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nobism: community research

by Rogier Koning

The project aims to setup a platform where patient communities can use their own data together to try and find out how effective the treatments are they actually use (both regular as alternatives)
bocairent, Spain Neurology 2021 Vision AI in Medicine 2021 Vision challenge

All Team Company Patients Physicians Hospital Partners Mission Innovation Details Supporters Comments Updates

About our project

The problem we solve: We have as patients many treatments we can get prescribed and every specialist starts prescribing different ones. Why is that? Why does one patient starts with treatment A and the Other with F? Specialists have no real insight in the effectiveness of the treatments they can prescibe and as community we can help show what treatments are most effective.

About our solution: As patients we try many treatments. If it works (pain goes down) we continue. If it doesn't work (pain stays the same or goes up) we search for a new one. By collecting data and analyzing it as community, we can shine light on how effective treatments are and show new patients and specialists how to become pain free sooner

Progress to date:

We've managed to get the whole project setup from the app to collect data, the platform to store it and a team that worked on it to give us feedback and insight on the data. We managed to collect over 27.000 datapoints with over 50 members from our community.

COVID19 paused our project now because we lost our data analysis. The team doing this went out of bisiness due to COVID.

We are currently working with a team of 10 volunteers from Ordina.be to recreate the data analysis and improve the app both in design as in technique.

About Our Team

Creator: Rogier Koning

Location: Tierra del Fuego

Bio: The nobism project is setup by Rogier Koning in 2015. As patient Rogier felt not enough was done for their community in reference to research done around the world. The project started with a simple app to collect headache attacks and grew with the help of many volunteers to a setup where communities can do their own research to find out what the best treatments are, looking at all that is available. Currently we are working with a team of 10 volunteers to redesign and setup the nobism project.

Title: Owner

About Our Company

nobism

Location: Carrer de la via s/n Camping - Villa Carmen
bocairent, V 46880
ES

Founded: 2015

Website: https://nobism.com

Twitter: @nobismhealth

Facebook: https://www.facebook.com/groups/471529509915015/

Product Stage: Prototype/MVP

Employees: 1-2

How We Help Patients

Having insight in the effectiveness of the treatments we actually do, will shorten the journey of other patients to become pain free and improve their future

How We Help Physicians

The physicians that are know with the nobism project, all stated how difficult it is to get access to patients and communities for their research. Once they get acess to enough patients, it still takes a lot of time to collect the data they need, making it very expensive when a project involves collecting data for longer time. Drop-out is high in research due to various reasons. Many Physicians have no access to tools to collect or analyse data. nobism can give direct acess to patients and groups that are actively involved in collecting data. This will lower the funds needed to get patients involved and it can lower the dropout, because these members are used to it before they start. Big data pools will be available, once a project starts, that can be used to generate a detailed baseline of every member involved. The app to collect data is setup as framework and can be changed to the need of the Physicians, so they get what they need to do their work. Python, R or other languages can be used to get insights out of the data.

How We Help Hospitals

There is no data showing any party involved how to treat a patint with the treatments that are available. It comes to the individual specialist or team to make a disicion on that based on their experience and data available from single treatment research. Being able to treat patients with the most effective treatments, based on real world data, will lower the costs involved treating a patient.

How We Help Partners

better insight in what is important for patients and their communities Direct access to groups that are difficult to reach Less dropout in research because members showed they are active in collecting data and supporting projects

Innovation Details

Intellectual Property Summary

Everything developed in the nobism project can be used by any other party interested in creating community research for patient groups. Contact me for more information

Clinical Information

not yet. Do have many specialists known with the project, that agree the collecting and use of real time data can be an incredible asset to improve healthcare. Because of that I've been invited to speak at various places already like the St George University, the World Headache congress, the European Migraine and headache alliance, European Parlement and others

Regulatory Status

There is no financial ties to this project. All is done by volunteers without any financial interests. This project is 100% patient driven

How we will use the funds raised

Work is done now to get a new app and data analysis platform active. This is done by a team of volunteers from Ordina. They are also willing to work on a phase 2 to improve what is done but they ask for a funding so thier work will be not be lost if a first problem occurs. the bar is set to raise 50.000 to guarantee this project can go on for at least 2 years for the folowing fields:

  • Improve the application used to collect data
  • Improve the community-feeling in the app by connecting it to existing facebook communities
  • Improve the data output for better insight

Thank You

This is a 100% patient driven project in a field where not many see any future. Community research is seen as something that will not give return on investment.

There is no platform in the world where patients can go and where they can actively get involved in research. The one that manages to setup a platformfor communities, will gain the trust of the patient with access to their questions, data and insights.

Our setup is made for Cluster headaches but can be easily used for Migraines, rare diseases or any diagnose where collecting data could give insight. 
 

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