Friday, May 31, 2013

Forward Movement

I recently received an email, the contents of which are shared below:


You have been nominated by Andrew Rens to receive a Shuttleworth Foundation Flash Grant to work on your CrowdSourced Dermatologic Picture Database. We have a funding model that rewards brilliance and new ideas by awarding full-time Fellowships. However, bubbling around
the periphery of our model it has become clear that there are voices that are not heard, ideas not seen and Fellows that are not ready to be Fellows - just yet... This is where you and the new Shuttleworth Flash Grant come in.

We tasked our Fellows to seek out and nominate an impressive change agent, who may not be able to concentrate on their brilliant idea yet. This grant is for the sum of $5,000 and will be awarded to you personally to bring that idea forward. The only string attached is that we ask you to live openly, tell us and the world what you have done with the money.


I am very thankful for the opportunity. This pilot financing will be used for website development and beta-launch. The bottleneck up to this point has been mobile and web development. The goal is to use as many open-source platforms as possible in order to limit cost and because the project speaks to open-source values.

Concept for Open Source Dermatology Database
The pilot grant will be used for the development of a platform (website-mobile if finances allow). The platform will be used to facilitate the proof of the following idea: An global online community of non-professionals can effectively create a database of dermatology skin pictures of sufficient accuracy and volume such that it will produce a database that is more valuable compared to current proprietary databases. One unique value of this project is that the product – the database with tagged skin images will be made available under a creative commons data license to all. The data represents a collection of global biological information. The project is trying to use the website as a platform for sharing this knowledge in the form of skin pictures.

This has never been tried before, in quite this way. enables the sharing of patient contributed information, the angle is more from a patient support group perspective. Another uniqueness for this project is the idea of the medical community inviting wisdom and participation from patients. The openness and invitation to contribute is a different posture compared to the current status of medical knowledge creation. Medical research is currently conducted in such a way that information about how you reacted to a medication is recorded from you as a one in a large study. The information is stored in a data-set and is the property of the university medical center or pharmaceutical company conducting the research. The research subjects rarely have complete/open/free access that they were a part of creating. The current posture infuses the culture surrounding personal medical records in the United States. In many instances, there is formality and red tape to cut through in order to obtain your personal health information - in an age where access to information is becoming more ubiquitous. 

This concept brings up large questions. At this point, these are open questions for the which the implementation of the project will seek to address. That is a part of the joy of the project for me. From the viewpoint of the physician, one question is how accurate do you need the diagnosis on the submitted picture. We know that not every visit with a doctor generates the correct answer with regards to a skin rash. There are not the resources to follow up and send  a dermatologist and examine and biopsy every piece of skin from a submitted image. The first layer is to ask the user to submit an image of a skin lesion or rash only after it has been evaluated by a medical professional.

Several other open questions:
How do you ensure unhelpful image submissions are limited (ie. non skin)?
What is the photographic/pixel quality needed in order for the image to be seen clearly/re-usable and ultimately useful?
What data needs to be submitted along with the image? To much information and you lose participants, too few pieces of info (age, diagnosis) and you limit the power of the database.
How do you guard against fraud such as fake/false submissions?
Should you be required to submit an image in order to use the database?

At this point I am seeking to engage with web developers and move the idea forward.

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