Open care as radical socio-technical innovation: reflecting on the shared vision behind the OpenCare project

ethno-opencare-additions-2
care
project-opencare
definitions
strategy
cat2-living-environment
cat2-service-infrastructure

#1

Premise

In my understanding, in the first round of the Open Care discussion both the terms “care” and “open” have been used referring to different meanings. This premise is my personal attempt to map these different uses.

Care

  1. Care referred to a special kind of human interaction: someone (the care giver) gives attention to, and takes action for, someone else (the care receiver). 
  2. Care referred to a set of artifacts: the products and services of the system which, in a given time and place, enables the care activities (i.e. the care interaction of the point 1). 

Open

  • A.  Open referred to the care system: a system is open when different actors have the possibility to play a role. This can happen when the whole activity package is opened and divided into parts with the possibility, for these different parts, to be distributed among different actors.  
  • B. Open referred to the information flow: a system is open when the information on which it is based are open. This can happen when these information are totally visible, accessible and transferable to other systems.

Open Care

Considering the different meanings of “care” and “open”, in my view, there is a clear correlation between 1 and A, and between 2 and B:

A1 Open care refers to the final result. That is, it refers to the characteristics of the care system we intend to create: a care system where different actors (experts and non experts) are in condition to play a relevant role.

B2 Open care refers to the design/production process. That is, it refers to the characteristics of a co-design and co-production process: the process leading to the realization of the products and services on which an aimed care system is based.

Our discussion…

For what I have understood until now the general motivation for the research (see the Open Care research introduction) seems to mainly refer to A1, where the consortium profiles and experiences are mostly linked to the B2.

In my view, at this stage of the Open Care research we should take a clear decision: do we want to deal with A1, with B2 or with both, A1+B2. If the choice is for A1+B2, we should clearly define when, where and how we will discuss of A1 and when, where and how of B2.

NB: The following Notes mainly refer to open care assuming the A1 meaning.

Care

Since the beginning of human history, care has been exchanged (given and received) inside homogeneous, durable and relatively closed groups of individuals: families, clans, village communities, urban neighborhoods … In the past century, in parallel to that, care has been delivered also by dedicated institutions: hospital, kindergartens, elderly residences…

Today, for several reasons, the demand of care is growing and becoming more complex, while both the traditional and the modern offer of care are less and less capable to cope with it. In fact, in the present fluid, hyper individualized societies, families, village communities and urban neighborhoods are weakening (if not totally disappearing) and individuals, given their life structure, have less and less practical possibilities to take care of others (even when, in principle, they would do it).

In turn, care institutions, which were supposed to substitute the traditional community’s and individual’s care, have less and less economic resources (and often political will) to do it.

The gap between the growing demand and the shrinking offer of care is the basis of the present care crisis: a lack of care that is not only practical (the caring system do not succeed in coping with the care demand), but also psychological (the sense of loneliness deriving by the lack of sense of care throughout the whole society).

To overcome this crisis a brand new care systems has to be imagined and enhanced. To move in this direction, a first step is to better understand caring activities, considering their nature and diversity.

The practical/organizational side of care is particularly important because care is not only exchanging information and knowledge. Care asks also for proximity and action: doing something for each other, taking time and being committed.

Care activities. Care activities are quite diverse: they can be performed by whoever could be willing to do it (as to make the shopping for somebody who is momentary sick); they can require a lot of time, attention and assumption of responsibility (as to take care of the daily life necessities of somebody seriously ill); they can require timely actions by highly specialized experts (as surgery interventions in very specific moments). And so on.

In general terms, these differences are characterized by a set of main parameters, as:

  • Time: duration, frequency, flexibility, …
  • Space: virtual, hybrid, only physical, …
  • Competences: normal everyday life socialization, specific diffuse knowledge, specialized expert knowledge, …
  • Responsibility: very low; low, high, very high.

Different care actions should be attentively analyzed and mapped using this kind of parameters. Nevertheless, intuitively, we can already say that different care activities could be delivered by different actors in different modalities.

It comes that, to imagine a new care system, we should, first of all, recognize all the potential care givers, considering them as resources: effective care resource (when they are already active) and potential care resources (when they could be activated if some conditions would be given)

Care resources. In principle, everybody can care for someone else. He/she can do it in different forms (depending on his/her expertise and time availability), but all of them require attention. In turn, given that attention is a limited resource (each person has a limit in his/hers capability to give attention), this is true also for his/her capability to care. In other word, care (both the expert and non-expert one) is a diffuse but limited resource.

Presently, care systems are built on a mix of three main resources:

  • Institutional care givers (based on professional actors)
  • Third sector and charity organizations (based on both professional and non professional actors)
  • Traditional care communities (as families, village communities, urban neighborhoods).

We know that, for different reasons, all of them are in difficulty to cope with the growing care demand. Therefore, the issue is to reshape the system in order to permit to some new potential resources to emerge and become effective resources.

Mainstream and contra trends. We have said that, in principle, everybody, depending on his/her time and expertise, could give some forms of care. But we can observe that today, in the contemporary societies, this care potential, clashes with the dominant culture and practice: a cultural attitude that, in the name of individual freedom and convenience, tends to assume a careless approach to everything and everyone (the throwaway society extended from things to human relationships). And: a mainstream practice of living that makes difficult to introduce care activities in the daily life (due to work constrains, to the evolution of families and to their being scattered in different places). Therefore, given the present structures of family and work, few people can commit to offering care, especially if this requires continuity, high responsibility and duration in time.

Nevertheless, several examples tell us that there still are several people who could and would dedicate some time/energy/attention to well defined caring activities - if and when an appropriate enabling system would permit them to do it in a easy and flexible way. This limited but diffuse caring availability is the potential resource that the socio-technical innovation should be capable to transform in an effective resource.

In other words, thanks to an appropriate socio-technical innovation, it should become possible to cultivate and harvest the limited individual caring resources of broader groups of subjects. That is, to catalyze and coordinate existing but not used care resources could be the key to overcome the care crisis of contemporary societies.

Hypothesis and vision

Hypothesis. If the close (social or institutional) organizations of the past cannot cope with the dimension and complexity of the present demand of care, they must be opened. That is: the care activities must be divided in smaller/lighter tasks, and allocated to a large number of actors, each one giving what he/she is capable/willing to give.

Vision. Open care is an ecosystem of care-related interactions, characterized by being distributed among a large number of individuals, groups and institutions, with different competence, responsibility and commitment:  from the highly specialized actors and institutions, to family members, friends and neighbors with no specific knowledge and limited time availability.

Viability

Social preconditions and enabling systems. To be viable, open care requires two main social preconditions:

  • The existence of a large number of other actors (relatives, friends, neighbors) willing to care for someone, even tough they have practical limits (in terms of time and resource availability) to the possibility of doing it.
  • The existence of dedicated and specialized actors capable to intervene when their competence are (really) needed.

Given the previous social preconditions, the open care potentialities are made real thanks to the existence of a technological and organizational system capable to catalyze diffuse resources, coordinate them and give their action the needed continuity. More precisely, this enabling system should:

  • match different demands with different offers (in terms of competence)
  • give different care actions coherence and continuity (by the point of view of the care receiver)
  • promote and support both relational and the highly effective ones (i.e. the most specialized, professional interventions).
  • be organically part of a larger systems: the ecosystem of interactions that represents what today we can refer to as a local community. 

Social innovation and open care

The open care viability is based on the existence of a whole stream of social (and socio-technical) innovation that is already moving in a similar direction. In fact, in the complexity of contemporary society we can find several promising cases (some of them are still social prototypes, someone else is already arrived to more mature stage). For instance:

  • Circles of care: groups of citizen sharing a same problem (as: diabetes, allergies, obesity, … or simply the old age) who mutually support each other, with the supervision of a team of doctors and nurses (a well-known example is the Circle in UK: http://www.participle.net/ageing ). 
  • Network of care: coordinated networks of family members, friends and neighbors, who share and coordinate their efforts to care for a person with serious problems (a well-known example is Tyze in Canada http://tyze.com )
  • Intergenerational cooperation: organizations that supports the encounter of young and elderly people mainly around the theme of collaborative living (a well-known example is Prendi a casa uno studente (Take a student at home), in Italy: http://www.meglio.milano.it/pratiche_studenti.htm )
  • Collaborative inclusion: organizations of migrants and residents collaborating to produce both migrant’s inclusion and social values, for both the migrants and the whole community (an example is:  Dine with us, in Belgium: http://dinewithus.strikingly.com )   

Considering these very diverse examples, we can observe that they present three fundamental common characters: (1) some care activities are delivered by non professional actors; (2) the overall care burden is shared between different subjects; (3) specialized interventions are asked only when they are really needed.

These examples are interesting because they give us an idea on how open care components could work. Nevertheless, in my view, they are not yet the full representation of the open care vision. To better approximate it, two steps should be done:

  • To rethink each one of these service ideas adopting the radically open approach that characterizes the Open Care research.
  • To consider the whole socio-technical ecosystem, and to improve it in order to give all of them and a multiplicity of similar ones the possibility to emerge and flourish.

Narratives of Care: Op3n Brunch in Brussels
Narratives of Care: Op3n Brunch in Brussels
After #lote5: Where do we even begin to talk about failures in care?
[Newsletter 8/3] LOTE5 Aftermath: Like free electrons we will continue the journey
Citizen Science: water microbial analyses, personal testing for DNA damage, and art for public understanding
#2

Community != research team

Ezio, this is brilliant stuff, thanks. I will be breaking down my reactions into several comments, because I need to read it several times, it is so rich. For now, I would like to refer to your discussion of A1 vs. B2 OpenCare.

The “big scary problem” we are looking at is, in my opinion, clearly A1. A1 is what the people out there are trying to do: rigging together DIY solutions to care problems. Where do I leave my children when I go to work, if state-provided daycare centers in Italy do not have capacity (Italy: the slots in daycare centers are 3% of the children of that age)? How do I keep on eye on the glucose in the bloodstream of my diabetic loved ones? Etc.

But, OpenCare (the project) is not open care (the activity). We are running a research project. What we research is B2: we reverse engineer how those spontaneous solutions came about. We do it by formulating hypotheses as to what kind of processes the opencarers out there used to invent and deploy their solutions. One hypothesis – that is, at the same time, an enabling condition for our own research activities is what I am going to call the openness hypothesis:

Community-driven care solutions correlate with open collaboration and open knowledge management practices. 

This is very clear in the hacking diabetes story. John Costik wrote code. If he had not open sourced it, the story would have ended there. But he did, so the next guy in the story, James Wedding, could reuse it and enrich the system. But now Wedding’s own code inherited Costik’s license, so it was open too, and so on. You can do that kind of stuff with proprietary knowledge and top-down permission structures, but you need moneyed organisations. I predict community-driven solutions will depend heavily on openness.

Conclusion. We study people who do A1. They will be the backbone of the OpenCare (the project) community. We (the research team) ourselves focus on B2, and hope to learn ways that we can get more A1 stuff out there by showing people how to set their process right. This is why, though A1 is the object of our study, in practice we spend much of our time on B2.

Makes sense?


#3

short reflection

I'll share a short reflection. 
 
We read your document and discussed it in our team. 
We agreee with your approach of framing the debate in the intersection between concepts even if we are not so sure to feel comfortable with the subdivision you do in page 1. 
We think in fact that it's possible to achieve part of what you describe in A1 through tools and processes you describe in B2. 
 
In our activities we experienced that an open system of activation happens especially when people are empowered with knowledge and problem-solving solutions (even complex) and are able to build bottom-up services thanks to the process of co-design and collaboration. 
 
We think that we need to talk about the design and implementation of B2 care "artefacts", for example regarding:
- material / immaterial
- simple / complex 
- low impact / high impact
- low growth rate / high growth rate
 
 

#4

Three possible situations

During LOTE5 some of us had a parallel discussion around narratives of care. We started with small listening triads where participants shared personal experiences around care. Then we had a larger free-wheeling conversation where more people got involved, including Erik.

Some observations

One conclusion (as I understand it) is that there are a lot of difficulties involved in setting the context for care. How to communicate and negotiate around the different needs, capacities, permission/willingness to get involved and constraints of both caregivers and care recipients. In part because the boundaries between the roles are fluid, especially in trying to deal with psycho-social distress involved. From a conversation that took place after LOTE5 someone mentioned “learned helplessness” and how to cope with this as a caregiver.

Coping mechanisms: Networked care

Someone mentioned one coping mechanism being to require the person asking for help to spread the burden by reaching out to more people in their caring network. I mention it because I think this is something we could look into: how a network can help the individual nodes both identify signs of trouble, collude to preventing them from happening, as well as identify and respond to calls for help. Having this option of spreading the burden of care over more people might be one way to nudge more people to engage in caring activities. This is certainly the case for me: the fear of getting entangled in relationships that I cannot get out of is a big obstacle.

Three possible situations

I found three possible cases around which we could perhaps better map/make sense of different kinds of caring activities involved.

Possibly with the intention to co-design and prototype appropriate practical/organisational settings/resources/artefacts to support care givers/recipients…

Case 1: Preventing suicides in the hacker community.

Case 2: Negotiating changing roles and needs (emotional and practical) of family members as parents slip into dementia. needs, capacities, and constraints where elderly family members are slipping into dementia

Case 3: Helping refugees deal with emotional /psychological/ social challenges during the “waiting” phases in the asylum seeking process


#5

interesting cases

Hello Nadia,

thank you for your contribution.  Any clear idea of what is intended with the case-studies?  What would you like to do around these three examples?

They appear to be interesting but I feel the urge of going deeper with them.  looking forward to the way ahead…


#6

Tried to expand/think more around this in a post

Hi :slight_smile:

During the  Op3nCare community call today (tuesdays at 16.30 CET), we discussed how to structure the Op3nCare outreach so as to create the conditions for mutual learning and shared insights relevant to everyone involved.

It could be that they are currently in a care-related situation themselves (as caregiver/reciever)…

…or someone who is not directly affected but cares, and wants to support their efforts in navigating the situation.

It could also just be someone who is professionally engaged and wants to know how they can make a meaningful contribution.

I wrote the comment above more as a mental note to not forget something ephemeral, a beginning of a thought really. A bit later I wrote a more reflective post where I try to start digging into it… https://edgeryders.eu/en/lote5-doc/after-lote5-where-do-we-even-begin-to-talk-about-failures-in


#7

Examples?

I’m sorry, I’m afraid I’m the dummy guy in the gang. I need @costantino to provide examples of what you put behind these classes: material / immaterial; simple / complex, low impact / high impact; low growth rate / high growth rate. Or is it the classification itself you wish to discuss?


#8

we’re working on this

@guy instead of giving here an impromptu example we’re approaching these in a little more structured way. Just wait a little bit!  ;)


#9

Care needs proximity and continuity

This is a feedback to @Alberto, @Costantino  and @Nadia.

The premise is that for what regards the the structure to be given to the OpenCare (the project). I will accept and respect what Alberto, and if I have well understood Costantino too, propose. That is, in Alberto’s words: “We study people who do A1. They will be the backbone of the OpenCare (the project) community. We (the research team) ourselves focus on B2, and hope to learn ways that we can get more A1 stuff out there by showing people how to set their process right. This is why, though A1 is the object of our study, in practice we spend much of our time on B2.” I cannot say that the meaning and the practical implications of this statement are crystal clear for me. But in a research it has to be like that. And I am curious.

Regarding Nadia’s first post, I agree with her when she proposes to : Having this option of spreading the burden of care over more people might be one way to nudge more people to engage in caring activities” this is only the strategy I proposed in my post. Maybe there are other strategies, but this one appers to me particularly interesting and potentially generative.

Given that, how to go on?

On my side, I can make some steps in the direction I know better, i.e. A1, leaving others to help me to find bridges with B1.  If this makes sense, the first step is to ask you, to give me some feedbacks on the other parts of my post above (they went  the A1 vs B2 options!).  I would like to have, if possible, some feedbacks on them too.

Here I will highlight some one first, and in my view crucial, point. In my original note I wrote:

The practical/organizational side of care is particularly important because care is not only exchanging information and knowledge. Care asks also for proximity and action: doing something for each other, taking time and being committed.”

Writing that I want to underline, is that care (by the points of view of who, in a given moment, need care), requires proximity and continuity. These proximity and continuity is, in a my opinion, a major difference with other, mainly information-based activities (that often can work also without them).

Therefore, if as Nadia also says, a care strategy could be the one of “spreading the burden of care over more people”, the first problem that appears is that their different bits of care activity have to be perceived, and by all means, be, from the point of view of who in that moment is the care receiver, as deliveres with continuity: the different care giver must appear as one continuous entity operating in proximity.

In my notes I indicated one case that I think could be interesting by this point of view and that I invite you to invite you see: the case of Tyze, in Canada.

In my view this case is very interesting but … it is presented as a private, and therefore, closed, network of care! What do you think?


#10

Tyze

Thanks @Ezio_Manzini. I did look up the Canadian case (Tyze). From what I see, it’s aimed at professional home care providers (hospitals etc.). In practice, if you are a company or public hospital providing home care to someone, you are only a part of the patient’s network of support. Other parts include family and possibly friends. There seems to be the idea that many decisions about treatments etc will not be made by the person in need of care (“client” in the company website’s language), but by others. Perhaps the “client” is very old and doctors and professional caregivers relate to her children. So, make a social network centered on the “client” and bring down the coordination costs of care. Their USP is here:

HOW TYZE CAN HELP YOUR BUSINESS

  • Pushing schedules and daily care documentation into clients’ Tyze networks = Reduced inbound support costs
  • Ability to extend brand to those who share in the care journey of your client = Increased brand awareness
  • Digital delivery of informational and support materials = Reduced printing costs
  • Enhanced communication and care coordination via a Tyze network = Increased customer satisfaction and retention

Tyze per se is low value added technology. Youy could do the same thing with wikis, Trello, Google Apps and whatever. They have a solid intuition behind it, though, and the people using Tyze, and how they coordinate, and who they are etc. could tell many interesting stories to OpenCare.

The meaning of my statement above are: people are already implementing A1 systems (they deliver care and they are open) by making A2 stuff (inventing and producing services etc.). We conjecture that openness in the process (2) is an enabler of A1. More precisely, we conjecture that without open processes (B2) there can be no open care (A1), but the reverse is not true. You can use open, participatory processes to design closed systems and artifacts. I guess the implication is to study closely the B2 side of things, and how openness in the process results (or not) in A1-type open care.


#11

+1

I strongly agree with @alberto

The meaning of my statement above are: people are already implementing A1 systems (they deliver care and they are open) by making A2 stuff (inventing and producing services etc.). We conjecture that openness in the process (2) is an enabler of A1. More precisely, we conjecture that without open processes (B2) there can be no open care (A1), but the reverse is not true. You can use open, participatory processes to design closed systems and artifacts. I guess the implication is to study closely the B2 side of things, and how openness in the process results (or not) in A1-type open care.  -


#12

On care and communities: Situations, Relationships, Contexts

Hi everyone,
 
I have been thinking and trying to make sense of @Ezio, @LuceChiodelliUB , @Costantino and @Alberto 's points above. Firstly I think it is a phase in which we do need to have a few more calls to find a common direcition and this early phase in the project. At th consortium meeting we did the first part of setting the foundations, but that is only the first step. We now need to tackle the actual content of the research, how we will weave this all in together...and think together really :) Last week we did have the first of the open calls and it was very helpful. We tested a software that was not really up to the job, se we will stick to google hangout from now on. Now for the "meat" in the comment:
 
Yesterday Ezio and I met in London to think together around how to proceed with our part of the research. I had been struggling to understand the distinction Ezio was making the sense in which we are exploring "Openness" in the context of care. I  think I understand better now, and think I am algined with Ezio, and away from Alberto, that it is the first which is more fruitful/interesting. For me the openness has to do with more porous interface between what is inside a cateogry or institution or practice, a place..etc and what is outside. And what happens in those situations where there is a fuzzy, or een decomposing boundary between them. Professional caregivers, vs others. Between insiders and outsiders of a community. Between users and builders of technologies.
 
Less so the collaborative, participatory nature of our research project. Which for me is given. The very fact that we are having this conversation like this, in the open, with all the difficulties of comprehension that it involves mean that we are already doing this. Seen from here, the conversation we are really trying to have is one of research curation, where to direct our gaze and why. As well as the filter through which we look at it.
 
During yesterday's conversation Ezio and I reflected on how Europe had reacted to the Paris attacks. How a small number of individuals could shut down two countries for a two days. Similarly it is remarkable that in the world's wealthiest continent, a relatively small number of refugees can destabilise the entire system. Can this  be tied to people's sense of being vulnerable, even with nice jobs etc? Can it be there is a sense of lack of social protection because of not being firmly anchored in caring communities?

But what does this term community actually mean in a contemporary, urban situation? Ezio's work at Central Saint Martins has been exploring this. His students have been looking at weaving together people and places in situations where connections are fleeting and ephemeral (not like in villages where you are stuck with one another in the same place for better or worse). Noemi, Alberto and myself have been working with related things with Edgeryders, creating a sense of place and community that remains even though the relationships which make it (who is there, who interacts with whom, what people connect over etc) are constantly changing. John, before us with other settings and constellations of people. It seems Ezio and I have arrived at the same intuition and this is where his interest in Opencare lies: 
 
How can we use design to reconcile this need for the individual to be free to choose their level of engagement in care, with the need for the care recipient to feel continuity, local anchoring and coherence design these factors into existing or new initiatives?

Can having an option to spread the care over more people nudge more people to engage in caring activities? And if so, under which conditions  does this happen or not (which are the critical factors)?

 
There are three situations within which it may be especially generative to focus our research attention:
  • Social and or health care of refugees in Germany/Europe
  • Prevention of Suicide in the hacker community
  • Helping both caregivers and care receivers in dealing with dementia in urban environments
These three areas we choose because they are situations in which the crisis of care in modernity is very  visible. I think (please forgive my fumbling approach to articulate intuition into words with my limited understanding of your areas of expertise and interest):
 
  • All three involve people in vulnerable situations where dynamics in community connections, or lack of, play a significant role. Can Guy/Alberto's network science perspective help us to make visible and understand these social flows?
  • All three also involve some interaction with the formal health and social care system, conditions as well as norms/behaviors in society at large. Can Erik and Tino's approach help us make sense of this and translating it into institutionally comprehensible language?
  • All three also involve and require a deep understanding of healing and medical practice, especially the ethical considerations for both caregivers and care recipients. Can Marco, Massimo's and other's work in the field and in the lab help us to identify and understand how to deal with these issues? In the research as well as in the intiatives themselves?
  • The city as a place and institutions is where all of these interactions and relationships live (or do not). Can Lucia and Rossana and others in the city of Milano help us understand how a city can make visible and enable promising approaches and nurturing the people who drive them?
  • Can we design interventions offer workarounds to the obstacles these intiatives, and the indivuals they attempt to support (caregivers and care recipients)? What forms could these interventions take in order to unlock more care in the different situations (artefacts, communication, services, processes, upskilling, administrative and legal hacks, policy changes and or something else? Here I think the ingenuity and very particular skillset of Costantino, Zoe and others in the weMake constellation could make a very important contribution.

Thoughts?


Strategy - WP1 and WP2 (?)
Strategy - WP1 and WP2 (?)
#13

What is OpenCare about? A tentative wrapup of this thread

Ok guys, here’s what I understood:

  • OpenCare studies community-driven care services. This means "activities of giving care to people that need it, and that are open to anyone's participation" (Ezio's A1). For example: the Helliniko Community Clinic.
  • Our attention is on how these things come into being. This means we are focusing on the design choices of their protagonists and to the emergent social dynamics driving them (Ezio's B2). For example, we consider how the design move of not incorporating enabled the Helliniko Community Clinic to work like it does. This is all set against an institutional backdrop. Example: liability for doctors in Greece is attached to the doctors themselves, whereas in Sweden it is attached to the hospitals.
  • This is all a bit too abstract to prompt an online conversation, so we start by looking at community driven care activities in three domains: social/health care to refugees; suicide prevention; and treatment of dementia (more). 

Is that clearer now? Do you all agree? @Ezio_Manzini, I am particularly interested in your say. Here’s why: at this point of my thinking, I am seeing design as the main discipline from which to cast our aspirational high-impact publication. I do not think anymore we (i.e. “society”) can “solve” the crisis in health and social care, like a mathematician would be tempted to do. Nor do I think we can “optmise” for it – this is how an economist would go about it. But I do think we can make a move towards higher grounds in the fitness landscape; and moves is what designers do.

But, if you (or the others) are not convinced, then it’s back to the drawing board. I agree with you that we need to be on the same page here.


#14

comments on two domains

hi Alberto,

we agree on you summary,

we feedbacked Nadia on the other thread regarding the domains of action

https://edgeryders.eu/en/comment/22032#comment-22032

best

Zoe