The wonder of open notebook science: OpenCare community vs. OpenCare team

Quite a few curious people who participate in the OpenCare conversation about care end up engaging with the research team in a different conversation: the one about OpenCare as a research project. This is a lovely side effect of OpenCare’s radical transparency. We practice a sort of open notebook science. We don’t publish only results, but also questions, doubts, within-team disagreements, half-baked ideas. This is made more effective by a specificity of OpenCare: the community and the team are in separate “rooms” of the same online platform, People who hang around it can’t help noticing the stream of research project updates. Some of them engage.

This was expected. But I was not expecting the magnitude of the effect. 81 people have contributed at least one comment to the research team space. The team’s own numerosity fluctuates, but it’s about 20. The others are just people from the community who drop in to ask questions or make suggestions. And they outnumber us three to one.

In the network diagrams, nodes are color- and size coded by in-degree. You can think of in-degree as a measure of the interest that the person’s contribution elicits in the conversation. By this metric, it is clear that self-selected community members who just jump in are making a major contribution to the OpenCare research effort. The highest in-degree individuals who are not affiliated with any of the partners are @Federico_Monaco (ranks 7th by in-degree), @Rune (ranks 13th) and @Francesco_Maria_ZAVA (ranks 16th).

The conversation about OpenCare as a project (to the right of the picture) is of the same order of magnitude as that about open care as a potential pathway to societal well-being (to the left). It needs to be said, however, that the former has a lot of menial content: agreeing about a time and place to meet, requesting administrative information etc.

What are the consequences of all this activity? More diversity in research. More space for participation. With a bit of luck, more and higher quality scientific output. My favourite story is this: a community member, the already mentioned Federico Monaco, has proposed we do a paper together. He had found a call for papers in a journal he follows, and thought it a good fit. His proposal stirred the rest of the team into action. His thread received over 50 comments. A draft abstract was then uploaded onto a public wiki for community scrutiny and feedback.

Many people sent contributions large and small. The large ones (example: that of Ezio – here) did most of the heavy lifting. But the process had a role also for smaller ones. People like myself, who did not feel confident to step in as co-authors, were able to offer some small help without having to take responsbility for the whole thing. Federico led with a firm but light touch, asking everyone who volunteered any thought what role they wanted to play in the paper. For example, @Yannick – also not a member of the OpenCare team – was offered co-authorship (but declined). All of this happened out in the open. As you read the whole thread, you can see ideas form through the discussion of the co-authors. Collective intelligence about collective intelligence!

Interdisciplinarity happened quite naturally as a result of the open process. The final submission listed five authors: Federico himself (a medical anthropologist); @Ezio_Manzini (a designer for social innovation); @Noemi (a social scientist); @Amelia (an ethnographer); myself (a network scientist). How cool is that?

Another advantage of doing things this way is increased accountability to the people who take part in the main conversation, the one about care. Through the research team forum, they can ask question and make proposals. This should mitigate the perceived risk of researchers taking an exploitative attitude towards people’s contributions. The operative word here is “perceived”. We have the best intentions, but we recognize this is not enough. We are determined to demonstrate them to the community, and transparency goes a long way towards doing it.

I think that, together, we are making OpenCare… open. I had never had the luxury of running a research project with such transparency. I like it a lot, and hope to keep doing so in the future. What do others think?


I think it’s great

keep it up.  It should lead to more cross-pollinating.  Good model.

This makes me happy

Impressive to see it in numbers, visuals and anecdotes like that. This is only the tip of the iceberg, surely. I see some big potential in being able to look at the research process in this way.

In my experience with alternative research models, and especially when interacting with classically trained researchers, it does not occur to them that there are possible correlations between the research process and the value of the research outcomes. They are locked in how they have been doing things for years, naturally.

For example, citizen science as an approach is overwhelmingly commonly reduced to an alternative method for collecting data. A tool, not a different process. A way to collect data and involve people a little by doing so, rather than involving people in the whole process and having them collect data in addition to formulating questions, designing experiments etc. all along the way.

I was at a conference dedicated to the topic last week; a full programme, even quite diverse for most standards, and data collection and related issues were all anyone wanted to talk about. Insight does not progress if the wrong questions are being asked. It is detrimental if forms of participatory science are looked at only in this way. A perspective like the one you just posted could help to radically change that, to show that better questions should be asked.

The potential goes beyond that well into actual research. Coupled with the use of the Edgeryders platform, it’s valuable as digital infrastructure to manage a research project, a way of setting up a ‘meta’ research regarding the process, an analysis tool to see if there is actual merit to a participatory process, and a way for pouring everything into hard conclusions.

I think of Open Insulin right away @dfko . It would really drive a point home if we could validate the way you, and hopefully soon we, are doing the research.


That’s a really great point!

Whoa, @WinniePoncelet , I had not realized you were so frustrated with the way citizen science is done. I think @markomanka would agree with you here.

Your comment prompted me to expand on my anecdote of the mighty @Federico_Monaco driving this new paper presentation (in the 5th, 6th and 7th paragraphs of the post). Thank you so much, with your observation it might be even worth putting this thread in the coding queue – though this is something for @Amelia to decide.

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Meta meta

It just dawns on me as I read the example you are giving: as we prepare to write a paper on going from online interactions to collaboration of sorts with Federico, Ezio & co., we are in fact collaborating in the very process set out by opencare. So the very approach in writing the paper is a testimonial to its core argument. This is turning into very advanced research analysis :-)

Special thanks to community members like the ones Alberto mentions above and @WinniePoncelet for validating our findings, it means a lot. The rest is a function of reaching as many people with this case for open and participatory science in order to grow the outcome beyond the circles of believers.

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on becoming a native…

Dear all,

so in the end i became a case study :slight_smile:

Reflexivity and objectivity are very connected in ethnography.

It’s impressive to see and compare visually the two networks and your comments are so useful for the paper!

I’m trying to go deeper in how boundaries and tasks between the opencare network and the research are constructed and sometimes solved. By an ecosystemic and emergent approach all this gets high meaning.

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On co-authorship and “the crowd”

After reading @WinniePoncelet 's thoughts, @Amelia and I thought to make this post part of the ethnographic coding. The role of citizens in citizen science  is super-interesting, and it is part of a larger discussion on the role of communities in care, or any activity that involves “the crowd”. @markomanka wrote in the OpenCare proposal that “the crowd is often considered a rightless volunteer”. In science, citizens are only supposed to provide the data, but rarely process them or interpret them. In policy, they are supposed to be stakeholders and express desired and suggest ideas, but rarely to then execute them.

What does everybody think? If you are interested in the government side of things, I remind you we have a specific challenge:

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This is great! I’d love to delve deeper. I’ve got a good intuitive understanding of what you’re coding, but I’m not familiar with the practicalities and limitations. Thinking out loud here, I’m wondering if we can somehow run part of the Open Insulin research (or any lab research for that matter) on the platform and analyse that. What insight could it produce and how? Ping @trythis and @dfko .

In your case, you have a blanco somehow with the “team only” conversation. It allows for some crude conclusions. I wonder if you can refine the insight somehow. An other possibility: how would a blanco look if you ran this on a random research project? Run an algorithm on a classical lab diary and an open lab diary on a highly similar research topic, with types of contributors etc. taken into account? This and other options seem unpractical as the format of classical research is not very compatible. Does anyone have any ideas?

On the matter of “the crowd”: this is prevalent on so many levels. Going against this is at the core of why we do what we do in science communication and engagement. The narrative is always “the public” and “science” as seperate entities. This vocabulary already skews everything at the base. There’s always some form of elitism, paternalism, laziness in justifying research, general lack of insight in the role of science in society and so on. Even, and most harmfully, from those that work in the exact departments dedicated to “linking science and society”, often unintentionally.

How it could work

@WinniePoncelet | @dfko | @trythis this is a fantastic idea. We would be honoured if you made Edgeryders the home of your interaction. If you decide to go for this, here’s how it could work.

Technically, it’s pretty clear. You’d create your own project on Edgeryders. You have a forum and some other basic functionalities (tasks, documents, wikis). We would code your work using OpenEthnographer, and change the APIs so that your (coded) conversation is added to GraphRyder. This way, it becomes part of the OpenCare study. Insight produced would pertain to design/social science (what is collaboration for you, how it differs from collaboration in other OpenCare projects, how the group works as a group). They would not, I am afraid, pertain to biology!

Socially, it’s not clear at all what would happen. Maybe nothing. Maybe OpenInsulin Global – like OpenCare – will find itself with 80 people participating in your group. This could be another source of insight: gauging how interesting what you do is to others. For me the degree of active interest in OpenCare was a real surprise!

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That sounds great!

For what we are setting up in BE it sounds perfect as we start from a blank page. Seeing how @dfko and the Open Insulin group are already on a solid roll using their own platforms, it probably makes less sense to switch now. Same for the Sydney people I’d guess. It’s their call, but we can try it out first, learn and then spread it if it works.

As it stands I think we’ll be starting gradually in about two weeks. Looking forward to some surprises, biological and non-biological alike!

Deal done

Ok, it’s a deal. We’ll help you set up the digital space if you want (group creation, welcome message etc.)


Great! Next week we are meeting up with the team to plan the research/communications and all that. I propose from then on to start setting up the digital space, as the needs become clear.