What makes care open? A workshop led by Ezio Manzini

The OpenCare project has already collected incredible, humbling stories of community-driven care. We expect more, many more, to be rolling in in the coming months. But here's the catch: these stories are extremely diverse. They all do have some vague resemblance, but it is surprisingly hard to come up with a clear set of criteria to parse what is open care from what is not. For most people, open care seems to be like pornography: easy to recognize, but hard to define. This workshop attempts to shine some light on the matter, helping the OpenCare team and community converge on a shared vision of just what it is that we are studying.

Practical information

The workshop is led by @Ezio_Manzini and lasts about three hours. It is organized for the OpenCare research team, but, within reason, open to the community and the public. If you wish to participate, let us know by leaving a comment below.

Location: Stockholm School of Economics, Sveavägen 65 113 83

How to prepare

  1. Read this, the minimal viable common ground.
  2. Choose one of the stories of care already accrued to OpenCare, and prepare to tell other participants why you think this is a story of open care. The "care" part is generally fairly obvious, so it comes down to saying what makes these initiatives open. You can find many stories and the conversations around them here and here
  3. More detailed instructions on how to prepare – including a detailed agenda – are here
  4. A background paper by Ezio. This expands on the post referred to in item 1 of this list. It is a short read, highly recommended. 

Looking forward to this! 

@Costantino @melancon @LuceChiodelliUB @Lakomaa @Tino_Sanandaji @Massimo @zoescope @Rossana_Torri @Noemi

Wed, 2016-06-22 11:00 - 13:30 +02:00 (Europe/Brussels)
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Location and time

Noemi's picture

I'm in and looking forward to it. Added the location in the event text and NB: time is 9 - 11 30 CET.
Our site timezones don't work.. (for some reason on my screen I see 8 00 -10 30 CET).

Sharing here for the meeting purposes some stories for people to read, just in case you don't know how to choose:

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And my favourite OpenCare story is...

Alberto's picture

I have decided to put here my "homework". 

My favourite OpenCare story is still the first one: Greece's shadow health care system. I see a strong similiarity with the cytostatic network story in Romania, though I know less of it. 

No point discussing why these are care stories, that's self-evident. It makes more sense to discuss why they are open.

  1. They are open in the trivial sense that they are not constructed on intellectual property rights.
  2. They are open in the sense that people can freely decide to step in and become a part of it. There is not even a real vetting process: the Helliniko clinic works by asking people to volunteer for a group, so that which individuals are paired with which group is driven by self selection. As for the cytostatic network, I guess that came down to people phoning up and saying "hey, I'm flying to Bucharest next week, do you want me to carry anything?". Implication: the people who are most likely to step in are the people who themselves need to use the system. The community serves itself.
  3. They are open in the sense that coordination and management processes are relatively fluid. People coordinate using minimal tech and whatever works (Google Groups in the case of Helliniko). This is in stark contrast to, for example, Airbnb or Uber, where every user and every provider interact in exactly the same ways, and these ways are encoded in the affordances of the respective platforms.
  4. Maybe they are also open in the sense that the range of what gets done (or doesn't) is not written in stone, but emerges as a function of opportunity, motivation of people on the ground and perceived need. For example, Helliniko does not do the same things a hospital does: it does not do surgery, and it has no beds – it does less than hospitals here, because covering this need would increase complexity by an order of magnitude. Neither does it do first aid, because Greeks have a right to first aid even if they are long-term unemployed. On the other hand, Helliniko hands out free pharmaceuticals and even non-medical stuff like baby formula or food for (poor) people with food intolerances. So they do more than hospitals here. 

When all is said and done, everything in these stories is constantly renegotiated: the means, the teams, the actions. Except one thing: the people being served. In the Helliniko story, this is the local folks who have lost access to public health care. In the cytostatic network, it's cancer patients and their families, who cannot get hold of certain pharmaceuticals. The service is built around their needs. 

Finally: these two stories are exemplar also in the sense that they can use small contibutions, like Wikipedia (as argued here). You can help Helliniko even just putting word out on social media when the clinic needs a certain medicine, or the cytostatic network just by puntting a couple of boxes of medicines into your suitcase when flying to Romania. This does not make them more open, but it does make them better at taking advantage of being open. 

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Glitch...

Alberto's picture

Also ping:

@Massimo

@Rossana Torri

@melancon

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Open + Care with Ezio Manzini and online conversation

Rossana Torri's picture

Personally, but also from the point of view of the institution which I represent in the Opencare consortium (City of Milano), I feel I have not yet found the right "levers" to push people on the platform.  I'm also aware that for this reason we (City of Milan) risk to lose the opportunity to be effective in enriching the online conversation.

We tried to do that, through reporting on offline activities, but maybe this is not the best way (too indirect and "scholastic").

The fellowships could work well, but maybe we need also different tools, which are capable to affect the quantity and quality of the interactions.

As we said this morning, one possibility could be to formulate more precise questions, focusing on different "axes"/actions of OpenCare project. This could maybe help us to “attract” people interested/competent in some specific area of our research/action and catalyse interactions and mutual learning. Does it make sense? Did you take any decision at the end of the workshop?

Each partner has its own perspective and one of the challenging aspects of the project is “multiplicity in unit”, as Alberto wrote some days ago. For this I am trying to imagine how we could better position the perspective of each of us within the common frame of OpenCare.

If I look at the "local activities" we have developed in Milan during the previous month I would start from these points:

- What could be the added value of adopting a “maker/fablab” approach to “reframe” care systems pushing this kind of tools/skills/places into “community-driven” care systems?

- Which role can play the public actor?

- Which are the favorable conditions (context, type of communities, types of problem/demand of care…) in which this approach can be helpful and generative of innovation?

- Other….

In my opinion, and adopting the perspective of Ezio Manzini (networks of care), the “fablab concept/approach” that we are following in the “milanese pilot” (which intersects care; skills/education (learning by doing); sustainable development, and surely other things…) could be one of the strategic assets within a broader ecosystem where more actors are included and play different roles (citizens as care recipients and care-givers, administrations, public health institutions and professionals, no profit organization and so on…).

Following this argument, the “artefacts/services/devices” that WeMake will prototype at the end of the co-design sessions are not the final result of the process. In my mind final results (to be evaluated) are related to the questions listed above.

“Communities” (and here I have in mind: something that is not “families”, not individuals, but people linked by a common interest/purpose; so I would say "elective comunities") are the propulsive force and nodes of the ecosystem. People act together as they are moved by a common challenge (not “need” if you don’t like the term) which is not answered by traditional/closed systems.

Platforms (not only digital, but maybe also physical) could help to organize and improve the ecosystem (I’ll come back to this point using the example of “Welfare di tutti” in Milan).

 

Thanks to Ezio and to all of you for the challenging discussion!

...and sorry for the amount of errors that you will find in this text.

I'm going from one plane to another and I have no time for check :-)

Rossana

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Completely agree with you, Rossana!

Noemi's picture

Following this argument, the “artefacts/services/devices” that WeMake will prototype at the end of the co-design sessions are not the final result of the process. In my mind final results (to be evaluated) are related to the questions listed above.

@Rossana Torri so the way I see it is that we can:
 1) trust to get answers to these questions when the ethno/ network analysis is done - based on the stories of care that already mention intersections with regulatory systems:
Examples "You hear a lot about precarious funding, internal or outside conflicts, political and economic pressure, multitasking, impossible workloads, competition between projects. At the same time, dealing with complex and often rigid political and social institutions, community activists have to become self-trained experts in finances, public relations, lobbying, community-organizing etc. But these fights are long and complex and the institutions and their procedures require a patience that easily outlive the time, the physical and mental resources individuals and grassroots initiatives are able to mobilize." (Prinzessinnengarten, Berlin). Or ​working on a donation basis was my nod to being a non-commercial entity, which (as far as I know) means the clinic is not subject to licensing - similarly to people who volunteer in hospices, addiction recovery centres etc. I am conflicted on this - on the one hand, I recognise that some degree of regulation of healthcare is probably desirable to avoid malpractice and protect patients (Acupuncture clinic in Mortdoor, UK)

2) Launch a Challenge specifically on your question: What role for public actors to reframe care systems?
Have a look at the 4 challenges so far and let's work on a new one? It can be a description of Welfare di tutti and challenges you have. That would inspire others to open up too. I had a conversation with someone in Milano a few days ago working in healthcare and they were skeptical of sharing issues online because of damaging reputation. Setting a good example would go a loong way and inspire people to be open and constructive! 
Once the brief intro story is online, we can join forces to reach out specifically to administrations. You could run an internal process in which you ask people to send theirs by email and we upload them in accounts created with their emails and a username they choose. This way you don't ask them to come online from the beginning and come across a scary or weird platform? 

Let me know, I made the same offer to WeMake team a while ago but no brief... I also asked everyone in the team to share their personal stories of care and use them for engagement instead of linking to opencare.cc or generic pages.. Basically if we want conversations around something we need to start them and set the example. 

Sorry for the rant :-)

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How to formulate a challenge

Alberto's picture

In our experience, addressing communities works best when you ask them to share stories: experiential data. Asking for opinions or points of view is a bad idea. You get low quality information: half-baked abstractions, ideology, prejudice... we all are most interesting when we share things we have experienced directly. Experience is rich in content and deeply embedded in context. Looking at similar experiences (for example: being hospitalized) from many different points of view drives the "collective" in collective intelligence: the different experiences will combine into a community-validated point of view (for example, it becomes easy to recognize a single experience as an outlier if everyone else had a different experience on something). 

Consider the following question, taken by @Rossana Torri above: 

What could be the added value of adopting a “maker/fablab” approach to “reframe” care systems pushing this kind of tools/skills/places into “community-driven” care systems?

This is not the kind of question you can directly ask a community. People will immediately go into wishful thinking mode: "we should.." ("bisognerebbe...") and design irrealistic and broken systems that no one can implement. Individual citizens are not especially good at systems design. They are good at data processing. I have explained this at length in my book. You need to ask indirectly, in a way that encourages them to tap into their experience. The equivalent direct question should be something like:

Tell us about how you, or people close to you, use a DIY approach to staying healthy or caring for each other.

This immediately puts the person into a citizen expert mode. They have already attacked a problem. This will be highly specific ("a visually impaired electronic engineering student needed a way to design electrical circuits, so we did XYZ"). The system level knowledge will be extracted, later, by using ethnography to figure out what concepts, practices, culture etc. connect the different stories. 

We are ready to assist you writing challenges. 

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There was a document for minutes

zoescope's picture

@Noemi Could you share the link?

thanks!

Zoe

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Documentation - 2nd Consortium Meeting

Noemi's picture

@zoescope just saw your message. See in the Open Care big team folder -> a documentation folder with all notes and materials from Stockholm.

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Sharing Research

Franca's picture

@Lakomaa could you share with us your research " review of the literature of collective intelligence in care policies"?

It could be very interesting for us to have your research as a general framework, to analyze better the main success/key factors.

In fact, as you read before, we're thinking as City of Milan, with @Rossana, to create a challenge that could be also an overview about the role of a public actor as a facilitator of open care projects.

Let us Know!!

Thanks

Franca

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