nobism is setup by Rogier Koning. It all started before even getting pain free of 8 years almost chronic cluster headache attacks.
8 Years of chronic attacks was a terrible time. A time with a lot of pain, confusion and many many treatments to try and obtain a pain free status. I’ve tried anything I could find to feel better, from regular treatments, to alternatives, therapies, vitamins and more. We all have this search for best treatments.
I finally found a solution that seemed to work for me personally and now I’m 95% pain free. But it took 8 years to get there.
nobism started with the idea that my personal journey and those of others, can help new patients to show the way. It could learn us what treatments are most effective to kill our Cluster Headache attacks.
When I started nobism, I had no idea where to go to, how to get it arranged or even what was needed to understand how effective our treatments are. I did know that our personal try and error with all kinds of different treatments and big data could help us.
I first thought that just having big data would get others active to help us solve these questions. So I started to get an app build as a diary for Cluster Headache patients. It was called registerYourJourney.
But later in the process I found out that having data is not enough. Without any infrastructure to be able to store the data, share them and analyze them, nothing can be done with big data.
I finally found a project called OpenHumans.org, a non-profit data storage platform where everybody can store and own their own data. They’ve supported nobism with a small grant to be able to connect the nobism app with the OpenHumans data storage.
OpenHumans is also a platform where you can create a project to request data for research. So at one side we can store our data and at the other side we can share it.
In my search for help with analyzing our data, I found the Ubiqum Code Academy located in Barcelona. They offered me help to try and setup a report with their students.
What we have now is a way to collect-, store-, share- and analyze data. As community we can try and answer our own questions, based on data only we can collect as individuals.
I do what I can to help our community forwards. I don’t know if it will work, but one can only find out by trying. What do we have to loose?
I hope to have
I know 100% sure that, although we have terrible attacks, we are still strong enough to change our own future.
Patient – Data Analytics & machine learning mentor – Spain
information coming soon
What to collect?
What we all did, is trying new treatments to get rid of our attacks. When you start a treatment, you do it because you have to many attacks. Or maby because you know attacks are comming. Once you start a treatment you want to have a result. You want to get less attacks or stop a cluster from starting.
Every member of the community starting a new treatment, could help give an answer to the question of how effective these treatments are. With every new treatment we try, we could improve the outcome.
Hopefully we can shorted our individual search and for those in the future, to find relief for our pain and suffering.
Docu: Cluster Headaches - Data to become pain free
A documentary with members from our Cluster Headache Community and some from the nobism project, about the value of patients collecting data and what it can do for a community