Deploying collective intelligence towards care using open-technologies wielded by hacking communities.
[DRAFT – EVERYTHING IS UP FOR DISCUSSION!]
The European model of welfare is subject to significant tensions. An aging population; a fast-growing demand for sophisticated, expensive health care services; a widely shared consensus that public sector budgets should not increase; the weakening of the family as a support structure. All these trends challenge the traditional European model of public, free at the point of delivery health and social care. An emerging candidate solution is automation: replace nurses with sensors, clerical services (information, reservations) with websites, assist doctors with diagnosing algorithms and so on. The Internet of Things promises an integrated ecosystem of sensors/data processors/actuators to administer services to our bodies with minimal human intervention.
However, since the IoT is profit-driven and large corporates-dominated, it tends towards a system of “care by artifacts”. Worse, these artifacts are proprietary, untransparent, impossible to open and hack; their manufacturers have a business incentive to sell not the product, but the service – it stabilizes the revenue. This is most profitable if we never really heal, and stay dependent on paying the subscription fee to be well. On top of that, the IoT has well known major privacy issues; in this domain, such issues could lead to a dystopian scenario, with insurance companies getting involved, big data crunching resulting in people getting excluded from the system etc. Some pieces of this scenario are already playing out in the form of a drive to medicalise the human condition by “inventing” illnesses.
21st century care is not an engineering problem. Its boundaries, definition and even its goals are, and have to be, collectively negotiated. While specialists are needed, we need them to be embedded in an accountable, rigorous, but open and holistic discourse, where “discourse” includes not only debate, but also prototyping and testing. We propose such a discourse can only happen by collective intelligence; this makes care an ideal ground to test and deploy means to stimulate, aggregate and process individual contributions into a collectively intelligent process.
Based on the Future of care session at LOTE4, we propose to envision a system of “care by a community of hackers, armed with cheap, open source tools”. This scenario is not a return to the country doctor: we still get to enlist sensors and algorithms to alert us if an anomaly comes up. But benefits do not come from the artifacts, but from the community that builds, programs and deploys them, and that anybody can be a part of. Imagine a hackerspace for medicine, where doctors, technologists, and patients come together to design and deploy the system that best serves their local community; it would be resilient, and it would be trustable, because (a) it would be open source and (b) everyone is a patient sooner or later, so the doctors and the technologists themselves use what they build. There are already moves in this direction, like small companies that build medical sensors for Arduino, and Arduino has decided to fight the Internet of Things, trying to build an open source version of it (Massimo Banzi’s announcement).
This scenario should be investigated at the system level, encompassing everything from a redesign of the role of “carers” and “care receivers”, through technology and solutions, to an attempt to envision a scaled-up system and its impact on regulation and the market for care tech and care services. Again, this need is a good fit for collective intelligence, as no single person or small group can dominate the many different domains needed to to this well.
In practice, we propose mounting a project of type A (Collective awareness pilots for bottom-up participatory innovation paradigms) with two dimensions.
- Technological dimension: use online debate, annotation of content on the web, collective authoring of documents, argument mapping etc. as conducive to collective intelligence.
- Social sustainability dimension: we channel collective intelligence towards health and social care. From the process, we learn how to use collective intelligence as a general purpose sensemaking and problem solving force.
The activities could be:
- Sensemaking. Building a shared understanding of the problem, the candidate solutions, and the agents that could help build them.
- Prototyping. Actually trying to build a (hacker) community-powered solution to a care problem chosen for the purpose. The problem could be medical (how can I build my own control interface for my wheelchair?) or social (can we have high-quality co-living with people of different ages and abilities?).
- System-level design. Outlining what a national health service powered by hacker communities would look like.
Collective intelligence is deployed towards all three activities.
What we bring to the table
- Real community. CAPS2020 insists on not funding technology-driven projects with no real community behind them. However, CAPS2020 is still an ICT research programme, and has to deliver working tech. Edgeryders is a real community, cares about the issue, but also is unusually skilled at using online debating technology.
- Track record. Edgeryders has some track record in the collective intelligence space. We routinely use online ethnography in our own core consultancy business; we are marginally involved in the first CAPS round, in the CATALYST project; we are developing OpenEthnographer with a semantic web approach; we run CI software on our platform not as technology providers, but as users. In a sense, we are a poster child for CI tech.
What we need
- Academic institutions with outstanding research track records in the collective intelligence field. One of them needs to be willing to step in as consortium leader.
- People and organisations that are interested in the issue and would like to contribute to it. Could be doctors or patient organizations; makerspaces or fablabs; local authorities willing to engage in prototyping, and so on.
Why we can succeed
- We are a consortium including the very unusual suspects, including young people, members of the hacker community etc.
- We are academically solid, thanks to prestigious academic partners.
- We have an impeccable track record of mobilizing skilled online communities on interesting societal problems.
- We aim for a small consortium (5-6 members) and hopefully a relatively cheap project (around 1.5M EUR over two years).