The opencare project finished at the end of 2017. In Year 2, it continued to pursue its three objectives.
The first: explore the potential of communities to design and deliver care services.
The second: explore the implications of all this for policy.
The third: generalize from the provision of care services to the provision of anything.
Here is what we learned.
The potential of communities to design and deliver care services
Communities have great potential for providing care. We knew this from year 1, and year 2 only reinforced it. A swarm of community initiatives, most of them small, addresses health and social issues. Powered by collaboration, they achieve incredible results.
In Greece, they build tens of clinics with no money, no staff and no legal existence to treat, for free, anybody who has lost their right to public health care. In France, they develop a cheap, open source device for ultrasound diagnostics. In Ireland and Kenya, they build networks of mutual help for people with mental health issues or traumas.
Many of them – most, even – contain elements of innovation. Innovating communities take full advantage of small size, independence and closeness to the problem. Taken together, you can see them as a decentralized system that innovates in all directions at once. A bus kitted as a mobile studio for trauma counselling. An ultracheap modular system for people in refugee camps to build their own furniture. The list goes on and on. Community innovators are "crawling the solution space" in a way no organization could.
At the heart of this effort is the desire for autonomy. The protagonists of opencare want to be independent from failing systems. They want care services to treat them like adults. They want self-sufficiency, and the power to effect change. As a result, many initiatives address mobility issues, or skill sharing and education. The goal is always to empower the individual, through a community effort.
Implications for policy
Care by communities can be the R&D lab of care provision. Failure in a formalized health care system is very expensive; in community care initiatives, it’s typically low. This makes these initiatives a natural space for trying novel solutions.
However, regulation – as much as we need it – has a stifling effect on innovation. As a result, communities of care and policy makers have a problematic relationship. The former try to build things that are clearly benevolent, but not always legit. The latter are unsure whether to repress, to turn a blind eye, or to unofficially cooperate.
Cooperation between communities of care and public sector actors is far from the norm. But it does happen in the wild, and we were able to replicate it in the course of opencare (the City of Milan is a partner in the project).
We have advice for policy makers wishing to integrate open care in the European health care system. It boils down to:
- Measures that make it easier to start open care initiatives.
- Measures to help the successful ones to thrive.
The first item include tax deductions for private contributions to NGOs in care; creating business labs and incubators for non profits; extending the liability insurance of care professionals to when they operate outside of their workplace. The second item can be summarised as "cooperate, don't co-opt." Do not try to bring open care initiatives into formal care institutions. Rather, support them on their own terms.
The inner workings of collective intelligence
In year 2, we continued to explore the inner workings of collective intelligence in action. Year 1 had left us with four conclusions:
Collective intelligence has structure, and a network science approach can detect it. In opencare, we represent it as semantic social networks. These are a special kind of network, that encode information about both social interaction across people and semantic interaction across keywords, or "codes". In year 2, we discovered that the SSNA method is fairly scalable. This is because we can describe even a very large conversation with a limited number of codes. The strongest connections (those that keep resurfacing) form a "backbone" of the conversation. We explored techniques to filter semantic social networks, to get to that backbone.
It's all about humans. Collective intelligence is interactional. So, the highest-impact technologies are those that help bring people together, share knowledge, and distribute human resources across different contexts.
Collective intelligence dynamics can be encouraged with (some) success. opencare was able to start and steward a large scale conversation from scratch. The online conversation alone has over 330 participants, almost 4,000 contributions and over 800,000 words. Coding it required almost 6,000 annotations and 1,250 codes. This makes opencare one of the largest ethnographic studies ever. In year 2, we introduced new ways to engage participants and systematised our engagement strategy. Much of our effort went into making sure that we were being fair to participants. We concluded that many participatory processes are extractive.
The interface between online and onsite collaboration environments is a single point of failure, but it's also critical for innovation. We discovered that, by participating in (often online) communities of interest, people come up with new ideas. At times, they form result-oriented communities to execute them. This happened several times in opencare. For example, when a biohacking lab in the USA posted about its efforts to produce an open source protocol for making insulin, other labs in Belgium and Cameroun offered to help. This resulted in a global collaborative effort.
Things we did along the way
This journey took us through interesting waypoints. Among them:
- Build an interactive dashboard for exploring semantic social networks.
- Provide expertise and facilities to develop and prototype several devices to help mobility-challenged individuals. A wearable device that calls for help (InPe); a mobile ramp for wheelchairs to access shops (OpenRampette); and many others.
- Co-teach three design courses in Berlin (Edgeryders) and Milan.
- Organise community events. In year 2 we organised a community festival in Brussels and a final conference in Milan. All partners were involved.
- Publish a template of a fair social contract for participatory projects.
- Contribute to defining good practice for publishing ethnographic data as open data. As far as we know, no one has ever published open data of this kind before. In year 2 we published a much enlarged and improved dataset .
- Publish several papers). More publications are under way.
- Be ourselves open. Our main coordination channel is accessible to all on the open web. We published the opencare proposal with an open license.