Approval for nobism (data source) project

Hi, I’m Rogier Koning and I’m asking for approval for my ADD data project called nobism. Nobism is a patient diary to collect real time data about symptoms and treatments. So basically any patient could use it to collect data.

This app is build so we as Clusterheadache patients can collect our own data for research.

By connecting to OpenHumans we as group create the option to backup our data and share it for research.

The nobism project is setup to do our own research. The app to ADD data is one side of the project. At the other side we advocate to get projects started to do our own research and get insight in our own data, disease development and treatment effectiveness.

Link to the project:
Link to nobism:

Funding note (COI statement) – this project has been awarded a mini-grant to support it (i.e. one of the project grants).

@nobismRogierKoning it’s great to see this! I’ve installed the updated app on my phone. :smiley:

But… I think I’m confused – how do I go about connecting to Open Humans and “joining” the project? I see that there are 58 members that have joined, so… it must be possible?

Actually… looking at them in the database, it seems that the Open Humans website has been spammed with many accounts named stuff like johnny70, johnny062…? :confused: That’s not great, these seem to be a bunch of spam accounts and should be removed.

Update: I deleted and reinstalled the app and joining works fine. :slight_smile:

:thinking: I wonder if I can use this for a self-experiment.

This seems good to me, I’m happy to mark it as :+1: for approval. It would be great to hear from others.

Johnny70, johnny062` etc are test accounts setup by programmers. We are in progress of deleting these.

I also think this is ready to go live. And thanks for cleaning up the test accounts @nobismRogierKoning!

Closing this as approved.

For the record: I checked in with folks yesterday in Slack chat, to invite any additional responses before closing this. Nobody weighed in here, but I did get two informal positive responses in Slack.

One response there noted that the title for this post was confusing, so I’ve updated it now (replacing “ADD data” with “data source”, as it’s not about ADD or ADHD :slight_smile: ).

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Opening this up again, actually – I realized we still have a question we need to resolve :grimacing: @gedankenstuecke

This is a new/evolving change in the site, but we’ve added the concept of “DataType” and try to have all data that is added marked according to one or more DataTypes.

That means we should figure out: What DataType(s) should apply to data from this app?

We can create a new DataType if needed. And the DataType (one or more) can be auto-applied to data. (This applies the same to all files, more specificity would using the API to specify DataType when uploading data.)

List of DataTypes:

any thoughts?

There is basically no datatype listed yet that would be usable. I would say Data from diaries.

But you could use Activity data. Its data about when we have attacks, but also measurements about heart rate or blood sugar levels. Its when we take a medicine or when we go to therapy.

@nobismRogierKoning Agreed. So, I’ve created a new DataType…

Self Logging Data: Recurring data actively recorded by an individual via a form or other tool.

It’s very broad but I think it captures what’s going on.

I think thats perfect, better than mine.

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Okay great – I’m going to use that, and close this again. Thanks!