A lot of new exciting things are happening and for you to get a better understanding of who I am and what the nobism project is all about, I made aintroduction movie about myself and why I’ve setup the nobism project
I’ve presented nobism at the Cluster Awareness day in Brussels on invitation of the European Migraine and Headache Alliance. With this message I want to share my presentation with you so you get better insight in what we are starting up.
In the March 2019 edition of the magazine “Hoofdzaken” were 4 pages and the cover are dedicated to give insight to nobism as project and my motivations to set it up and what I hope we can achieve together.
Intro:according to Rogier Koning, doctors don’t use enough knowledge en experiences of patients about the effectiveness of treatments against Cluster headaches. Thats why he designed – Patient driven – An app to collect data. “We have to do our own research if we want to create a better future for ourselves.”
The article explains what is important to know to understand the effectiveness of our treatments. It shows insight in our timeline setup, the connection to OpenHumans to store data and Ubiqum willing to help us analyze our data.
I’m off today to go to Brussels and to attend the Cluster headache Awareness day 2019 in Brussels, organized bij the European Headache & Migraine Alliance
The Cluster Awareness day is Thursday 21th of March. The day before we will have a meeting in the European Parlaiment.
I’f I’m back I will try to give a resume about all that I’ve seen and heard.
My goal is to get our project known and show Europe we can do more than talk as patients and I hope to stimulate other European and National Headhache groups to join the initiative.
Collecting data is the way to find out what the effectiveness is of our treatments. This data can ONLY be collected by us as patients.
Only by all working together and by having our own data, we can create a change.
OpenHumans accepted my grant application to connect the application to their data storage platform. This way I hope to give every individual using the app the option to store and backup of the data. Its can also be used to share our data for research.
I’m personally very happy about this development and I see a lot of options that we gain by using the OpenHumans platform. We collect our own data about our attacks and treatments. But if you have an Fitbit smartwatch, you can also add the data to your profile and store it on OpenHumans.
Another nice option OpenHumans has is the connection with an app you can use to collect data about your location. The app is, like the nobism app, not connected to any server. Data you can store on OpenHumans.
What we as Cluster Headache patients can do with this is try to find out what influence the weather has on our attacks.
Data about attacks + Weather info of the location of attacks could give us insights about that.
OpenHumans has more options we can use to support our own research without for us the need to develop it on our own.
We’ve just update the nobism website with new content and layout to improve the information listed on the website. The website is now less about “patient doing research” and more about our own Cluster Headache research.
New is the information about OpenHumans, a non-profit data storage platform that give the option to Researchers to create projects and request you data for research. For our project it means we don’t have to develop our own data storage or sharing platform to be able to store and share data in a good way.
OpenHumans accepted my application for a grant to connect the app with their platform and this way I will have the funding to do so. I’m already talking to the developers to get the connection build. I hope to get an update for the app soon.
Also new is information about Ubiqum, a code academy located in Madrid, Barcelone, Amsterdam and Berlin. They always look for real-world data for their student to work with and they like the idea of being able to help patients with their knowledge.
They will setup a first project on OpenHumans in the near future to help us build our personal reports (that I’ve been making in the last half year) and to try and find trends in our data.
For the Advocates among us:
Because the data will be stored on OpenHumans and any researcher can create a project on it to request the data.
This means you can advocate Research and Specialists that Cluster Headache data is available for research.
For the Moderators Among us:
his project is not setup to get everybody in one Facebook group about Cluster Headache research. This is setup so all can stay were they are while working together.
So motivate your members to colect data, inform them about project that are listed or new projects that are starting. Inform them they can also advocate by showing their specialists what we are doing.
I’ve just finished the reports of January 2019. Its was a lot of work this month because a lot of possible changes are happening and a lot of work needed to be done.
I share my personal report so you see how I’m doing, how reports are (now) setup.
In total we’ve collected over 17.300 datapoints. 1.300 more than last month.
Every time a member of our group presses a button in the diary, a new datapoint is generated about the button that is pressed.
We are collecting data already from July 2018 and we have collected already over 16.000 data-points about our attacks or our treatments.
We are now finishing the reports of January 2019 to send them to all the members that actually shared the data.
If you want to join our project, please download the nobism app for Android or iPhone and join our Mailing list so we can keep you updated about sharing data and other developments
Happy to announce we have setup a new website to explain what nobism is all about and what we do as Cluster Headache group to improve our future.
Cluster headache is a devastating headache syndrome. Its listed as one of the most sincere pains a humans being can have and is often referred to as Suicide headaches.
The main objectives of nobism are to collect the data needed to start our own research. We use the fact we have data to advocate.
The website gives now some basic insight in what we do, how you can collect & share data, how we use it to create personal reports and advocating to create more research opportunities.
We will use this channel to keep you updated about the progress we are making.
Projects we are working on now:
- We are connecting the app to Open Humans to create a secure data backup and to give specialists the option to create projects and request our data.
- We are talking to umbiqum, a code academy located in Spain, Netherland and Germany. They are interested in supporting us to visualize our data and help us understand it.
- Currently talks are going to get specialists connected to Open Humans. Paolo Rossi of the EMHA is already in our group, but we are also talking to others.
- On a monthly base edit all received data and create personal reports with it. The personal report is a visualization of the data you collected. Goal is to give better insight on the frequence, duration and intensity of attacks.