I’m posting a review request for the nobism Ubiqum project which is applying for project approval on Open Humans.
This project is setup by me, as a Cluster headache patient to be able, to do our own research with fellow patients.
I’ve build a Diary-app that we will be using as group, to collect data about our symptoms and treatments. Our goal is to find out the effectiveness of our treatments. By knowing those, we hope to shorten our journey to a Cluster headache free future.
I’m now finishing testing of the app and the connection to OpenHumans, so we can store our data.
This Project is led by Ubiqum Data academy and they will support us in creating our own, personal report with analysis of our personal data and a report were we look at results of all data shared. This is were our own, patient driven research starts.
Although this project is setup for, and by Cluster headaches, its can be used by any patient group trying to setup their own research. The nobism app can be setup for any combination of symptoms, treatments or diagnoses.
Data generated by a user in the app, is ONLY stored on the device of the user, or, if the user creates an account and connects with OpenHumans
Quick links
Project link: https://www.openhumans.org/activity/nobism-ubiqum-cluster-headache-project/
Website: https://www.nobism.com & https://www.ubiqum.com
App Android*: https://play.google.com/store/apps/details?id=d67bbjep22.nobism.com
App iPhone*: https://itunes.apple.com/us/app/nobism/id1246109154
(*without OpenHumans connection)
Disclosing COI: The Nobism project has received some support from Open Humans Foundation via our project grants program. I don’t see that the project has done anything to add itself as a data source to Open Humans, which is my impression of what was intended with the project funding.
I think it’s OK to start using Open Humans for Ubiqum research, if it’s helpful, it seems the “data selfies” hack works well enough for now. (But I wouldn’t consider this as having met the funded project plan.)
@nobismRogierKoning the following mean this project can’t be approved as it is.
1. is this an academic research study with an ethics review board (IRB or equivalent)?
You have to pick one of the two options. (a) give proof of ethics board review (IRB approval letter or equivalent document) or (b) remove the “study” status from this project.
2. The terms/consent section needs to be much, much larger.
See screenshot:
^^^ I expect this section to comprehensively inform potential project members. Currently it still falls far too short. It should answer questions like:
- why might I want to join this project? what are its goals?
- who is running this project?
- what will I be asked to do for this project?
- what data will you have access to?
- what will you do with my data? who will you share it with?
These questions are also in the Project Review Guide. If you are running a study, this page would be your informed consent document. Otherwise, it should look similar – and you might think of it as “terms of use”. It can link to material elsewhere, but this page needs to do a good job at informing a potential project member without them needing to follow a link.
P.S. Everything I wrote here basically echoes issues in this other project review… Approval for Researchers mobility data analyzer
HI Madball,
I think you mix 2 projects. At one side I’m building to get the nobism-app connected to OpenHumans. This project received the grant and will be online soon. I have a seperated project setup as data input:
https://www.openhumans.org/activity/nobism/
At the other side we have this project to request data collected by the nobism app so we can create reports for everybody that is sharing and to use the data to setup our own research. So thats this project.
With this project we NOW reqquest data selfies to be able to start and share with only a few, to be able to setup a first report as example.
When the nobism app is ready we will change the data source and add the nobism project as data input. Data sefies will stay active because we have members that have data that is not stored in the app (because we had only export function, no import function)
I will try and add some information like you requested later today.
Update about the nobism project:
I’m currently testing the app with the OpenHumans connection included in the app itself. I’ve personally tested it and now we are making it ready to test with other users of the app. If that goes right, we will launch it life so it can be used by the other users.
And:
The project neither has ethics review nor review board. Ubiqum Code Academy is a non-medical institute to educate students in Big Data Analysis and Artificial intelligence.
As group of patients we need our own analysis, Ubiqum is willing to help us in these.
Is the project setup better like this:
The nobism & Ubiqum project is setup to create a visualization and analysis of the data we collect as Cluster headache patients using the nobism app connected to OpenHumans.
Goal: This project is setup to do our own research as patients with the data we can collect about our personal disease progression.
Data will be used to create a report. This report will exist out of 2 parts.
- a part with a personal visualization of the data shared by the user
- a part were we visualize trends and patterns based on all the data shared by the Cluster headache community.
Here we will try to answer the questions, we have as patients, about our attacks and the effectiveness of our treatments.
This is a “Live” project where we will try and add extra information to the report every month. By connecting and interacting with the Cluster headache community, we hope to get all the questions the students can use to work on the work on the report will be done by final students, finishing their education at the Ubiqum Code academy.
This project is 100% patient driven
Your input:
We expect users to collect data about their cluster headache attacks and treatments to be able to create a personal report. You could be contacted for questions.
Data you will share:
By joining this project, all data collected in the nobism-app and stored on OpenHumans, will be shared with Ubiqum Code Academy anonymously.
If you have older nobism-data stored in the Data selfie project, then this data will also be shared.
What will you get back:
regular reports based on your own data and that of all that shared.
Who will use the data:
Ubiqum Code academy and the student working on this project will have access to the data to work on the report. No data will be shared with any third parties.
Hey @nobismRogierKoning,
that reads much better to inform the users who are joining about what the goals are, what data is being shared and what they can expect to get in return. I think having this as the consent-text would be good.
Two more things that would be good to add:
- Could you add some links to Nobism & Ubiqum in the Consent text? Not every member might be familiar with those
- Could you give an idea what happens when a member leaves your Nobism/Ubiqum project. Will Ubiqum delete the data of former participants etc?
Thanks!
Is the project setup better like this:
The nobism & Ubiqum project is setup to create a visualization and analysis of the data we collect as Cluster headache patients using the nobism app connected to OpenHumans.
Goal: This project is setup to do our own research as patients with the data we can collect about our personal disease progression.
Data will be used to create a report. This report will exist out of 2 parts.
- a part with a personal visualization of the data shared by the user
- a part were we visualize trends and patterns based on all the data shared by the Cluster headache community.
Here we will try to answer the questions, we have as patients, about our attacks and the effectiveness of our treatments.
This is a “Live” project where we will try and add extra information to the report every month. By connecting and interacting with the Cluster headache community, we hope to get all the questions the students can use to work on the work on the report will be done by final students, finishing their education at the Ubiqum Code academy.
This project is 100% patient driven
Your input :
We expect users to collect data about their cluster headache attacks and treatments to be able to create a personal report. You could be contacted for questions.
Data you will share:
By joining this project, all data collected in the nobism-app and stored on OpenHumans, will be shared with Ubiqum Code Academy anonymously.
If you have older nobism-data stored in the Data selfie project, then this data will also be shared.
What will you get back:
regular reports based on your own data and that of all that shared. These will be stored back into your OpenHumans account
Who will use the data:
Ubiqum Code academy and the student working on this project will have access to the data to work on the report. No data will be shared with any third parties
If you want to stop sharing
If you end sharing with this project, no new data will be shared. Data already shared will stay available in the project
More information: https://nobism.com/ubiqum/
That looks good to me. What do you say @madprime?
@gedankenstuecke this would definitely be an improvement over the current text, and I agree that I think it could be “approved” with these updates.
But it seems that the project on the site hasn’t been updated with these planned changes? @nobismRogierKoning please let us know if you need help doing this?
I haven’t done so, because otherwise I would be adding small changes all the time for nothing. I will update the project today with this content
that makes sense. Could you update it to the current version so that we can approve if there’s no further feedback from the community? 
Thanks @nobismRogierKoning, the consent form for the project has been updated to include the information shared here
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@madprime Would you have time to check this status?
@nobismRogierKoning I went through it once again with @madprime and did make some minor changes.
I flipped the project from a study (which would need approval from an ethics board) to an activity, as previously discussed. And I also helped a bit with the formatting of the Markdown for the description & consent text (while keeping all of the content).
As there was no further feedback I’ve marked the project as approved and it’s now visible on the Open Humans website!
