Open Source Patient Network
Donation protected
Dear people,
my name is Benjamin and I want to gather a community to build a global, open source patient network that helps patients find and create the medical information and support they need.
The project is designed as a community platform - driven by patient's unique expertise of living a life with chronic medical condition(s).
OPENMEDiAID is going to be a professionally engineered, data-driven medical information platform – curated by a global community of patients and medical practitioners. An ecosystem of human intelligence and smart computer technology. Another home for citizen science in medicine - translated into many languages.
No financial interests from industries will be involved in the development of this project! This is why it depends on voluntary financial support.
Do you know somebody living with a chronic medical condition? Are you living with one yourself? Or do you simply agree that more openness and community can greatly improve the health care landscape. Then think about giving a donation to help this truly awesome idea get on its feet. If you want to make an offline donation via bank transfer, write to [email redacted] for more information.
======================
WHY DO THIS?
======================
Almost half of the adult population is affected by chronic diseases - trend's growing. Think about food allergies, hay fever, diabetes, rheumatism, morbus crohn, fybromyalgia, multiple sclerosis, AIDS, sleep disorders, depression.
The health care system is overwhelmed by this growing demand for medical support.
That's why patients need to be empowered to become a major resource in health management. Health care not only needs to be about patients as receivers of care but also about enabling patients to become providers of care.
But above all, the reason for me is that I am one of those patients....
=========
WHO AM I?
=========
I am a professional software engineer and open source enthusiast with more than 10 years of experience in software development.
I am also a professional rheumatist – diagnosed with Morbus Bechterew in 2012, working on individual treatment since with continuous success: I still boulder V5 +
Here are some of my experiences regarding medical support to handle my condition:
* I was not taken seriously by most of the doctors
* I was not given much of the most fundamental information regarding the correct use of medication (take Omeprazole if you have to use NSAR regularly), options for treatment of peripheral joint swellings (Retterspitz rocks!), rheuma friendly diet (manage your omega-6 fatty acids intake carefully).
* The most useful information actually resulted from my own research and from recommendations of other patients.
* Quality/Usability of public medical information is low. Paywalls protect higher quality medical information. Blogs, forums and health portals are often superficial, biased and rarely reference solid data.
As a software engineer I know this can be done much more efficiently and thoughtfully.
As a human being I chose to believe in the powers and intelligence of the crowd.
As a patient living with a chronic medical condition I want to share my medical data and expertise with others in order to give and receive help.
And I believe that many others feel the same...
=======================
WHAT HAS BEEN ACHIEVED
=======================
In June 2014 I began to write down the vision, idea and concepts of what is now OPENMEDiAID . I found myself a part-time job to sustain my living and spent a lot of time to research literature, try technology and develop more of the technical concepts and a high-level project plan.
I knew I would need an inspiring work place to connect with like-minded people. So I started going to public events related to open knowledge, collaborative economies, open source etc. This is how I found the Thinkfarm , an ecosocial co-working space, home of great projects, organizations and people. I applied for a desk and finally got lucky.
With all the progress made and growing interest from other people I took the next step: I quit my job to work full-time on OPENMEDiAID. Jenni Ottilie Keppler (the woman to the left on the cover picture), one of the Thinkfarm designers, created logos and infographics.
In the farm I met many other great people and soon there was a small group of supporters who also wanted to see this project happen. Together with them and some friends we founded the Open Medicine Initiative e.V. : A not-for-profit organization meant to carry the values of the project and provide an organizational framework.
We found a trust-worthy hosting provider – manitu – whose CEO was immediately willing to support the project. Some hours after talking to him on the phone we had our personal root server online. We setup the infrastructure we felt was necessary to coordinate a community of volunteers. We want to host all data and services in a trust-worthy place and NOT somewhere in the cloud.
Recently, the first health care professional joined our advisory board. We had learned some fundamentals of medical diagnostics and designed a first draft of a medical data model. Andreas worked on ideas about how machine learning could be used to for matching of medical profiles. We also had our first advisory board meetings to talk about adequate integration of psychogenic symptoms. All of that is work in progress, though.
Another fortunate development was the encounter with Richard , who will support the user-interface development of the initial prototype with the creation of his bachelor thesis.
So there is a vision, a set of first concepts, a motivated team, a not-for-profit organization with trust-worthy founders and the will to take the next steps:
* build a first prototype of a digital health record
* grow the team to include more knowledge and (wo)manpower
* engage with the community of empowered patients
* secure the next (crowd-)funding
=======================
WHAT I NEED TO CONTINUE
=======================
As the founder of this project, having worked without income for quite a qhile, the moment has come that I am running out of money. So I am asking the community to fund me a minimum salary, so I can continue my efforts in bringing this project into life.
The pledged 7500 Euros are what I would need to continue my work for another 5 month period. We will start building a first prototype, gather a team of developers and write up specifications for future development. If this campaign raises more money it will be used to pay other volunteers and speed up the process.
Raising more money will also give OPENMEDiAID a boost of trust which will be very helpful to convince public institutions of the seriousness of the project.
=====================
WHAT ELSE CAN YOU DO?
=====================
Apart from financial support, OPENMEDiAID can make use of all kind of contributions. Become a member of our movement! Join one of our discussion groups , write us about your skills and desire to help – there is work for you. If you are a patient be sure to join the group of empowered patients. To follow the projects progress join the group of OPENMEDiAID supporters.
And of course, like, share, follow and talk about the project idea.
I think it is really worth a shot . The time is ripe.
E-Health is growing everywhere! Let's make a large part of it open source and non-profit!
Thank you for hearing me!
============
INSPIRATIONS
============
Tal Golesworthy explains how he repaired his heart
E-Patient Dave
John Oliver caricatures the problems with pharma companies
======
Credits
======
- Campaign title picture by Andreas Andresen
- Open Medicine Initiative e.V. founding picture by Jenni Ottilie Keppler
- Infographic by Jenni Ottilie Keppler
my name is Benjamin and I want to gather a community to build a global, open source patient network that helps patients find and create the medical information and support they need.
The project is designed as a community platform - driven by patient's unique expertise of living a life with chronic medical condition(s).
OPENMEDiAID is going to be a professionally engineered, data-driven medical information platform – curated by a global community of patients and medical practitioners. An ecosystem of human intelligence and smart computer technology. Another home for citizen science in medicine - translated into many languages.
No financial interests from industries will be involved in the development of this project! This is why it depends on voluntary financial support.
Do you know somebody living with a chronic medical condition? Are you living with one yourself? Or do you simply agree that more openness and community can greatly improve the health care landscape. Then think about giving a donation to help this truly awesome idea get on its feet. If you want to make an offline donation via bank transfer, write to [email redacted] for more information.
======================
WHY DO THIS?
======================
Almost half of the adult population is affected by chronic diseases - trend's growing. Think about food allergies, hay fever, diabetes, rheumatism, morbus crohn, fybromyalgia, multiple sclerosis, AIDS, sleep disorders, depression.
The health care system is overwhelmed by this growing demand for medical support.
That's why patients need to be empowered to become a major resource in health management. Health care not only needs to be about patients as receivers of care but also about enabling patients to become providers of care.
But above all, the reason for me is that I am one of those patients....
=========
WHO AM I?
=========
I am a professional software engineer and open source enthusiast with more than 10 years of experience in software development.
I am also a professional rheumatist – diagnosed with Morbus Bechterew in 2012, working on individual treatment since with continuous success: I still boulder V5 +
Here are some of my experiences regarding medical support to handle my condition:
* I was not taken seriously by most of the doctors
* I was not given much of the most fundamental information regarding the correct use of medication (take Omeprazole if you have to use NSAR regularly), options for treatment of peripheral joint swellings (Retterspitz rocks!), rheuma friendly diet (manage your omega-6 fatty acids intake carefully).
* The most useful information actually resulted from my own research and from recommendations of other patients.
* Quality/Usability of public medical information is low. Paywalls protect higher quality medical information. Blogs, forums and health portals are often superficial, biased and rarely reference solid data.
As a software engineer I know this can be done much more efficiently and thoughtfully.
As a human being I chose to believe in the powers and intelligence of the crowd.
As a patient living with a chronic medical condition I want to share my medical data and expertise with others in order to give and receive help.
And I believe that many others feel the same...
=======================
WHAT HAS BEEN ACHIEVED
=======================
In June 2014 I began to write down the vision, idea and concepts of what is now OPENMEDiAID . I found myself a part-time job to sustain my living and spent a lot of time to research literature, try technology and develop more of the technical concepts and a high-level project plan.
I knew I would need an inspiring work place to connect with like-minded people. So I started going to public events related to open knowledge, collaborative economies, open source etc. This is how I found the Thinkfarm , an ecosocial co-working space, home of great projects, organizations and people. I applied for a desk and finally got lucky.
With all the progress made and growing interest from other people I took the next step: I quit my job to work full-time on OPENMEDiAID. Jenni Ottilie Keppler (the woman to the left on the cover picture), one of the Thinkfarm designers, created logos and infographics.
In the farm I met many other great people and soon there was a small group of supporters who also wanted to see this project happen. Together with them and some friends we founded the Open Medicine Initiative e.V. : A not-for-profit organization meant to carry the values of the project and provide an organizational framework.
We found a trust-worthy hosting provider – manitu – whose CEO was immediately willing to support the project. Some hours after talking to him on the phone we had our personal root server online. We setup the infrastructure we felt was necessary to coordinate a community of volunteers. We want to host all data and services in a trust-worthy place and NOT somewhere in the cloud.
Recently, the first health care professional joined our advisory board. We had learned some fundamentals of medical diagnostics and designed a first draft of a medical data model. Andreas worked on ideas about how machine learning could be used to for matching of medical profiles. We also had our first advisory board meetings to talk about adequate integration of psychogenic symptoms. All of that is work in progress, though.
Another fortunate development was the encounter with Richard , who will support the user-interface development of the initial prototype with the creation of his bachelor thesis.
So there is a vision, a set of first concepts, a motivated team, a not-for-profit organization with trust-worthy founders and the will to take the next steps:
* build a first prototype of a digital health record
* grow the team to include more knowledge and (wo)manpower
* engage with the community of empowered patients
* secure the next (crowd-)funding
=======================
WHAT I NEED TO CONTINUE
=======================
As the founder of this project, having worked without income for quite a qhile, the moment has come that I am running out of money. So I am asking the community to fund me a minimum salary, so I can continue my efforts in bringing this project into life.
The pledged 7500 Euros are what I would need to continue my work for another 5 month period. We will start building a first prototype, gather a team of developers and write up specifications for future development. If this campaign raises more money it will be used to pay other volunteers and speed up the process.
Raising more money will also give OPENMEDiAID a boost of trust which will be very helpful to convince public institutions of the seriousness of the project.
=====================
WHAT ELSE CAN YOU DO?
=====================
Apart from financial support, OPENMEDiAID can make use of all kind of contributions. Become a member of our movement! Join one of our discussion groups , write us about your skills and desire to help – there is work for you. If you are a patient be sure to join the group of empowered patients. To follow the projects progress join the group of OPENMEDiAID supporters.
And of course, like, share, follow and talk about the project idea.
I think it is really worth a shot . The time is ripe.
E-Health is growing everywhere! Let's make a large part of it open source and non-profit!
Thank you for hearing me!
============
INSPIRATIONS
============
Tal Golesworthy explains how he repaired his heart
E-Patient Dave
John Oliver caricatures the problems with pharma companies
======
Credits
======
- Campaign title picture by Andreas Andresen
- Open Medicine Initiative e.V. founding picture by Jenni Ottilie Keppler
- Infographic by Jenni Ottilie Keppler
Organizer
Benjamin Diedrichsen
Organizer
Berlin
