Notes from the #lote4 session on The Future of Care in the Hands of Hackers?

Notes from session led by @Rémy and  @Ben.
 
1- open discussion
2- Mapping existing projects
 
Statements:
"We've made a world which we are missing/removed part of family unit and exported it to the market" (i.e childcare, counseling) 
 
  • Major crisis - who looks after the kids - historically child rearing = 3 generations 
  • Isolation is a massive issue that compacts other issues - Social isolation can be a killer , equal to smoking, loneliness is key 
Issues:
  • Some services are not covered by healthcare (All commercial options for fragile bones are expensive) 
  • Important to note that pensions are already casino 
  • External apparatus vs international apparatus = wrong focus  
  • Problem to identify elderly needs; as they don't always express them
  • Sometimes people are positively "attacked" by the system: too much medication, etc
  • Duty of care. 
Questions:
  • How do we think about care from a cultural perspective ?
  • What can elders offer for younger/hackers people? 
  • We can do X but we need Y - barters problems - Land 4 Care 
  • How do you identify who is relevant? Associations / Coops / Working Groups / Orgs
  • How do we ensure an equal share of disabled exist in each coop?
  • Tiers of coops - high and low risks coops - how to manage? 
 
Organisational / Technical Issues:
  • Get things online as grouped key challenges - who is available where is slack
  • Starting from personal issue, collating existing resource together for all issues( open source platform)
  • How to identify unlock capacity of older individuals - not "needs"
  • How do you identify beneficiaries? 
  • Identify old mentors of large networks 
  • The Farm was bankrupted by medical costs, after 14 years of communal living. 
 
Country observations
  • Sweden has already a good level of care+security
  • Turkey has a significant issue of elderly infrastructure
  • UK and north of Spain has experience in health-clubs, where people lose weight, cook and walk together etc
  • Japan has experience with currency for university students, where they do stuff for elders
 
Existing Projects 
  • FuturGov style projects: Casserole club (UK) - Shared cooking, extra meals +social opportunities 
  • (Common) Libraries as a cross roads for all generations
  • INFO+guidance needed in a library context (UK), 2,5 millions enquiries 
  • P2P foundation : working w/ Goteo to create coop equiv
  • Social mirror *might* become a CIC :> looking to have people to help and work on it 
  • National lottery: open funding to digital. soon. April 
  • Help ! need for 75 hackers
  • Grey Panthers - US based old people's  political action group. The name references the Black Panthers black power movement.
  • Local  currency for helping elderly, can be used to rent council property etc 
  • Squalo, matera accessibility - focused website creating website for mutual exchange, promote Os solution VS big companies products. 
  • Services: people helping each other already exist on a small scale
  • Vacuum Cleaner - turned his house into a care home for his own struggle. 
  • runtastic is an android app that keeps track of your walking.
 
IDEAS (and/or solutions) 
  • Pairing schemes, connecting across ages 
  • Adopt a hacker
  • Use social entrepreneurs to draw money in vc money for social good 
  • care hack manifesto - indie tech manifesto
  • Create a front door for all enquiries clustering around challenges 
  • Libraries used as a production facility for infra elderly
  • Reverse the notion of elderly care as economic issue - convert to excess capacity 
  • Are there any mobility open source projects? 
  • Intergenerational - Elderly teach the young
  • Locality based social systems
  • Hacker care home
  • Reverse engineer much of medical gear, as is being done with prosthetics, or by fixing ebola-suits to make them safer, more comfortable, and safer to unwear
  • Your biography online (as trojan horse for building digital literacy) 
  • Vinay- google case. asperger sydrome clever victims become high valuable ressource for Google.  
  • Across-country (elder or not) networks. They'd provide knowledge about previous exposure, what worked, etc. Much of "anthropology" is summarised as "listen first".
  • Collecting information on food and health, hard to do, but will be important with intestinal data-gathering capsules (video and sample-taking), and biometrics in general, and also simple things like "walk and talk" as predictors of medium-term functionality and need for extra care
  • Focus on issues (specific or broad) so that different people may gather: people in need, family, professionals, others. Make it easy to do that.
 
Sunday session 
Working groups 
 
Potential Objectives: 
Creating the opportunity to get past first step in massive positive cascade
Identify old mentors of large networks
Use the manifesto to catalyse existing initiatives around the document.  Space for discussion
What success looks like
"A bunch of geezers with a bunch of youngsters living under the same roof making their life better with open source tech"? (Vinay) – Probably too narrow.
"A set of principles to gauge the very many existing projects against." (Gaia) – Sounds useful, especially since every health care service and their horse are doing projects around this, and there is a need to sort the wheat from the chaff.
 
Example template for manifesto: https://hive.as.uky.edu/manifesto (template a bit on the corporate side, speaking Valley talk. Not necessarily a bad thing.)
Other example, more hacker/political: https://www.ifixit.com/Manifesto
 
Session CONCLUSION
Alberto : Funding would be easy for projects in ehealth etc... 
Arduino is mounting an offensive against IOT. fighting it by making it Open source. DIY domotics. 
If interested in open source technology based solution for healthcare ask alberto.. Massimo.
 
 
The #HackCare Manifesto / The #HackHealth Manifesto
 
Mission:  
Asset map for old peoples capabilities (or receivers of 'care'). 
Reorientating 'deficit' to asset. 
"Nothing about me without me" ("Hey, we are old people – in a few decades at most!")
Future of care for hackers - developing a meaningful framing for our collective future - pensions, mortgages, disabilities, impaired health. 
"We will help you to want to live" - Phases of transition. (This is when you need reminding that you want to live) - Creating a sense of purpose. 
"Accepting care as an exchange. Nothing is lost if we drop old people from the picture and make it more general." (Leo)
"Any contribution, however token, is valued and allows entry in the system. People can then accept care, and pride does not burn." (Kass)
Generate and highlight the possibility and role of open-source within care. 
Defining Characteristic: Creating an opportunity for participation. 
How do you define the legitimacy of someone requiring care? - What's the model. 
"Extreme care is the most expensive. A disproportionate part of total cost is used up by a small share of people with really severe conditions (for some value of conditions)." (Gaia)
Create a centre of gravity within existing communities which enables 'care', 'health' and 'well being' to be an open topic of discussion and consideration. 
Establish a protocol that can be deployed into communities that allows for a long term, community wide consideration of health and caring. 
Build a bridge between generations, governed by interdependency. 
Create a context/service in which the young can be exposed to wisdom. 
Ensure that we no longer allow for the waste of human potential. 
Do away with the social construction of the qualities of age. 
Collate projects and initiatives, so to avoid 
 
Move existing welfare state healthcare from a perceived deficit model to a post-scarcity model.
 
Vision (should be expressed in Axioms): 
Value received on both sides. 
Recognise the limits of what is possible in giving and exchanging care, but seek at all moments to decentralise and distribute 'caring'(?) 
Developing a post-scarcity model for care. 
 
Strategy: 
Possible headings: 
  • Positive Asset Mapping - Identify Excess Capacity 
  • Asset-based approach: start from what you have, positive approach. Risks of neo-liberal stance ("You're good, you still have one working toe.") (Vinay)
  • Deficit-based approach: start from what is missing, negative approach
  • Asset vs. Deficit:
image
 
image
  • Engage existing allies
  • Develop and Fork Patterns 
 
-> is there anything of use in this here blog synthesising everything I know about asset-based and evidenced-based community dev http://www.rsablogs.org.uk/2014/social-economy/54321-jumpstarting-power-create/
 
 
Goals (Specific, Measurable, Attainable, Reliable, Timely):
 
Values and Behaviour:
  • interaction between equals
 
We Value:
 
Meet two challenges:
  • What are the existing projects out there that can improve current conditions?  
 
Going Forward:

 

 
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Comments

Of course I missed it.

Noemi's picture

Shoot, I had to skip it during Lote4, and reading the above surely makes me feel sorry. Thanks for uploading the documentation!

Anyone knows if there's been follow up to the session? The manifesto in particular is something to chew on.. 

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:)

Ben's picture
The session came about as a result of a conversation that's been going on for quite some time, between London, Berlin and matera. During lote4 we decided to take a much more exploratory approach despite having refined our ideas somewhat prior, this seemed though very conducive and generative for the sessions we held. Since then I've been exploring a few opportunities and trying to refine the approach\concept that makes most sense - it turns out that there is a lot of funding available for this sort of work, but for good reason, because its really hard, particularly emotionally. Of the workshops I've been running offline around 'infrastructure space' since, although not specifically on this subject its come up a lot and a few things have emerged which i will post about in the near future. There's a rough plan to finish and publish the manifesto in the new year! There's also plans afoot for a thoughtmenu with over 60s / our grand parents!
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