and they do it efficiently and it's the same wiring let me show you some examples
so last fall I visited the metropolitan community clinic outside Athens it's a clinic that serves people were falling outside the public health care system because increase if you lose your job you're you no longer have access to health care system within 1 year so people are losing their lives as well as their jobs what makes this place special is a number of things the they don't accept cash cash right they don't deal with money they're completely they're completely the date that they're not they don't have a legal entity it's not even an organization what they do is completely illegal In everyone who steps in through the door is socialized to be a caregiver as well as the care recipient the doctors tell people you know tomorrow it might be me I might need help and they have a time back that's run by volunteers so that everyone that comes in and uses the clinic also helps others in a system of mutual support in 4 years you you had been at least in this clinic alone has a 40 thousand people and their 68 of these clinics in Greece alone so for years they've built as shadow health care system that serves the maybe 10 % of the Greek population that doesn't have access to the public health care service and they do this with no central command no top down control no legal structure and no money yeah the this is the longest
standing Internet Learning Center in the UK it started out with the decline of united with industrial decline at a group of artists that saw that there was a lot of electronic waste and that a lot of human potential was being wasted so what they did is they started collecting electronic waste they jacked it up with open source software and they started using this to help people upgrade their skills and this is in an area of a lot of deprivation but again self-selection they don't target people based on their problems they don't say OK this is space for long-term unemployed everyone interested shows up and we socialize people to help 1 another learn now in terms of efficiency these guys are recycling they're they're using on news that like excess capacity that would otherwise be wasted in the system the most important of which is human potential and this is boy buoyant
boy is a decentralized alternative to emergency response services site 1 1 2 in Europe on 9 1 1 in the states it's set up by and for groups that are ill served by the mainstream emergency services like activists you wanna know why that's relevant is look at black lies matters or community service providers or you know anyone you can think of who might not want to call the cops on their friends with something happens so what this system does is it allows any group to quickly direct know when they receive a response that in in a distress call to quickly connect the trusted network with that person and help the response and a trusted network can be friends family in a fellow activists advocates and they do this by putting this on a layer as a layer on top of existing Web sites it's also had done in a way that each group can customize their instantiation of boy and so that it fits their needs and what's really cool about this is essentially distributes the burden of care so if more people are engaged in caring you get more care in the system yeah
so these initiatives display that degree of efficiency that's you know unparalleled by the public health care system but they're not easily incorporated into the existing 1 and the reason is that there is a clash between caregiving and management culture we ask ourselves why is it that you can
do this well they know especially what what can we do this especially since communities caring for 1 another is the default for humanity it's only in the 19th century with the introduction of the pension system by Bismarck phase start to have the centralized provision of care and it's not until the 20th century the 2nd half of the 20th century that this advanced top-down and welfare infrastructure is in place and yet we talk about consistency especially in Europe and that's what we're referring to no over time this system has become very complex and at the same time you had science culture and scientific culture coming into institutions this is led to an increased demand for comparison and the no control that the story is that this is supposed to be good for us it's supposed to make us more efficient at using resources the problem is that it doesn't work particularly well and you know with care of measuring as hard as it is but with the health and social care it's even harder I mean how do you how do you Görlach and how you Gajda its effectiveness of healthcare interventions are a medicine years of life with no 0 you also need to look at quality and basically this this system has developed a very complex and at a very complex variety of coefficients where you way these different factors the problem is based on survey data so that asking stuff like would you rather live longer would you like to lose a leg so you know or would you rather go down because of this medication or reply before the consequences of that like so the problem is if you ask a 20 year old footballer at the peak of their career you know would you lose a leg and be like no it would be the end of my life I would tell myself you fast forward it when they're in the seventies and you ask the same question that you know like changes your perspective changes in fact 90 per cent of people asked to change their mind when they're in the situation where these questions are actually relevant which means that a lot of the data used for management decisions it's phantoms the
the the 2nd problem
is is that you know we we we tend to think of technological innovation as bringing a lot of new opportunities you know it can either be that it lowers costs or it raises the quality but the thinking is that over time technology increases the efficiency of the health and social care systems but you might not know that health and social care is the only is this 1 of the few systems where costs actually rise as technology is it's cheaper and the reason is that we've new technological innovation and you get a lot of new opportunities for things to go wrong mn so whether it's body pacemaker software or whether it's a leaky databases where are patient data is stored it you know you you have problems and what happens is that the system tries to compensate for them administrators want more reporting they what more centralized control and you end up in a situation where as a doctor you can end up filling in 10 different registries justice of prescribed aspirated and so doctors find work-arounds you have heard stories of nurses higher and just to move of mouse every 10 minutes because there's this software is so difficult to use and it locks out after 10 minutes and then you try to log in or in situations like where I'm from in Sweden where if your kids are at a football match and someone gets hurt as a doctor you're forbidden from helping it's OK for everyone else so this leads to increasing overhead and you know it is it's meant to make it more efficient it's meant to make the system is better but it doesn't the the yeah so on let's take a
case like like dementia which I mentioned before as you know with Alzheimer's and was also with Alzheimer's that aim rehabilitation and it you know it's it's quite tricky because 1st of all you have to find out what the person can do anymore and and try to figure out the right tool to help for example if you had a stroke if you had a you know on 1 side then you may be need as k so both sides have you need a walker but more importantly you need to figure out what they still can't do in 98 % of dementia patients want to be at home so you need to figure out how to create tools and supportive environments that allow the person to be as independent as possible but doing this requires patience and attention and time and this is something that communities are very well suited to do but large bureaucracies cannot especially not when you're seeing as we see as a state you can look at this granular detail but these initiatives also have the challenges because
from the perspective of the person receiving care you need continuity you need coherence between interventions and you need predictability predictability for smaller initiatives that our fluid and ad hoc this means that you have to be able to coordinate and you have to have interoperability and many initiatives are very focused on the 1 small thing that they're working on remember collective intelligence people contribute where they feel that they can when they feel that they can however the view that they can then people running these initiatives are often really stretched for time and they just don't have the means or the appropriate space for them to you know to invest in their personal development to learn from others so you're not yeah reinventing the wheel the other thing is that if you want to play with you know if you want to if you want to interact with the big players which you have to do if you wanna buy medication the pharma you have to have a negotiating power and you have to have shared strategy medication medicine in other parts of Europe is cheaper in in the middle is it stupid Italy than it is in other parts of world because the Italian state has become much more effective at negotiating they're the client who else is gonna buy this medication but in other places not necessarily the case so if these initiatives are to grow resilient you need to help me to create the incentives and the context where people are sharing information with each other learning from 1 another and building on each other's work and need infrastructure to support this kind of community driven these kinds of community driven dynamic you wanna do it in a way that they can complement the existing system because it is needed but without forcing them to adopt you know the same dynamics and things that make the existing systems dysfunctional and so this is what open care is trying to do it's
on the world and here is trying to do is its finding people who are driving these community-based care initiatives and summing them to self-monitor and share this data and make sense of it together with others and end the thinking is that over time we can develop a framework where these initiatives can build interoperability and that kind of collective awareness and and
it's not the 1st time so between 2014 and 2015 we're on an early stage prototype In the Italian city called material it's 1 of the oldest settlements on the planet so in a collaboration between City Hall and edge writers we set up something called a monastery so basically what we did is we connected local create citizens then initiatives like using Open Street Maps in new ways building a timetable for the bus something you would think would be an obvious resource that you need like Hurricane upon you not there a we connected them with appears in an international networked conversation no what we set up was a kind of residency program where people would move in from different parts of the world and they would collaborate with their peers in the local environment and building some of these initiatives what came out of this was mind-bending project site teaching a thousand kids and local community in a peripheral part of the country to code or you know building open-source solar trackers is is what we saw was that when you provide an infrastructure for people to just get on with solving the problems they care about the way they want to things come out of this solutions come out of this that you could never have imagined and that no 1 could have come up with a loan it worked it captured the public imagination had journalist flying and from the New York area in the nation and the features and we never recorded any of this we just got on with this it works and we think it's time to think an act and build a bigger
it so vision widow thing hair where this is all going as we want to build their social clinic for the future what we want to do is we want to build a large scale prototypes based on the you know the the lessons we learned and also the FA Cups we made with the 1st prototype and the idea being that this prototype clinic would feed into the research project adding valuable data and at the same time it would draw the lessons learned from the research project to build its services at you know this is this
is a mad ambitious project you know we can't and we shouldn't do it alone open care is powered by at a partnership that already includes the city of non University of stock of school economics Sorensen there somewhere and uh and how maker spaces in Milan and beyond you know it's con it's come quite a long way we are we're we already raised a and millions of 1 . 6 million in research funding and and there's only there's a lot of space to get involved in o we are going to get where we want to go but with your involvement would get there faster and better and if you have questions or you'd like to know how you can get involved you know just right to me or come up to me afterward if you have detailed domain specific questions like the doctors where everyone's watching the Twitter feed so you can use the open care hashtag and ask what you want thank you mn and
yet are there any questions so I know it's a lot to take it yeah a go but on your other on the and since organizations when they grow will
always to that of the bureaucracy in this domain you're going main criticism on the established system hole in which 1 want to avoid that when your organization's scroll at so criticism I wouldn't say it's just In
fact you just look like well self selection and social networks have a funny way of of invading this so if you were set up in such a way that nobody is in anybody else's chain of command and most of the engagement is on a
volunteer basis you will have filtering things that people don't see as being meaningful prewarning gated it doesn't matter what the center says he will just not engaged and your initiatives will die so there is a social contract that has to be there and you know it's a self-regulating mechanism and then you know the difficulties like we just put a post on the edge writer's block about a blog about older focus we made with running an organization had difficulties etc it's hard but what's the alternative
but the so when Jonas have over the years privatized health care system and go and see that's the
big problem was the what you're planning because so but let's face the German system the health care systems use doomed or what they're doing is ruining everything your father for equal health care system and we're aiming to privatize more more and how you think you can do with them like this all your Greek link them know actually hold works but it's completely out of the system so what's your vision for that you want to be assessed the model the mobile you think you can be implemented and if you're gonna be part of the system how are you going to be part of the system just use which holds care or what what do you think of coming up we
so you know complexity and emergence as a bitch the complexity and emergence means that long-term plans forget
about it what you can do is you can change the local fitness landscape right you can move faster to build a prototype of the smart people who ambitious a competitive understand that it's better for their individual political or in professional and dishes and they start to shine light on this elite a monastery the the nothing had been running for a year we were asked included in the national development plan for rural areas we get Ministries of Foreign Affairs asking us to help them shape their a node in the agendas and strategies for foreign cooperation Center I don't you Joey eaters sets Sydney in don't go head-to-head with existing systems build better the faster were smarter were tougher because we have to be an you know that's all you need you can get and again you know it's whose persist Daniel someone in in in the community said you know if you don't if you don't play the game the game place you just be smart and trust the people that are around you to be smart to sell the set and questions
effect and so I I think I said a really interesting thing this kind of systems comes mainly into place when the other system fails and if it's already prepared it would be small there were the rest of the stuff goes crashing down but you mentioned that you want to support some of the infrastructure that supports these initiatives could you may be a bit expand on that because I knew of would like to know more about so we start by understanding what people
are doing and why and which obstacles are coming across and in a collective conversation you also start to see positive externalities like the princess even gotten in Berlin right at people saying that the greening the city or they have 1 ambition and then you start to see hey but the older people in the community are more active than moving around a lot you start to see data in the health care right so what we do is we have people self observe and make sense of things together and based on that if you have a short holistic understanding you start to build what is needed so I don't need to know and it doesn't make sense for me to say what that is you just create a space where people can make sense of things together and where there's a real open conversation about how you doing things while you're doing this as you you so we're both from Sweden right we have a social health care system a welfare system that is the pride and joy that everyone society In the main northern Sweden as citizens have occupied a local hospital and are basically doing what they're doing in Greece they're providing health care services illegally because the central entity was to shut down service and Sec 18 million an 80 80 miles to the nearest hospital that this stuff is already happening all we're doing is just connecting people and figuring out how it can be an alternative and happen whether you know you want it or not it's already there you see it and at is all but in L
the thing so I hope you continue the discussion
that out the width and height theme that you're
Metropolitan area network
Hypermedia
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Computeranimation
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Onlinecommunity
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Metropolitan area network
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Datennetz
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Teilmenge
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Fluid
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Gammafunktion
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Cliquenweite
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Metadaten

Formale Metadaten

Titel Care by communities
Serientitel re:publica 2016
Teil 120
Anzahl der Teile 188
Autor EL-Imam, Nadia
Lizenz CC-Namensnennung - Weitergabe unter gleichen Bedingungen 3.0 Deutschland:
Sie dürfen das Werk bzw. den Inhalt zu jedem legalen Zweck nutzen, verändern und in unveränderter oder veränderter Form vervielfältigen, verbreiten und öffentlich zugänglich machen, sofern Sie den Namen des Autors/Rechteinhabers in der von ihm festgelegten Weise nennen und das Werk bzw. diesen Inhalt auch in veränderter Form nur unter den Bedingungen dieser Lizenz weitergeben.
DOI 10.5446/20675
Herausgeber re:publica
Erscheinungsjahr 2016
Sprache Englisch

Inhaltliche Metadaten

Fachgebiet Informatik
Abstract The migration issue dominates the European political debate. The influx of migrants, some people say, will break the European welfare system. Any new person coming in is reducing the amount of care that others can get. Care is a zero-sum game. Is that really the case?

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