Benjamin Diedrichsen edited this page Jun 9, 2015 · 40 revisions


openmediaid

…under the right circumstances, groups are remarkably intelligent, and are often smarter than the smartest people in them’… wisdom of crowds is derived not from averaging solutions, but from aggregating them.
- Surowiecki, J. (2004) The Wisdom of Crowds

Communities of patients

OPENMEDiAID is a non-profit, patient-centred and collaborative medicine platform built to help patients find and create medical information and community support.
Patient experience is as important as doctors expertise – therefore both patients and professionals will contribute to the medical knowledge in a peer reviewed community process.

…use data and technology

OPENMEDiAID is a data-driven social network for medicine. An ecosystem for a community to build tools for collection, visualization and statistical analysis of medical data. Matching algorithms help people to connect in support groups of similar patients in which each individual can benefit from the insights of other members.

…to build a digital commons for better medical decision making

OPENMEDiAID wants a collaborative and evidence-based approach to medical decision making: Structured data collection and knowledge transfer within a large community brings information transparency and empowers patients to take qualified medical decisions. A thoughtfully designed digital commons for medicine!

openmediaid

Patients manage and share their medical profiles on the platform (1). Supervised machines match patients based on their medical profiles (2) to create support groups (a), individual medical reports (b) and catalogues of statistics (c).


OPENMEDiAID will

You can be part of it!
Read about the project status and how to contribute.
Help us with our CROWDFUNDING

Missed opportunities in health care

The health care system’s general design relies on a small group of trained experts and profit-oriented economies to provide medical care to a continuously growing population. Unfortunately, the financial and human resources available to provide this care to the people are outgrown by their increasing needs.

Medical products and services are increasingly sophisticated but more and more expensive. Economic interests hinder the development of cheap medicine and favour non-transparent markets. The system is broken by design – it doesn’t scale with the growing needs of the population and it doesn’t deliver cost optimal solutions – for various reasons:

  • Conflict of interests:1 From a shareholders point of view it is more attractive to make a patient become a long-term consumer of medical services/products instead of a one-time customer. Read more…
  • Lack of information:2 Most of the existing medical knowledge bases are either biased and of low quality or commercial and protected by pay-walls. Too little effort is made to integrate the various sources of information. Read more….
  • Lack of trust: Medical information is subject to strict data privacy policies which are a consequence of the growing distrust towards industries and state institutions to use data for money making or surveillance instead of helping people to get better. Read more…
  • Lack of time: Many doctors lament that they do not have sufficient time to spend on a single patient. There is not enough discussion, explanation or cooperative decision making. Patients regularly don’t feel taken seriously. Read more….

The patient – a neglected resource
Probably the biggest deficit of health care systems is that they do not recognize patients as active agents and most vital ingredients in their health management. Patients consult doctors, undergo clinical examinations, try different treatments and research for medical information relevant to their conditions(s).

Many patients become skilled and knowledgeable about the every day dynamics of their condition and usually end up with an extensive record of medical data. This accumulated knowledge is an invaluable source of information for other people with similar health problems. It may save them time, money and suffering if appropriate diagnosis or treatment can be found more quickly.

After all, medicine is an empirical science and as such medical decisions should be based on knowledge and evidence generated from data.

If only all this knowledge and data were freely available…

Crowdsourcing an open data solution

…under the right circumstances, groups are remarkably intelligent, and are often smarter than the smartest people in them’… wisdom of crowds is derived not from averaging solutions, but from aggregating them.
- Surowiecki, J. (2004) The Wisdom of Crowds

The idea of OPENMEDiAID is to crowdsource the development, operation and evolution of a non-profit, Medical Decision Support System:

An open medicine platform built on models of expert medical knowledge, open medical data and machine learning. It will be transparent about its data and algorithms, empower patients to be active agents in medical decision making and knowledge building, save research time for both patients and doctors, be trustworthy with a non-profit community that has not conflict of interest.

Patients anonymously share their medical data and document their progress, personal insights and expertise on their condition.
Doctors share their medical expertise, peer-review data and supervise computer-aided knowledge discovery.
Together they create a software platform able to provide case-specific medical information and recommendations backed by data. They create a community collaborating to find the best solutions for their health problems.

Moreover, OPENMEDiAID is powered by people AND machines. Supervised learning algorithms work tirelessly to filter, classify and prepare information from the pool of medical profiles. Incoming medical data is continuously incorporated into the case-specific clusters and statistics on symptoms, diseases, treatments and clinical tests.
The algorithms will connect patients with similar profiles to form support groups wherein relevant discoveries of individual patients are automatically distributed to all their peers.

We believe in the following values as the foundation for OPENMEDiAID’s success.

Unlocked Gift economy
collaboration gift economy
Medical knowledge building and decision making require analysis and interpretation of complex data. We rely on lots of collaborating brains to build databases of medical knowledge and learning algorithms to make use of all documented patient experience. We want to build free, non-profit medical information services with a community of volunteers. We found the project on trust and a culture of sharing and caring instead of financial revenues, customer success and shareholder value.
Open Data OSS
open data open source
Medical knowledge is meant to help people, its access must therefore be unrestricted. Medical decisions need to be based on evidence generated from patient data. All involved data needs to be freely available for the sake of transparency and to make the best out of all opportunities. Open source code development allows anybody to contribute ideas and work. Code is designed, discussed, tested and revised by many people. Everybody can see what the code is doing, everybody can propose modifications.
Data cube Feedback loop
big-data and cloud technology continuous feedback
We want to combine powerful data processing technologies (NoSql databases, map reduce, machine learning) with cloud computing to create an open ecosystem for the evolution of medical data and algorithms. We embrace change and support incremental improvement of collected medical knowledge with an interactive system that learns from its community and incoming data.
Read more about…
How it works Recommender system eHealth Patient Participation

Project plan & status

The OPENMEDiAID project is a vision under active development but still in an early stage – all parts, including this concept, are work in progress (WIP).
Project planning and code development is done in public spaces so that everybody can see what is happening and get involved. There is a rough project plan consisting of three phases:

Bootstrapping Phase
Bootstrapping the project means to summon the basic infrastructure (team, community, IT and other resources) and to design a first product specification. We are founding the non-profit Open Medicine Initiative – the official legal entity to coordinate the project. We will grow our team and a community of supporters, build IT infrastructure, campaign for financial support (mainly via crowd-funding), dive into feature specification, design data models, algorithms and UI, seed data and build an initial prototype.

Platform Development Phase
As soon as we have crowd-funded sufficient financial support we can focus more resources on the implementation of algorithms and user interface, crowd-source data collection and integration of all parts into a usable online platform. We will work with short development cycles and continuous deployment of our current code base to regularly gather feedback from the community.

Public Beta Phase
Eventually, we will have a platform and backend of data and algorithms that is stable enough to be used and tested by a larger community of patients and doctors. The coordination schemes for this phase need to be designed with experiences gathered from the first two phases. There will be specific needs arising during the platform development that are currently unpredictable.

Contribute

I not only use all the brains that I have, but all that I can borrow.
- Woodrow Wilson

OPENMEDiAID is a crowd-sourced project – it is built with the support of a community of volunteers.

We need people willing to continuously support the project. Have a look at our open positions.

Note: We are planning to crowd-fund salaries for all major positions but until we are, all support is purely volunteer.


If you can not offer continuous support but still want to help out you can

You know a great site that offers medical information or services and would like to see some of its features in OPENMEDiAID? Submit a feature request here.

Contact

Currently, the project is based in Berlin – in an amazing, ecosocial co-working space called Thinkfarm. You can come for a visit almost any time.

If you want to get in touch write an email to hello (at) openmediaid (dot) org

You can also visit our Facebook page

License

An appropriate license has not yet been selected. It will most likely be a creative commons license that prohibits use in commercial ways but does not restrict use otherwise (CC-BY-SA).

Footnotes

1 Pharma industries, for example, have been publicly criticized for spending more money on marketing than on R&D

2 Pharmaceutical industry sponsorship and […]

Conclusion: Systematic bias favours products which are made by the company funding the research […].

3 The scandal of poor medical research

4 Reporting bias of medical research

5 Number needed to treat

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