Guide for building the OpenCare online community

The purpose of this document is to help OpenCare project team and community members learn and master basic practices to help build a global network around the project. We outline core processes and tools deployed via and encourage anyone to step up and use these resources.

Table of Contents

Main OpenCare communication channels

We maintain two separate but linked spaces on the web:

A Research Workspace:

  • displays basic information about Open Care as an EU funded project;
  • contains all team communication threaded discussions
  • interactive, live feed of the project
  • designed in the spirit of openness (anyone can come in and share content) and "working out loud" (format which the team is committed to)

A Community space:

  • for community members, old and new people or anyone wishing to understand more about how to participate in the project
  • highly curated information about the project
  • designed to explain to the broader community what opportunities the project provides
  • redirects visitors to a space on and is also easily accesible from the main menu of the website (see it on the upper left side)

Workspace: how to navigate it

A proposed routine for quickly finding relevant info by project partners:

  • Check your email notifications from If something needs your immediate attention, you were probably mentioned in a comment or were assigned a task by the team. The email title will signal this.
  • On the platform, start from the workspace. Filter content by clicking on "Posts", "Wikis", "Tasks" etc. so you only see those.

A proposed routine for making sure others see your content:

  • Use the platform mentions in your texts - "@username" (start typing and it should autocomplete. The autocomplete choices show up in red below the edit window). Mentions send an email notification to the person being mentioned, making sure she sees your content. 
  • To make it easier to find content in the working group, consider naming your new posts using the following structure (it makes it easier to find content by using the search form on Edgeryders):

    [tag: Meta | Comms | Logistics | Events | Consortium | Reporting | Urgent etc] + title of the post

Community space: how to onboard partners, collaborators, members

The simplest way is to point people to the Community site.

If someone learns about the project and lands on Edgeryders, there are several ways in, described in the How To Participate page: they can sign up on our mailing list, create a user account on the platform and follow or produce content to become involved. For people who prefer voice interaction, we have Meetups and a weekly Community Call through VOIP. All these are listed on the Meetups page.

All people who are signed up on become community members and agree to the Edgeryders official user, privacy and content licensing policy, made visible to them upon signup. Members can post on the website, a point at which they are officially welcomed by community managers. @Noemi is primarily in charge of welcoming most users as they sign up and answer any questions they might have about using the space or different projects.

OpenCare is building its own consent funnel for participation. This is being developed by ScImpulse.

If you want to learn about Edgeryders community management practices, would like to share the work or become a community manager yourself join us here.

However, most Open Care project partners are someone’s contact point for the project i.e. when we speak about OpenCare in public presentations, events, open consortium meetings, or when simply sharing information online. Open Care will be different things to different people - it will be general i.e. a way to come together around new care systems; or specific i.e. research looking into dementia and supporting the carers. And so on. It’s your own responsibility to gauge potential interest from someone and point them to relevant information.

If there isn’t relevant information available online, don’t wait for others to do it! Go ahead and set up a post proposing a copy to be added to the Community base and admins will do it.

Challenges and stories: the main collective intelligence vehicle

As we are spread all over the world, we meet and interact with Open Care community members here online, more than in any other settings. Publishing posts, reading each other and leaving comments to one another’s contributions is how most of the interaction happens.

Content in OpenCare in shared in response to challenges. Challenges are assignments: we describe a problem (for example: what is your experience of giving and receiving care?) and ask the community to respond.

Good practice that you can adopt as much and as often as possible:

Submitting stories

Only users who have created an account on Edgeryders and are logged in with their username and password can submit stories.

When submitting a story, the user is taken through a number of steps in order to clarify which challenge the story is answering, what personal question is the person trying to figure out, who would be an audience that they prefer, and what general topics they want to file the story under. The editing interface makes it possible to input text, links, to upload images or to embed video or audio files (using the HTML source).

When users create a new piece of content, the other community members who have contributed previously in OpenCare will receive an email notification. Same is true when someone comments other stories.

Euro English as language

For a project with such a strong social networking element, it is absolutely essential that people can interact without mediation nor delay: having someone translate everything we post would be not only impossibly expensive: it would dampen interaction and feedback, making the Open experience quite miserable. To get around this problem, we have agreed to encode some rules in the social bargain of Open Care.

These are:

  • you are welcome to write in your own language. People can always get the gist of what you are writing by running it through Google Translate; however, we encourage you to write in Euro English, the lingua franca the majority of young Europeans use when they move about. I wrote Euro English, and I specifically don't mean the Queen's English: the former is an inclusive, connecting language that most youth speak enough to communicate, the latter is just another language, with its own solid grammar, pronunciation niceties and idiosyncrasies. There are many more people that speak Euro English, than people who speak the Queen's English.
  • Community members agree to be tolerant of each other's grammar or spelling mistakes. No one is allowed to look down at anyone else for this. We are not stupid or under-educated, we are just writing in a foreign language. Our effort to communicate deserves respect.
  • Community members who are native speakers of English are kindly requested to keep in mind they are part of a global community, and make their own effort to write in a simple, clear manner. 

Right to privacy and anonymity

Given the sensitivity of a topic like care, we are encouraging members to feel confortable writing online, but we are aware that this may not be the case for everyone. All our team members are aware of this setback and make it possible for people to submit materials or write their personal stories in two ways: 1) creating a user profile which is not linked in any way to their real identity and uploading content from that account or 2) emailing stories and have one of the Open Care curators upload for them.

Research data

All written content submitted in the OpenCare online spaces will be aggregated, coded and analysed by researchers and in agreement with our Data Strategy. For details about the Open Care research, see our original proposal available here (pp.18-19).

Other Online engagement tools and practices


Meetups are offline or offline activities and events where community gets together. OpenCare partners and members are encouraged to run OpenCare activities and announce them as Meetups on the Community Space. They can be as small as a presentation at an conference, or a community Meet and Greet.

Partners are already receiving invitations to tell about OpenCare in conferences, university lectures, hackathons etc. Our criterion for accepting or rejecting these invitations is their potential for engagement. We do not recommend accepting last-minute invitations: allow a minimum of two weeks lead time. This way, all of us involved can spread the news that someone in our team is going to be presenting in venue X on day Y, and reach out to others who might join you.

Please post all your intended activities (online/offline, public meetings, conferences etc) as events in the Community space:

  1. Click here.

  2. Enter the information you have prepared for your session. Make sure you also include an image to act as a logo, it will make your event look better on the page. Logos for events are available here.

  3. Enter your preferred date and time in the relevant fields.

  4. Click Save, you’re all set. The event will be listed on the Op3nCare Meetups page.

Now the next step is to build interest and discussion around your event, email and share the link in your own networks. Use #op3ncare so we can help spread it through the Op3nCare social media accounts.


Hangouts are weekly, online and open events where anyone can join.

As of April 2016, hangouts happen every Monday at 4:30 PM CET. We are still looking for that perfect open source videoconferencing solution, so check the Events page and follow the instructions there.

Also known as Op3nCare community calls, they serve two purposes at the same time: team coordination and welcoming new people. If you’re attending the next, make sure to set the agenda by leaving comments to them. Every weeks call will be listed on the Op3n Meetups page.

If you would like a call exceptionally scheduled, feel free to propose it, write, upload it, and run it (see Communicating your events above).

If you are running an activity in Open Care that needs a separate community event, feel free to propose it, write it, and run it (see Meetups section above).

Working out loud

The OpenCare research team is committed to publishing regular public posts to help community members keep track of what is going on and be able to plug in at any time. Posts in the OpenCare workgroup marked as such in their title (e.g. [Working out loud] Name of post). They are summaries of what needs your attention every 2 weeks, feeding in and out of the community calls. Written by @Noemi and other community managers (an example here).

Mailing lists

An OpenCare list of supporters and interested people is growing. We send curated content collaborated by community to the list members no more than once a month. Sign up here.

If you want to include something in it, get in touch with Noemi.

Social media channels

Communication in Open Care is not centralized, it is distributed among all consortium partners, so we are using the channels collectively. To get access to the login info, get in touch with Nadia.

Shared project identity visuals, cover photos, thumbnail, partners logos etc are listed publicly here. Feel free to use, modify, re-purpose them as you wish (see License below).

Shared documentation

A live repository of project updates is the workspace:OpenCare Research.

A repository of project documentation (including Consortium Agreement), copy, materials, photos, cover pages and other miscellaneous is located in the OpenCare shared google drive (for Consortium Partners). Make sure if you have new ones to upload them there as well. They become common resource for Open Care community.


The opinions expressed in this website are the responsibility of their author(s) and do not necessarily reflect the official policy of Edgeryders as a company, its directors, members or the organisations cooperating with it.


OpenCare by OpenCare Consortium is licensed under a Creative Commons Attribution 4.0 International License.

April 15th - another deadline coming

Hi everyone,

We have another deadline (upcoming deliverable) :

WP2, Deliverable 2.1: Deployed, tested OpenCare online space on the production server

What we need to submit : presentation of the platform (structure, motives, scientfic outcomes) + links to the Op3nCare workspaces

When: by April 15th (if possible). We are already late - just let me know if this date sounds realistic or not.

Why late?

The online space is live: what other work you are seeing being done is tweaks. Unless I am completely missing something?

Presentation of the platform: Do you have a template or questions we need to answer more specifically? It will not take long to do this and certainly before April 15 should not be a problem.


We are late according to the EC, since the platform was planned in the Annex 1 of the GA to be fully operational by the end of February and we should have submitted information by that time.

I think the delay may be acceptable by the EC, since we can explain in our reports that the platform was mainly ready in due time, that edgeryders introduced it during the kick-off, with extra adjustments related to users’ comments/experiences being carried out in March.

Unfortunately, I don’t have any specific template nor guidelines about the way we should present the plateform, the content is free.

We could prepare some short presentation (1 to 2 pages) using these themes: structure, motives, scientfic outcomes.

It could then relate to the Description of Action and could be used again for public dissemination (maybe?).

1 Like

Ok Ill set up a deck of slides

and we can put in the stuff we need there. Will try to get done by monday.

Great, thanks !

Just let me know when you are ready. :slight_smile:

Any news ?

Hi Nadia,

Any news concerning the platform presentation ?

I know you’ve been busy those days - if you need more time, just let me know :slight_smile:

yes busy.

sorry. Back at end of week.


@Alberto is this really necessary?

Not sure – but here’s an idea

The deliverable is the platform itself, not a report about the platform.

Here’s a suggestion: this very wiki could serve as the documentation to that deliverable. We clearly need it, so time spent on it is not wasted; and it tells users and the team how to navigate the OC community space. So maybe stick a Horizon 2020 logo into it; add a couple of screenshots (Nadia’s slides, I guess), and send the EC, I don’t know, a good-looking PDF file containing the link to the wiki?

@LuceChiodelliUB, does this work?

See things as a reviewer

Here is my view of things, and I am sure this is what Luce has in mind when asking any of us to provide reviewing material. @Alberto @Nadia @LuceChiodelliUB

The idea is to go as smoothly as possible with the reviewing process. The platform and its content – as suggested by Alberto – of course tells the story by itself, it’s all there ! And it is a living thing, you see the organism in full if you take time to look at it in action.

But, but, reviewers (and I ask you to believe me, I’ve played that role quite a few times). You have to put yourself in the skin of a reviewer when deciding what/how/why to deliver. Think of this person, reading about OpenCare a week before the review (sometimes more, but reading ahead of time doesn’t mean giving more time reviewing the project). Think of this person who wants to get information in a synthesized way, yet who wants to get a “feeling” about what’s going on.

So, my take is, it’s worth to put up a short, crisp, one or two pager that gives an overview of the deliverable. That tells this person where to go on the portal and what is to find there. You guys are professionnals at communicating ideas with so much enthusiasm. I am sure you all know what I am talking about.

I know time flies like an arrow. Reviewers don’t like to dig for information, they don’t like it when they need to summarize things themselves. Plus, when letting them do the work there is a risk that they don’t focus on the right thing – because yes, they come with their own set of glasses, with their domain of expertise that do not necessarily fit ours a 100% percent … and well, OpenCare is quite a unique “assemblage” of people, isn’t it?

We have that

You misunderstand me, Guy. I propose to point [reviewers, the Commission] not to the platform itself, but to this wiki. Which is a 1200 words document that describes the processes – exactly your two pager. But with one advantage: we need it anyway, so it is in our best interest to write it clearly. This gets us rid of the hollow feeling of writing a deliverable that no one cares about, just another box ticked, that I have sometimes felt when doing funded research.

Makes sense now?

Well then –

– we are on the same wavelength (sounds French, “sur la même longueur d’ondes”). I shouldn’t be surprised after all :slight_smile: A two-pager wiki works fine. @LuceChiodelliUB maybe can build a short printed (pdf) document describing the resources (what’s in there, and how/where to find them) to be uploaded through EMDesk.

Anyway the point I make remains relevant for all subsequent deliverables. Adopting a reviewer-compatible standpoint makes reviewing material more efficient.

1 Like

One important aspect

Guy, I agree with you, we have to put ourselves in the reviewers’ shoes when we have to submit information on the project to the Commission.

Alberto, if you wish to use the content of this wiki, this is fine with me, but my point is the following: this mini-presentation  is also a mean now to come clear to the Commission but also to the public about the scientific interest of putting up this platform.

When I mean public, I do think of the people already following the project, who may find the wiki just fine, but I also think that each partner could further use this documentation to bring people here together, using our own networks.


Ok, settled then:

  1. We improve the wiki.
  2. We point the Commission to the wiki
  3. We spread its content. We normally spread content in the form of links: in practice, it means that you share (by email, or Twitter, or whatever) a short message that says "We have made XYZ, it's really interesting. Check it out here: [link]." If the [link] points to our own online space, even better: people who are intrigued can very easily find out more, and even start participating.

@Noemi and @Nadia; agreed?

Questions on the wiki

I have done a first editing pass. I have some question.

The most important: we are now live, but our consent funnel is not ready. ScImpulse has designed it, but not yet deployed. Is this OK? @markomanka, what do you say as the person in charge of ethics?

General question: it seems the wiki is written with the OpenCare team in mind, but in the beginning it says

The purpose of this document is to help OpenCare project team and members joining […]

Less important: what do we mean by ENGAGEMENT TOOLS WE ARE USING - DASHBOARD? There is no dashboard other than this, but that has got nothing to do with social media, meetups etc. I propose to eliminate that.

@Noemi I think you are the author…

Engagement dashboard

Thanks for updating the wiki with more relevant info. The dashboard was meant to be a nice page/visualization with all the places people can engage with. At the moment this is probably all the community space - with its different pages. Scraping the formulation from the wiki then.

Ready to go?


As I see you keeping the wiki updated - just tell me when we are good to go with the delivery to the EC. Thanks ! :slight_smile:

This iteration done!

ping @LuceChiodelliUB as agreed yesterday… hope it helps. I checked the links again and it seems they’re all working, but won’t hurt to have another couple of clicks when submitting, just to be sure.

Great !

I’ll double-check and submit it :slight_smile:

Thanks again,