OpenCare actionables: an impromptu workshop at CERN

Workspaces OpenCare
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We had an impromptu workshop at CERN IdeaSquare, with @markomanka, Massimo Mercuri from SCIMPULSE and myself, with input from some IdeaSquare staff. We came up with a few actionables as we kick OpenCare into gear, to be executed after we sign the Grant Agreement but other than that as soon as possible. This is a wiki, edit as needed.

We identified two major success metrics (“epic goals”) for OpenCare:

  1. A high impact publication on community-driven care services. Think Wikinomics, but for care. Wikinomics was the output of a large research project with generous funding; now we have a similar project in our hands, and should aim for the same kind of result or better – though of course we may fail.
  2. The spinoff of a viable company that produces community-driven care services. 

With those in mind, we moved to identify small, realistic actionable steps that would bring us closer to those goals. At the end of each actionable we tentatively list the people in charge: if want to assign yourself to one or more of them, just add your name. They are:

  1. Compile a list of people in your personal network that can help with OpenCare. These can be care professionals; scholars; people that have experience of using care services, either by receiving treatment or by being family or friends to people that received treatment; makers; data people; simply people who care. [everyone]
  2. Recruit journalists-storytellers to "seed" the OpenCare conversation with stories and experiences from community-driven care services [@markomanka and SCIMPULSE].
  3. Make alliances in the open medical data movement [@Alberto, @markomanka].
  4. The IdeaSquare space and organisation are very open to proposals. Maybe we could think of one or more OpenCare events to happen there? Are there other collaboration opportunities? [@markomanka, @Massimo and @Salvo_Cognetti, can you provide some ideas?]
  5. At LOTE5: schedule a session on Healthonomics. Is the medical-industrial complex hackable? What do we know about it? This is to be a high-level problem description, probably videoed, which we can use during OpenCare as a primer for people who want to be active in the community [@markomanka + @Lakomaa + external experts: Alberto suggests Simona Ferlini]. 
  6. At LOTE5: schedule a session on how to make an acceptable prototype of a community-driven care service. Supposing a care service is some kind of co-living: how do you prototype that within the time and budget constraints of OpenCare? What is the minimum viable prototype? We clearly cannot procure a purpose-built facility and put 50 people in it for a year! [Ezio Manzini, contacted by Alberto].
  7. Important: @markomanka has spotted a call that might feed into the nascent OpenCare ecosystem. Deadline: September 2016. Marco, please add relevant link and let's all remember this ten months from now. smiley

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It’s starting…

Wow this is moving faster than what I expected, thanks for prompting to dos at this very early stage.

Re: LOTE5 - With @ireinga we discussed new forms of collectives and coops as a theme that is transversal to both care and communities.

Maybe an idea to look for partners early in the project and assemble a small initial community is to host pre-events in the runup to Lote, in several towns in Europe - very low cost, basically gatherings at someone’s place where people in the field are invited. This would also help those of us in the project who don’t know yet much about specialized care to even use proper language in a conversation.

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Seeding conversation

@markomanka there are a couple of people in Berlin I have worked with and would trust to do a good job on this: http://bold-futures.com/en they enjoy doing non-black/white things that make you think a bit.

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Hmmm… CERN, huh?

I imagine they were a tad different from the usual crowd. :slight_smile: Or did they not draw them from the (for them) usual pool of people? I’ve been around particle accelerators a lil bit, so if you have time for a community call like back and forth. I’d like to hear how it was and perhaps give a pointer here or there if I can. @Nadia and @ireinga, if you have some time after lunch where mental capacity is low anyway, we can have a chat on skype, and I can also throw parts of my list of people at you.

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Response sent

I copy it below:

Dear Loretta, dear Marianne, as per your request.

  1. The change of coordinator is due to Edgeryders' young age. We are a startup; incorporated in May 2013, we have closed accounts only once, for financial year 2013-2014, and that as a dormant company. We started trading in financial year 2014-2015; based on our provisional balance we would meet the EC's requirement for financial validation, but our accountant told us they would not be abel to close the accounts and have them audited in time. According to UK law, we have time until the end of January 2016 to do file closed accounts. Given the common history and mutual trust we share with CNRS and Guy in particular, we proposed that they step in. He accepted, provided that Edgeryders continues to take responsibility for the technical part of the project.
  2. Consequently, we proceeded as follows. We transferred the whole of task 6.1 (admin/financial management) from Edgeryders to CNRS; we also transferred 50% of task 6.2 (Quality assessment, reporting and consortium meetings) from Edgeryders to CNRS. Admin and secretariat will now rest with CNRS, with Guy and myself sharing the task of actually driving the project, leading on reporting, quality and consortium management. 
  3. On ethics, here are some considerations based on the ethics evaluation report.

1) Detailed information must be provided on the informed consent procedures that will be implemented.

The informed consent will differ for new and existing users of the platform on which OpenCare will be hosted.

  • For new users, a run-in phase will demonstrate the data collection and handling procedures in a mock-up session, as part of the introduction/instruction to the site. A questionnaire will evaluate their understanding of the rules and dynamics, and a (printable) document will be offered for electronic signature of informed consent at the end of the procedure.

  • For users who already have logged in before the OpenCare (for any other purposes), the run-in demo will be still offered as an option. The consent procedure will nevertheless mostly rely on the explicit form that is offered at the end of the run-in to the new comers, which will state in explicit and simple terms the risks associated with sharing the data, what the data would be used for, and what procedures would be in place to notify users of eventual changes of policy (in adaptation to new legal rules, as instance) and of eventual accidents.

Failure to complete the procedure, will prevent users to join the community.

2) Copies of ethical approvals for the collection of personal data by the competent University Data Protection Officer / National Data Protection authority must be submitted.

This is not always going to be possible. In a previous CAPS project (called CATALYST) we discovered that many national data protection authority straight out refuse to “clear” any procedure. They basically say: we do not certify your process. You go ahead and do it, if we find you are doing it wrong, then we will punish you. This is the case in Italy and Germany for example. In that project, the only partners that could provide an “all clear” certification were universities that happened to have an internal Ethics board, but even they would refuse to certify other partners. We ended up writing to the Commission to inform them of the situation and appointing advisors to provide us with an ethical checklist. Based on this experience, we designed our proposal to follow in that path.

3) Detailed information must be provided on the procedures that will be implemented for data collection, storage, protection, retention and destruction and confirmation that they comply with national and EU legislation.

Data will mostly be gathered through semantic analysis of the contents shared by users on the discussion forums, and collaboration spaces made available by the platform, and by collection of metadata relating to session loggings, and interaction mapping. This data will be stored on a server in Germany, protected by strong encryption and by the strongest data protection law in Europe. It is unclear, as of yet, whether the community of users itself will express the need to upload and share health or medical records, images, or other medical sensitive data. Should this need emerge, it will be up to WP6, working with the advisory board and in co-construction with the users themselves to design and document the handling procedures for these data. We can envision that the model for such a solution could be the Swiss cooperative health data bank (https://www.healthbank.coop).

Retention of data will last for as long as the project existence, unless a user will withdraw from the platform explicitly requesting data destruction.

How to deal with the metadata relevant to users’ activity and interaction is not as straightforward, as this data never belong to a single user. The current standard in industry in EU is metadata retention, and reusability. The consortium will join the platforms of discussion over the "right to be forgotten” to ensure alignment to gold-standards, rather than just minimal requested practices.

4) In case of data not publicly available, relevant authorisations must be provided.

We do not understand this statement. To have an impact in the context of a collective intelligence process, every information needs to be publicly available in the sense of being accessible on the web.

Hope that’s satisfactory. Best,

A.

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Why did this thread show up ?

Dear Lakomaa,

Got this: "you have been mentioned by Massimo on Sun, 2016-05-01 10:04 in this node:

“OpenCare actionables: an impromptu workshop at CERN”

You can view the mention and react to it by clicking on the link above.

–

I can’t  however see any posts that are less than 7 months old. How do I find the post where Massimo tagged me “, 2016-05-01”?

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Because it is a wiki, and Massimo edited it

… and he inserted a mention to you in the text of the wiki :slight_smile: .This happened recently, 11 days ago.