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Open Participatory Engagement in Collective Awareness for REdesign of Care Services

Periodic Reporting for period 2 - OPENCARE (Open Participatory Engagement in Collective Awareness for REdesign of Care Services)

Reporting period: 2017-01-01 to 2017-12-31

"In 2017, opencare continued to pursue its objectives. Here is what we did and learned.

-- We kept exploring the potential of communities to design and deliver care services --

Communities have great potential for providing care. We were able to witness and interact with a swarm of community initiatives, most of them small, that address health and social issues. Powered by collaboration, they achieve incredible results. People all over Europe build tens of clinics with almost no resources, develop a cheap open source device for echographies, build networks of mutual help for people with mental health issues, and so forth. Innovating communities take full advantage of small size, independence and closeness to the problem. They are decentralized systems that innovate in all directions at once. Community innovators are ""crawling the solution space"" in a way no larger organization could.

At the heart of this effort is the desire for autonomy, to be independent from failing systems. These initiatives want and need self-sufficiency, which they transform into power to effect change.

-- We kept exploring the implications for policy --
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. Better integrating open care in the European health care system requires measures that make it easier to start open care initiatives and help the successful ones to thrive. And most, do not bring open care initiatives into formal care institutions, but rather support them on their own terms.

-- We kept studying and exploiting the inner workings of collective intelligence --
We continued to explore the inner workings of collective intelligence in action. Collective intelligence has structure, and a network science approach can detect it. Studying the backbone of semantic social networks, we can assess that collective intelligence is primarily interactional. The interface between online and onsite collaboration environments however remains a challenge in terms of being able to reads and analyse collective intelligence dynamics.
"We pursued our work on engagement. In particular, we organised offline community workshops and combined their output and reported interaction with online content. Fellows were appointed by competitive selection following an open call, and tasked with connecting the opencare community with specific communities. We organised a community meeting, OpenVillage festival, which served as a powerful driver of enthusiasm and engagement, and resulted in a large expansion of the opencare corpus. We ran tens of serious playing sessions in the context of several high-profile international meetings. We involved tens of citizens and hackers in the evaluation of ideas and risks, followed up by roundtables on medical ethics and finance. These and many other activities helped grow the opencare corpus to include 3,887 contributions by 332 individuals, for about 820,000 words in total. This is comparable to the length of Tolkien's The Lord of the Rings trilogy, plus that of Dostoyevsky's The Brothers Karamazov. It is very large as ethnographic studies go: the main journals regularly publish studies based on 6-20 informants. Year 2 also saw the launch and continued improvement of the GraphRyder dashboard, the main opencare tool to aggregate, visualize and explore semantic social networks. GraphRyder proved useful to investigate collective intelligence on a daily basis and make sense of all interactions echoed through conversations and taking place in communities.

opencare also focused on activating and deploying a development process, from conversation to piloting (“From talk to action”), around 3 main prototypes, 2 of them in synergy with the Municipality of Milan. Starting from online and offline community needs we were able to co-design, document and disseminate new bottom-up solutions within an innovative vision of community-based care system. Opencare Maker in Residence (MIR) was a special residency program which allowed to multiply the prototyping effort testing the role of Fablab as accelerating platform of new projects. These initiatives led us to shape an engaging type of awareness around technological capabilities, lowering the barriers of digital divide and opening the possibility of shaping a new generation of users.

We have engaged citizens, professional care-givers, scientists, managers, entrepreneurs, and representatives of many minorities (LGTB, familials of subjects affected by developmental disorders, musculoskeletal rare diseases, …). Simulations of practical problem-solving scenarios, and sense making sessions allowed us to evaluate their perceptions, the degree of coincidence (or lack thereof) between their predictions/expectations and the evolution of scenarios, their emotions. The resulting reflections contributed to the generation of new scenarios, identifying principles and ideas from this process of recursive experience and reflection.

opencare contributed longer term expectations for communities (and, in the opencare context, more specifically for City of Milano. One example of a wider impact although small scale experiment is the development of three prototypes selected during the ""Call for solutions: open innovation for community care"". The designers of these three prototypes were granted with an incubation and acceleration programme exceeding opencare timeframe (this is possible thanks to an agreement between City of Milano and local firms).
On the network science front, opencare got closer to approaches looking at how intimacy is affecting the shape of interaction networks in online communities, with potentially detrimental effects. Ongoing research in experimental psychology promises to proof a causal link between network structure and prosocial behaviour, which may put on firmer ground opencare's approach of treating online community management as social network design.

opencare attempted to take exploitation out of the participatory design picture, by underwriting an explicit social contract with the opencare community, styled as a collective author and researcher. To this end, we run a social lab to reflect on the nature of accountability, governance, and ownership in distributed participatory design in care provision. By role-playing, simulations, and storytelling, we explore the dynamics of the distributed innovation systems under a spectrum of desirable, and less so, schemes of governance, and value propositions from the community members.

Our reflections concerned with online design of community driven care contributed directly to the debate about direct opinion harvesting from citizens. By making explicit the norms of a social contract that binds online interaction in a sustainable continuing conversation about community led care, our preliminary study offers an argument to look at citizens involvement in policy making as a continuing process that should be cultured by appropriate governance and community management.
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