How will people find the site?
There are two different audiences for whom the site will hopefully be useful or interesting. One is a non-professional audience. This is the main group for whom the project is created. This group encompasses the broadest possible swath of the population. Initially the site will be promoted through word of mouth and personal social networks. At this point there is no budget for advertising. There will not be the ability to promote the site on search engines.
What is available at the beginning is a relatively small network. An initial marketing strategy will need to include free sources such as articles in local news/periodicals. Web based articles on relevant topics can be commented on and a link posted in the comments section. Connections with prominent individuals interested in the open-source arena and we can seek promotion of the project through their broader networks. As mentioned in the “who will use this” section – it will more likely be younger individuals, and venues such as Hacker News can be sought after to to promote the project to that demographic.
Who are the users of the image database?
Anyone. I have read many stories that describe products being used in completely different ways than the inventor originally imagined. I think the project, if viable, in and of itself demonstrates the promise of broader citizen participation in medical science. The original spark for the idea developed out of a conversation between a medical student and a computer scientist. That combination are potential users of the image database.
I can imagine a clinical physician or researcher in an academic medical center using the large data files for academic projects or research.
A database that can be displayed in an online webpage format – like the results of a Google image search – will have broad uses. I have watched as a competent doctor stepped out of the patient room and used a Google image search to compare what she saw to image search results during patient care - this database could provide, I believe, an equivalent result, without the extraneous results you get with that type of search. I have personally been a medical student looking at similar but smaller databases for examples of a rash while trying to learn - this could database could provide that with likely a larger volume of images. My hope is that be making the source code (the images) open, the project is not making a judgment on who can or cannot use the information or for what purpose. Rather, by providing aggregated information that is not currently available, it may create a category of users that I cannot yet imagine. My hope is to attract users that are currently beyond my imagination.
What kind of access do they need?
Full and open access. This is a project to aggregate and to curate. A librarian does not own the knowledge in a library, but rather acts as a facilitator to others get at the information. This project is intended to be used in a similar way, as a facilitator to get at a particular type of information. With regards to the distribution and format of the database, I view this as partially a budget question. Initially, I envision a database of images (such as .jpg files) with metadata attached (such as age, gender) to it that are stored on a secure server. During the initial phases, access to the database can be requested via an email, and will be shared in a zipped file. This can be emailed or shared via online file sharing mechanism to anyone who requests access. It would be one of the least expensive ways to begin development.
A subsequent project is the ability to deliver the collected images online, in a manner visually similar to the results of a Google image search. This would allow for browsing/searchable access without the need to know how to manipulate the contents of a large zipped file. This will ability is more costly from a web development perspective, and unlikely to be completed in the initial phases of the project.
Are there any partnerships that you make ahead of time or will they be organic from the site?
Partnerships will be multi-faceted. Some will be cultivated during the development, while it is hoped others will be created organically from the project itself. During the development phase partnerships from special groups may provide mutual benefit. Foundations that focus on a specific disease category such as psoriasis may find this project to add value to their members as a way to contribute to medical science. As such, they may seek to promote it among their membership. Additionally, non-medical groups such technologists passionate about open-source technology development may find the project interesting from their perspective and can promote the spread by word of mouth in order to participate in open-source health projects. Currently, there are few such projects.
How will user-submitted images/privacy be protected?
This is a critical question. In a previous post we discussed how people share photos online by the billions. I believe there is a large portion of society that is willing and desirous to spend a small amount of their time in order to contribute to a project that will have an aggregate good. At the same time, there is an imperative to protect personal/private information such as your personal health information.
Initial measures to protect privacy:
- Image suppliers will be encouraged not include pictures that contain the full of their face, tattoos or other easy to identify markings.
- During uploading there will not initially be a username or log in, so as not to link a user with an image.
- The user will have the right to their own information, meaning they can request to have it deleted from the database at any time.
- We will not store any personal identifying information (PII) with the uploaded image, or even request it for uploading. The exception will be an email address, which will not be mandatory. An email address can provide a way to communicate with users about the project. Additionally, an email address can allow the user to request an image be deleted at some later date.
- IP addresses will not be recorded at the time of image submission.
- No PII will be included in the distribution of the database.
-All privacy policies will be kept transparent, and will be reviewed periodically, by user request or suggestion, or if new information regarding privacy maintenance comes to light.
If anyone can download an image what protections, if any, are in place to protect the original submitters’ privacy?
The primary goal is to provide an open space where this information is available. By adhering to the privacy strategy mentioned in the question above it is creating a layer of protection for the original submitter. A submission will constitute an implicit and explicit agreement to participate in the project and its purpose. By not asking for a name, address, credit card, or phone number there will be data to track the image to a certain individual. In order to request for your personal picture to be removed at any time there are several strategies to do that. One is to provide an email or to provide a unique tracking number for the image so it can be requested to be removed at any time. The database will not include any of this linking information. This type of privacy of, of a skin photo, is currently maintained in these databases that are actively available. In summary, the primary means of ensuring user privacy is to collect/store minimal amounts of personal information with the submitted image.
How will this project be sustained?
At this point, there is no money generating from the project. At the initial phases it will be sustained with donations and grants and personal income.
There are several models of financial sustainability such as user fees, subscriptions, advertising, partnerships that find the project valuable to fund – however nothing specific has been decided at this point.
The Shuttleworth flash-grant is the reason the project will exist in the world beyond sketches on the back of a napkin.
Is there a commercial aspect to it?
There is no commercial aspect to the project currently. While their may exist commercial applications in the future – the idea was conceived envisioning the ethos of Wikipeda, Ubuntu, and Ushahidi. These are all projects that provide value to those use them. They create value but are not specifically designed for the purpose of revenue generation. There are commercial models that could be applied to this type of platform such as advertising physician/dermatology offices based on location. This type of model will not be pursued at the outset.
Are you actively seeking additional funding?
Not at the moment.
What are other potential funding sources?
More funding will not be pursued from outside sources until a proof of concept can be illustrated. A proof of concept means a working website, with ability to upload images to a database, and a database that includes pictures of skin with information attached.
We first have to prove there is something of value worth funding in the idea. Until that point the small grant and out-of-pocket finances will provide the financial input. In the future, I have considered seeking funding from one of the crowd-sourced funding platforms such as Kickstarter, Indiegogo, or foundations.
Are you supporting this out of pocket as a labor of love?
We have received one grant but this is also a labor of love.