nobism is an initiative setup by Rogier Koning, A Dutch Cluster Headache Patient to support Patients, Patient-Leaders and Advocates to get active, collect data and work together to find solutions.
The only way to Change Healthcare is Patients with data working together finding solutions. As long patients are divided, others rule.
nobism will not do the work for you. We are here to support and give you the tools to do so. Patients need to take the initiative to setup Patient Driven Research Groups, invite and work together with other patients and do the 1 month cycles to build up their group knowledge and trends about best treatments.
nobism can support your group with a data scientist to analyse your group data. We can list you in the Smart Patient Diary and on the nobism website to make your project known to the world.
The use of nobism is for free. All data is only available in the user dairy. They can decide to share their data with a group or not. nobism doesn’t collect any data registered by the users.
Your individual search for solutions, will help finding one for us together
Founder of nobism. He started already in 2014 making the first sketches. In 2016 he got the opportunity to hire a programmer and develop the first small demo app. This app was called RegisterYourJourney. Bit by bit he added new options working close with the patients using it.
In June 2017 we’ve launched nobism. Nobis meaning “for us” while m stand for “medical”. He hoped to build a platform were we as patients can collect our knowledge and were we can validate the best treatments, leaving the bad ones behind.
Met Rogier on Twitter and later in real life. Presented the RegisterYourJourney app at a health conference in the Hague and got positive feedback. A belief in the project was validated and I have a keen interest to help people dealing with their diagnoses. Patient journeys are a bottom-up approach to the traditional top-down model of healing people and an interesting approach to reach out to all those patients dealing with their daily troubles. Exchanging these journeys could help people all around the world. I am an IT generalist experienced in old and new technologies from coding in Visual Basic to connecting with Blockchains and very proud to be involved with the nobism project.
Dr Juan Moíses de la Serna
Advisor Artificial Intelligence
When I first heard about this project, it seemed like a great innovation in the field of health research.
That patients collect their own health information based on their own interests, and that this helps other patients.
An interesting and innovative project that captivated me and that is why I wanted to contribute with my knowledge and experience as a data analyst specialized in Big Data in the field of health.
Gerard van Kaathoven
Advisor Business & Financial Planning
As an expert on Business and Financial planning, Gerard is involved with nobism to setup the businessplan and all related to it.
Advisor Digital Health
Alec is a trusted advisor in the field of digital health and delivers global insights and consulting to support key decision-making for business success.
Alec is a tireless promoter of the importance of patient-centricity, and an enthusiastic speaker on the topic.
He pioneered the early days of healthcare consumer panels and more recently, delivered stakeholder insights from pharmaceutical clinical studies.
He holds a bachelor’s degree in Sociology from Rowan University and has over 20 years experience in global market research and consulting.
Alec currently lives in the Philadelphia suburbs, and has lived and worked in Europe, Asia and the Western Pacific throughout his career.
Special Thanks to:
Arjen Went: One of my best friend that helped me by asking time over time “Why” when I was talking with him about the project
Pavia Anderson: Danish ClusterHeadache Patient, actively searching for Clusterheadache Solutions. Contributed the concept of the timeline in the app.
Dr. Juan Moises de la Serna: He added the idea to create relations between buttons. Also for having the trust that a patient Driven Project could change things in Healthcare, lets see if we can do it..