Concept Note: The future of care in the hands of hackers

Deploying collective intelligence towards care using open-technologies wielded by hacking communities.

[DRAFT – EVERYTHING IS UP FOR DISCUSSION!]

Problem

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.

Approach

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.

  1. Technological dimension: use online debate, annotation of content on the web, collective authoring of documents, argument mapping etc. as conducive to collective intelligence.
  2. 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:

  1. Sensemaking. Building a shared understanding of the problem, the candidate solutions, and the agents that could help build them.
  2. 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?).
  3. 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

  1. 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.
  2. 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

  1. We are a consortium including the very unusual suspects, including young people, members of the hacker community etc.
  2. We are academically solid, thanks to prestigious academic partners.
  3. We have an impeccable track record of mobilizing skilled online communities on interesting societal problems.
  4. We aim for a small consortium (5-6 members) and hopefully a relatively cheap project (around 1.5M EUR over two years).

Weird and uncomfortable.

Nadia, the HackCare manifesto, HackCare the phrase and the concept of Hacker Care homes, these are all things that I have been working on for the past 6 months to a year, with a diverse group of people (that happen not to be on the ER platform), I decided to run a session on this at LOTE4 with Remy because I thought it would be interesting and that there would be a lot of overlap with conversations that we’ve had in the community in the past years. I didn’t do this because I wanted this to instantly become an EdgeRyders project. Especially given that in the UK I have been in discussion with possible partners and funders over the past few months.

Whilst I generally don’t take issue or make claims of ownership, I find this post, and re-appropriation of the research material that comes from a very considerable amount of work, with zero interaction with myself (putting it mildly) quite offensive.

I’m saying this now because I think it’s important to be clear about this - and because I have observed this as a worrying trend in EdgeRyders (i.e Case Study Adventures going into other contracts/offers is awkward, given that I and others designed and ran that project with my/our own funds, time and since then have received zero remuneration from the LOTE4 budget).

Maybe I’m being overly sensitive but there seems to be no acknowledgement of this recent comment, combined with the fact that last month you completely cut me out of a potential collaboration which Annemarie put on the table via email on the grounds of ‘diversity’. What gives?

Space for everyone

Ben, the concept note is an evolution of this, posted publicly about a month ago. It targets a programme called CAPS, centered not on health, but on collective intelligence. Edgeryders is possibly a good match for it, given platform, OpenEthnographer, Edgesense etc. etc. This programme wants (1) research (2) on methods (and maybe tech) to elicit, gather and process individual contribution into collective intelligence, whatever that is. Care is a “case study”; it makes obvious sense because it is an interesting issue, and many people are passionate about it, but in the end your delivery for CAPS is a method, instantiated.  I speak as a minor co-author of a successful last-round CAPS proposal (this); that project was 70 pages of collective intelligence literature survey, added value of the proposed approach, and all the bells and whistles. The heavy lifting was done by a guy who works at MIT’s Collective Intelligence Lab. It’s academia, computer science department.

A project about rethinking health care in a decentralized way (without a “big guns” academic approach) is not going to make the cut for CAPS, so it’s unlikely that whatever you are cooking in the UK enters in zero-sum competition with a CAPS project. On the contrary, it might be advantageous to have loosely coupled projects in the field: projects can share human resources, coordinate to achieve critical mass at events etc. It may also be a form of risk management. Suppose, for example, you have an org that can perform well on both a CAPS-style project and a more production-oriented social innovation style/NESTA Public Service Lab style project: that org can both join the CAPS consortium (assuming we can put it together) AND apply for production-oriented funding elsewhere.

Also, the issue is out there, it is big and interesting, and very many smart people are looking at it. This is not to say your own research contribution is not important or novel, but people have been working on it for years now, and they are not letting it go. NESTA interviewed me for a job directing a project called People Powered Health in 2011; when we went to Milano a couple of weeks ago we met a visually impaired guy working away in Costantino’s makerspace at building personalized aids for himself. The national health service is quite liberal when it comes to buying products (white canes etc.), but all such products are proprietary. He cannot get components and help to make his own aids – unless with his own money, and maybe even breaking safety regulations. Costantino is intrigued, and Costantino means also Arduino etc. You get the idea: it is likely that people we don’t even know are negotiating projects in this space with all major funding agencies. Good luck trying to ringfence it.

And finally, the reason why we posted that thing well ahead of time and in a part of the website visible to all is exactly to throw the doors wide open to anybody who wants to be part of it. Do you have something you would like to do? A partner you would like to work with? Just step forward, like others have done: all options are being considered at the moment. And notice that, as of now, ER LBG is (as usual) doing the homework to give everyone access: researching the call, attending the CAPS Infoday on December 16th to get a better sense of what that crowd is about, calling universities and what have you. We use community reflections as a source of inspiration, but then we give back in the form of an open invitation. For full transparency: no decision has been made yet. We are in preliminary discussion with the Design department of Politecnico di Milano, notably Stefano Maffei. The idea is to ask his mentor Ezio Manzini, the dean of service design and a very cool guy, to be the scientific coordinator (but he may refuse). We will be talking to SCIMpulse Foundation too – I have been wanting to work with Marco for a while now, if this does not work we will do something else. If we fail to find or build a solid partnership, with at least two top-notch universities, we will not apply. Edgeryders can only be a minor partner in a CAPS project.

Ok, this takes care of the case in question. Then there are a few loose ends in the background; I’d like to discuss them with you. How about a call next week? Tentative agenda:

  1. Appropriation of research material is a pretty serious allegation. I don't see it (in fact, I was not even aware you have written research material). In her note, Nadia references a LOTE4 session and the session documentation, proposed by Remy, which you and I and others attended. It should be OK for anyone in the Edgeryders community to reference LOTE sessions; do you find this reasonable? Or are we having a rerun of the discussion on openness – speaking of unacknowledged comments?
  2. The LOTE4 budget was discussed with you – as per your suggestion, we beefed up Lauren's grant to acknowledge the work she did in Istanbul and elsewhere. A month ago we published the wrapup, including the numbers. No one made any observations. Did we do anything wrong? Is there some loose end to pick up? We can still do it, of course.
  3. Case Study Adventures for me boils down to this: we observe that some people (Natalia and Lauren come to mind) want to lead adventurous lives. So we look for clients and projects that would pay them to do so. Doing this is the very reason Edgeryders exists! I get very confused by you, of all people, casting it in a negative light, especially seen as we do not prevent anyone from doing the same. On the contrary, we would only be happy if more people did it. Or do you object not to the thing itself, but to being called with a name that you invented? Or what, in general, would you like to happen?
  4. I am not aware of anything going on with Annemarie, even at the idea stage – but then our projects dashboard is still young, and maybe it slipped through the radar. Would you like to explain what exactly you are being cut out of?

Hi Ben,

Two general points before I go into detailed responses below. Last point first.

  1. “Maybe I’m being overly sensitive but there seems to be no acknowledgement of this recent comment, combined with the fact that last month you completely cut me out of a potential collaboration which Annemarie put on the table via email on the grounds of ‘diversity’. What gives?”

-  I asked to have a separate call with Annemarie to explore potential for building two upcoming EU funding calls. Before we even get into any discussions about content, we need to figure out if we can build the conditions to be able to participate (lots of EU requirements, need to find leading partner with specific administrative capacity and experiences etc) as a partner organisation. I really have a hard time following her especially when other UK based people are in the “room”: there will be a lot of implicit assumptions, references to things that are new/foreign to others, etc so in order to really understand what is going on I prefer one on one conversations (see forwarded email). We are still looking for possible lead partner, so I’ve been exploring how to step up efforts to find them.

  • This concept note was produced after a conversation with a person called Stefano Maffei at Politechnico in Milan in which he explained that in order to engage prospective lead partners we ought to present a couple of themes that the community is exploring. If they see a match with their current areas of interest then it is more likely that the people we reach out to will make an effort to get their organisations on board.
  1. “I’m saying this now because I think it’s important to be clear about this - and because I have observed this as a worrying trend in EdgeRyders (i.e Case Study Adventures going into other contracts/offers is awkward, given that I and others designed and ran that project with my/our own funds, time and since then have received zero remuneration from the LOTE4 budget).”

- This is important to me. Please specify exactly what you mean here, can you give examples? To the best of my knowledge the Case Study Adventures have been referenced (although a conversation is still ongoing about how, if at all to make use of them) within the context of the same Rockefeller Grant that made funding travel, accommodations, food etc for LOTE4 available of which you were well aware that I was pursuing.

  • The Rockefeller grant is for developing the Open Ethnographer free software and even this is going back into the community in the form of paid tasks that anyone can claim and submit (more info here). Only a small chunk of it was for LOTE4, but this is what we could get (they weren’t up for funding an event, only parts of it as part of the work of developing the software).

  • Lauren Lapidge, Maria Byck and yourself have been offered reimbursement for travel costs incurred during the case study adventures from the money left once all the invoices agreed on in advance were paid. To be clear, no one else except for I think Natalia (she moved to Matera and worked full time for two months) has been renumerated for the time put into building a great event. That we would all be working on volunteer basis was explicit from the beginning, or am I missing something?

  1. “Nadia, the HackCare manifesto, HackCare the phrase and the concept of Hacker Care homes, these are all things that I have been working on for the past 6 months to a year, with a diverse group of people (that happen not to be on the ER platform), I decided to run a session on this at LOTE4 with Remy because I thought it would be interesting and that there would be a lot of overlap with conversations that we’ve had in the community in the past years. I didn’t do this because I wanted this to instantly become an EdgeRyders project. Especially given that in the UK I have been in discussion with possible partners and funders over the past few months.”
  • Yes. This is also a conversation many others have been having for years and in many different fora. Almost two years ago Susanne and I made this visualisation that was used for discussions during #31C3, my own home is a prototype in response to the need for inter-generational living spaces and I am currently looking for a space to scale up the prototype in Brussels. Your reaction gives rise to some questions for me: How do you relate to everyone who contributes to the work on open platforms- are they not “co-authors”? Do they not have shared ownership of the ideas and concepts they participate in developing? How about those who help create conditions/setting for those discussions to happen? Even if people have in our/your opinion contributed nothing to a context or conversation, I don’t know how you would go about enforcing ownership of names etc without breaking community and open collaboration.
  1. “Whilst I generally don’t take issue or make claims of ownership, I find this post, and re-appropriation of the research material that comes from a very considerable amount of work, with zero interaction with myself (putting it mildly) quite offensive.”

-  Help me understand what it is you find offensive?  The explicit purpose of LOTE4 on Stewardship that we worked on together was to generate more opportunities for more people to work on things that matter. You would explore options in your directions and contexts,  others explore them elsewhere. This is how the event was built, it is how resources were surfaced for unMonastery, for LOTE4 and many future things to happen: which in themselves are the result of very considerable work put in over a couple of years now. The purpose of a closed group is that we can post strategies, ideas, proposals and documents etc to be discussed before they go public, and you are in this closed group, so I am a bit confused about the zero interaction part…