Presenting nobism at world level

Very excited to announce I’m invited to present our community and project at WHAM, in Dublin hosted withing the bigger congress. I’m invited as Spanish Cluster headache Representative connected to AEMICE, Associación Española de Migrainia y Cefalea.

A lot of headache associations are invited here to discuss the future of headaches and present the projects we are all working on separately.

My presentation about “why we should motivate patients to keep a diary and collect data” will be supported by work we have done with nobism, OpenHumans and Ubiqum

Key point will be:

  • We all want the best for our patients we represent
  • Nobody really knows what best
  • We need big data
  • Patients are the only ones capable of collecting big data
  • plots and graphics to show what real time data can mean to our community, based on data collected with nobism, stored on Openhumans and analyzed by Ubiqum.

I will see if I get the option to record the presentation and add it to our YouTube channel for you to see.

Creating your PDF report

To create a report and send it back, we need to do a lot of work. More than I expected personally. Valérian has started this project as first student from Ubiqum and slowly we are getting others in that start to help us on different fields from writing code inPython and R, building the databases, machine learning and other things we need to be able to create our report.

Because we know transparancy is one of the most important aspects of succeeding as community, we are placing all our code online for all to see how its build.

I do understand this code is not yet readable for a lot of members of our group, because you need understanding of github, coding etc. But for those who do understand can start to take a look at how its build up.

A link to our github can be found here:

Help our Cluster headache community

If you have understanding of coding and are willing to help, please let us know. We are especially looking now for people who have a good experience in HTML and CSS to improve the output of the PDF report.

But if you have understanding of Python, R or other languages that can support the community, please let us know.

3 First Cluster headache reports for Advocating

July 2019 we have created the first Cluster headache report in corporation with OpenHumans as datastorage platform and Ubiqum Code Academy and their students, working on the data analysis.

The first student to work on our project is Valerian, a French student at Ubiqum Barcelone and CH patient himself.

We had to do a lot of preperation before we could start with the report. Valerian did an incredible Job in connecting to OpenHumans, getting the shared data, creating these reports in PDF and sending them back to the individuals that shared data for our community research on Cluster headaches.

Download the 3 first 3 reports shared back for Advocating. These reports can be used by Cluster headache Advocates to show what we do as Cluster headache research. As Patient you can use it to understand a bit more about cluster headaches and see how others are doing. If you get your own report, you can compare yourself.

How is the report Setup?

The report starts with a introduction page

Page 2/5 Timeline with attacks and 3 graphics extra about average Frequency, duration and intensity of attacks. We hope this page will give a good complete picture of your attacks.

Page 3/5 Plots about average durations, intensity and frequency of attacks. In the first column its only the data of last month and the second column has the data of all time

Page 4/5 timeline of Attacks combined with the taken treatments. With this page we hope to show you in an easy way when you used what treatment. We hope on individual level this will give you insight in the effectiveness of your treatments.

Page 5/5 Overview of collected data. This page plotted wrong, so we can forget about the information listed there. It does show what is possible.

For next month

Next month we hope to publish a new and better report. This one is a warming up, next one will get better.

the next reports will also have group analysis added to it. First simple like a count of items that we collected together.

My introduction

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

Dutch article about the nobism project

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.

Read the PDF (Dutch)

Cluster headache Awareness day Brussels

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.

Grant accepted by OpenHumans

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.

New website

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.

Reports January finished

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.

We hope we will soon have our connection to Open Humans and a project setup by Ubiqum so we can get more knowledge out of our data.

In total we’ve collected over 17.300 datapoints. 1.300 more than last month.