Our first meetup of our recently founded group
How is OPENMEDiAID different from other eHealth platforms?
There are many eHealth solutions out there. Some of them share goals and values or functionality with OPENMEDiAID, many other are biased by commercial interests. Yet, no project exists that is set up as an entirely crowd-sourced platform aiming to integrate all of the functionality that OPENMEDiAID plans to provide.
One of OPENMEDiAIDs core believes is that an open, collaborative and completely transparent process and community can create extraordinary results. We want everybody to be able to participate. We want to promote the spirit of an open and benevolent community of people that is motivated by the joy of sharing. OPENMEDiAID will either work because people see its value and support the project sufficiently with volunteer work and donations or fail otherwise. In a nutshell this means:
- completely free of charge: donation based memberships -> no hidden third party interests
- open participation: everybody is encouraged to contribute
- financially independent: unconditional money only (crowd-funding, donations)
- financially transparent: regular publication of all incoming and outgoing money
- open source code development
- democratic decision processes: issues will be discussed publicly and decided by transparent voting
Isn’t it dangerous if people diagnose and treat themselves?
OPENMEDiAID does not mean to encourage patients to replace consultation with their doctors with DIY diagnose and treatment. Actually, we are convinced that a healthy doctor-patient relationship is essential for good recovery. OPENMEDiAID rather wants to provide guidance by informing patients and doctors with case-specific medical data. It aims to offer unbiased information about diagnosis and treatments in order to improve the medical decision making process.
Secondly, it is not possible to prevent people from searching for information and independent decision making. In fact, it is already widely common practice that patients go online, read health magazines, blogs and user forums in order to find helpful information for their specific case. Unfortunately, most of the information is biased – with commercial interests, personal beliefs or entire ideologies. So why not make a tool that does not suffer from the deficits of such biased and unstructured sources of information and instead offers access to well organised, peer reviewed data with empirical relevance?
Why would people be willing to donate work and medical data?
People with ongoing health issues have very strong affection and motivation to participate and assist in the diagnostic process as well as treatment. They are important resources that are left mainly unused by the current system. Furthermore, due to the compassionate human nature, people with illnesses have a strong desire help others and create beneficial communities. There are already many on-/offline communities where users/patients share their individual stories and medical knowledge.
People with ongoing health issues will be much less worried about the security of their medical data if sharing their data anonymously could increase the likelihood of finding cure or proper treatment.
What about data privacy?
The quality of medical research, pathogenesis, etiology, diagnostic process, development of adequate treatment is highly dependent on the amount and quality of available medical data. Therefore, medical data should be treated as a common good, something everybody has interest in and can potentially benefit from. Currently, most medical data is treated as either private property of companies or research institutes or as sensible personal data that needs to be safe-guarded and not shared. Modern data mining techniques and technologies to store and manage extremely large sets of data are available but are not explored to their full potential because of very limited availability of useful data. Furthermore, doctors can not easily share patient data which greatly impedes knowledge transfer. Many opportunities to help individuals with their health issues are lost due to these structural deficits.
A fundamental requirement for OPENMEDiAID to work is that patients medical data is to a great extent accessible to the community. Instead of worrying about the risks of shared medical data we want to focus on its benefits to avoid the loss of opportunities resulting from restrictive data protection policies.
OPENMEDiAID has no other interest in the users medical data apart from using it for beneficial purposes of the community. We rely on the user’s trust in the organization which is why all processes are as transparent as possible.
Users have a pseudonym identity (an account that is not linked to their personal identity) and data is stored solely as part of that account, which means that ALL DATA ISSTORED ANONYMOUSLY. There is no reference to the user’s personal identity as this information is simply not of any value to the system.
Of course we still care about keeping the data in safe storage locations and will work hard to protect it from unauthorized access. If you are a hacker or security expert or simply worried about security issues, we encourage you to get involved.
Medical problems are hard. Isn’t this project to ambitious?
No doubt that inference of medical advice is a difficult problems involving large volumes of complex data that require smart models for their interpretation. This is why such a project can only be successful if many experts collaborate openly with a large community of volunteers – no barriers for participation.
Communities of collaborating people have created impressive results like running public electricity infrastructure, open source drug discovery, creating the world’s largest online encyclopedia, open source car development, open source software development (Linux, Android, Firefox, Libre Office, Hadoop).
All of those projects are solutions to complex problems. All of those projects have been done with volunteer work – in the spirit of sharing. We are building quantum computers and nano-bots. We manufacture electron microscopes and air planes. We manage infrastructure for mega-cities and create buildings of extraordinary height. This is mostly done for money and fame but it is done nonetheless. The question is whether we can get the necessary expertise and (wo)manpower for free – just because it is a great vision.
We think that building an open source medical decision support system is a perfect candidate for crowd sourcing because
- there is a large community of beneficiaries that consists of experts in all fields (everybody gets sick every now and then)
- the project seeding requires to feed much data into the system which can only be done with large groups of volunteers
- people need to trust the organization and platform
Furthermore, models and algorithms applicable to medical decision making – decision trees, bayesian networks, support vector machines etc. – have been studied extensively and are ready to be used in combination with cloud computing and other big data technologies.