Want to use data for good? Check it out our collaboration with the Nobism project, an initiative to fight the cluster headache disease!
Nobism is a patient driven app (available on Google Play and Apple Store) with the objective to collect data in order to help find solutions to a rare and understudied disease called Cluster Headache.
Through the application, and stored in Open Human, users have almost 400 different available buttons to share their Symptoms, Medicine, Therapies etc. Here is a sample of the raw data (reported by a unique patient):
The application was launched in July 2019, and currently has more than 100 users. Among those, 33 express their wish to receive monthly statistics with the results of their data. That’s where we come in.
Nobism is creating a new field of medical research. It is using macro study, thanks to the huge amount of data the patient-driven application can generate. Still today, most of the medical studies are studying one patient (micro). This is because of the difficulties to gather data, specifically for the medical field, being a sensitive topic. Nobism tries to fill this gap.
If the core of this project is to evaluate whether the medicine is working or not, we have first to motivate the patient to take the time to provide data through the application. Because of this, three paths are currently on its way.
1- Offering users insight about their data on a regular basis: It is currently sending monthly PDF to every user of the application who wish to receive it.
2- Pol, our Java mentor from Amsterdam, is in charge of making a new application more user friendly.
3- The Machine Learning field. We today have more than 20,000 rows of data, accumulated from one users data (one of them for about 8 years).
Nobism is attracting the interest of many professionals from hospitals to universities. Some communities of patients with other illnesses such as Lynne also expressed their will to implement this form of research. Finally, Nobism was introduced at the International Headache Society held in Dublin in September 2019. Hopefully this publicity combined with Ubiqum student’s efforts can show how Nobism successfully used data to revolutionise medicine.
If you are interested to join, coding in R, Python or Java Script, please contact Valerian (data mentor in Barcelona).