Op3n Hangout #2: How do we navigate the tension between asking for permission and asking for forgiveness?

Workspaces OpenCare
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During today’s call  @johncoate , @Natalia_Skoczylas , @phm and I had the first real project co-design session. A summary of what was discussed [please add what I have missed]:

  • We discussed three cases:
    • The Diabetes implant: What was an illegal hack in 2012, is now a solution that is available for others. How did this happen? What kind of legal hoops did they have to jump through?
    • Im many EU countries the welfare infrastructure was designed for populations with planned groth. With more refugees arriving you both have an increase in number of people to care for, and different kinds of needs which is being framed as the source of " chaos in the system". Perhaps it would make sense to look at how health- and social care is being managed both in the camps and temporary receoption centres, as well as in the mainstream healthcare providers.
    • Is there a distincting between the NHS overall (long term) and the temporary refugee situation:  Is it just a question of money, or are/were there some things that can be improved? How does a clinic in Brixton cope with a situation in which you have five hundred people who have just walked to Calais and have broken feet? In addition to the Epidemological situation.
    • We need raw data about how the healthcare situation is currently being managed, but from first hand sources...ie go out and ask people on the ground. How many doctors, nurses and others are currently active in caring for the new arrivals? Where are the resources coming from, is it mainly charities? Is this information already out there and is anyone aggregating information about the different intiatives providing care services to people?

Some early “conclusions”:

  • When it comes to DIY solutions to health- and social care problems, there is a key tension between asking for permission and asking for forgiveness. Who/how can and should we convene around finding legal/administrative hacks for existing DIY solutions to health- and social care problems?
  • An obvious path towards achieiving impact is to find, acknowledge and draw support towards people who already are doing important work. This has to happen online on the edgeryders.eu platform in order for us to fullfull our obligations and to stay true to our mission. Does it make sense to run the project in 3-month cycles consisting of the following steps?
    • People reach out to little known but promising initiatives and ask them about their work and post the documentation on platform where we can help edit them into really compelling stories. These stories are designed as informative case studies with a specific call for action from the broader community.
    • We share their stories online and engage the internet in making sense of the challenges they face, as well as identifying fixes/hacks/solutions/new projects. Part of this is sharing specifications, doing requirements engineering and the necessary background research to determine viability of different proposals.
    • We build a number of small, focused events in which people existing intiatives with designing and build the identified fixes/hacks/solutions and projects. Kind of like the workshop on Collaborative Inclusion...but taking place over a couple of days, in a hacker or makerspace, where you leave having built something that works. Two projects to begin with: BBC Frontline Documentary on Two UK Doctors Helping Refugees | Dutch Volunteer Turns Refugee Boats and Life Jackets Into Backpacks .
    • BBC Frontline Documentary on Two UK Doctors Helping Refugees - See more at: https://edgeryders.eu/en/opencare/bbc-frontline-documentary-on-two-uk-doctors-helping-refugees#comment-21988
    • BBC Frontline Documentary on Two UK Doctors Helping Refugees - See more at: https://edgeryders.eu/en/opencare/bbc-frontline-documentary-on-two-uk-doctors-helping-refugees#comment-21988   
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Hangout ideas

Hangout was good. Started in ‘appear.in’ but it was really laggy so we moved to Google hangouts.

My feeling was that I’d be more likely to put effort into the open care thing if I believed it would come up with concrete results (e.g. helping people / reducing suffering) , if it was just making a big document that got read and largely ignored, I’d feel it was a waste of time, and I think everyone will share this feeling.

I think Nadia agreed, and said that we could/should try to get some concrete change from this project (as well as fulfilling the minimum requirements of providing the research / ideas / documentation.)

For the research part, I thought the only way to actually know what is going on would be to go to places where health care is needed, and talk to people first hand. Get a feel for their situation. (Rather that trusting info sources from others). So I think we could get people to visit anywhere that seems like it might lack good health care and talk to people in need, and the people giving the care. e.g. Refugee camps, impoverished inner city areas where there are too many people and not enough doctors / hospitals. Rural areas where it’s hard for people to get health care. Go to places, talk to people get first hand accounts, do surveys and get numbers.

For stats / raw data , I’d want to know:

  • How many doctors/clinics/hospitals there are in the area.

  • How the health care is funded: (is it governments paying with taxes? Charities? The communities themselves dealing with the problems, without outside help?)

  • How do people get to the health care when they need it? distance? cost?

  • How long do they have to wait? satisfaction with the care they receive?

  • How many people need care and are not getting it?

etc.

Someone (forgot name) asked an important question: Does our client (client?) care about the situation in America, or because it’s EU money do they not care about far away places, with maybe completely different situations / cultures?

For the UK, an important question i would like answered is: ‘how good is the NHS?’ Are they doing the right thing, and only limited by lack of money, Or could their methods / efficiency be improved? If so, how? How could they improve? Better software / organisation? a change in culture?

(I know they wasted a ton of money on software, cos they gave money to some lame suit and tie company instead of getting real hackers that smoke weed. But I guess that’s really a separate issue.)

To me, the most exciting idea would be to get hackers involved in health care. Healing people is (often / can be) easy when you apply creativity and radical tech and hacker problem solving mentality.

I think an important question raised was ‘is the legal side preventing this from happening more? Or will it get in our way?’

Maybe hackers are put off operating on people cos they might get sued if it goes wrong? Or ‘pretending’ to be a dentist is illegal and only people with official training should be allowed to mess with teeth?

(Issues with stuff like law getting in the way of common sense hacking with pacemakers cos of stupid patent laws / lack of open software ?)

Nadia said we can find people with expert legal knowledge, and see what the situation is.

(Common wisdom is that dentistry is very difficult and takes 7 years training, or whatever. I can see why this makes sense. It is very difficult and can get very bad results if it goes wrong, so obviously ‘amateurs’ should not hack teeth.

However, I actually think this is not as obvious as some may think. When talking about starting a radical hacker community on an island, one of the points that came up, is can we really mange without any outside help? What if someone has tooth problems, should we consider this when deciding on location? I said ‘we can’t do dentistry, it’s too hard’ but some in our crew actually thought it was not beyond the realms of possibility. He would have to spend a few hours reading, and time making specialised equipment (drills, maybe X-ray machine, etc) and make our own morphine (actually that’s the easy bit, but general anaesthetic can be tricky/dangerous). So anyway, I’m not suggesting it will be common place in the near future for people to get their teeth fixed at hackerspaces. Just wanted to point our that genius hackers can do amazing / crazy high tech things if they have the time. Nothing is beyond us. So I imagine it could be very feasible for hackers to help with more simple aspects of health care, and there is no reason that they should not be allowed to do so. )

Also mentioned: hackers making rucksacks for refugees.

What about shelters for homeless? I’ve always been keen on squatting, using tech knowhow to get abandoned buildings into liveable states.

This is not directly health care, but you can argue prevention is better than needing to cure. E.g. if people are living on the streets or extreme poverty where they can’t keep warm and dry, and wash, of course they are more like to get sick and have many health problems.

So the thing that excites me the most is getting hackers involved in radical change like this.

Nadia said that actually getting positive change was something we could and should be doing (even though technically we don’t have to DO anything, just provide research / ideas).

So she suggested that I could help organise an event in London, where we get hackers together, and see what we can do.

So I think a big event with lots of hackers would be good.

Nadia mentioned planing to do something in London, and in June. Not sure why London (just cos I was keen to help, and i know London?) or were you thinking of doing something in London anyway? and why June? dunno. but anyway, that seems feasible.

The minimum i would expect from this, is just lots of brainstorming / ideas by smart hackers that we can document and add to the report.

The best case, would be if something more long term came out of it, and they ended up improving health care in London.

London hackspace would be the logical place to host it (and I know the members and trustees very well).

So if you guys think that sounds like it’s worth doing, I will contact them and see what they feel and if there is any support / excitement about the idea. They would probably allow the space to be used for free, but if we wanted a lot of people and for more than one day, it could be a nice gesture to offer to donate some money from the grant for use of the space. (it’s entirely non-profit and run by members) (they did look into charity status, but decided against it)

Normally it’s members only, but they will make exceptions for special events (and a lot of the people interested would be members anyway).

I know one or two members that are involved in edgeryders, so I would also contact them.

What do you think?

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Another location idea

EMF is August 5th - 7th 2016, Guildford. https://www.emfcamp.org/

We could do something there. @billy-smith @darren

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EMF

Just caught this @phm - don’t know if @ pinging was working correctly when you posted?

I’ve been considering emfcamp.  I’m part of a mobile hackspace/workshop project and back in January made the proposal to do something with our workshop at EMF, but nobody else appeared interested.

I’ve been thinking about doing some kind of fantastical area at an event for a while, something inspired by madmax, solarpunk and Nomadic Eco Villages : Eric Hunting : Free Download, Borrow, and Streaming : Internet Archive - not quite sure how/if that would fit in with OpenCare, although I guess it could?

pinging @Billy_Smith in the hope that the pings are working again :slight_smile:

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Hey Darren

I’ll be going to EMF.

Booked my tickets a few weeks back.

They’re still got workshop spaces open.

You should definitely bring your biochar rocket-stove. Ian, the blacksmith who’s running the open forge sessions, would be interested, as well as a few others i know.

Also have a look at Wevolver.com. They’re tring to be a Github for Open Source HardWare. I’m hosting one of my projects there, https://www.wevolver.com/billy.smith/reservoir-planters/main/description/

Another project that i’ve been helping out with can be found here, http://r-urban-wick.net/events/learn-to-build-an-anaerobic-digester

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When the left gets funded

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On the road

Peter thanks for taking the time to post your nots above. Would like to really read and reply to your questions, share reflections etc but am on the road till Sunday. Will post in soon

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