Wednesday, August 14, 2013

Questions and Answers: Part 1

One of the underlying assumptions about the crowd-sourced skin image database is that an open platform to gather information can produce as good, or better, results. The open-ness of the platform allows for non-professionals to contribute in a way that will add value.
Some details of the project have been described elsewhere in this blog. Below is an opportunity to discuss some specific questions about the project.

All of the questions and answers are directly related to the idea of a Crowd-sourced dermatology database. The project will be a web (and eventually mobile) based platform for individuals to upload images of a skin lesion or condition that has previously been evaluated and diagnosed by a medical professional. Requiring a diagnosis from a medical professional is for the purpose of facilitating greater accuracy. Doctors see millions of patients per year with skin related issues. Small percentages of those daily encounters are currently being captured in a database for future use. The intention is Not for self-diagnosis by patients, but rather to enable individuals to contribute to the scientific/biological body of knowledge. The images, freely given to the database, will be de-identified. The privacy of an individual’s health/skin related concern is as important as the collection of skin images for furtherance of medical science. The collection of images has value in the form of aggregated biological information. The database will be open-source. One way to view this project is thus: skin rashes/skin diseases are a manifestation of our common biological and genetic code. By aggregating submitted skin pictures from a global community into database, and then sharing that biologic information in an open source environment starts to create for medical science what computer science has done with open-sourcecomputer code.
Question & Answer

Who are your target users? 
This is a marketing question. This frames the issue in terms of narrowing to a unique user group. Narrowing to a specific a group thus makes the problem of spreading the word about the project easier. No specific category or group will intentionally be excluded from the project.
Millions of individuals in the US are seen yearly in medical facilities for a skin condition. There are more globally, although that data is harder to find. A percentage of these individuals who seek professional medical care for a dermatologic issue will be willing to contribute a picture (taken by themselves or others) of their skin for a project to contribute to the greater scientific/medical good. The greater good in this case is the aggregate of many people’s skin images. A target user has access to an internet connection (via mobile or desktop) and access to camera. Increasingly, that is through a smartphone camera with web access. The target user is more likely younger (15-35 demographic) given the facility and comfort with sharing information online. A user/contributor will likely have a strong interest in their personal health and an interest in contributing what they have learned about themselves to a larger project that has endurance beyond that moment in time. The individual action contributes a single potential to a greater good. A contribution is an individual action for others to use, however not in the exact same way as Wikipedia. A survey of Wikipedia users and contributors suggested that it was primarily young (26yr), single (~67%), males (86%) who had completed high or college (33% and 25% respectively) that contributed articles to the website.
 Individuals who have an interest in health research are also target users. Those who have desire to utilize an open database will also have incentive to promote image contributions to the site. Target users with a specific interest in the database include health educators (to use the site to show an array of images of a certain type) and learners (medical students, nurses).

Who are the people who will submit pictures?
Anyone willing to contribute a picture of an abnormal skin lesion with a diagnosis, which has the rights to do so, is welcome. The expectation is that the image has been seen by a medical professional such as a nurse practitioner or an emergency room physician and that diagnosis will be linked to the submitted image. Two broad categories of people are envisioned as image submitters: Non-professionals and medical professionals. A non-professional means a non-medical professional. A bank teller, a lawyer, a student are all examples. The non-professional is envisioned as submitting an image of themselves, their own individual skin. At the point of image submission it will be explicit in the fact that personal information will not be linked in order to protect the personal medical issues of those wishing to contribute. Image submissions from non-professionals other than the primary individual (such as a friend or relative) will be allowed, but made explicit the person whose skin is in the picture has given consent for that image to be shared in a de-identified manner.
Medical professionals may also contribute images. A health practitioner with the interest, time, and inclination, with the patients’ explicit consent, can submit images.

Why do they want to upload their picture?
At the initial stages, the immediate gratification for the contribution will be a thank you email (if an email address has been provided) and the knowledge and warmth that comes from contributing to the greater good. Why do people contribute to online forums for car maintenance, or pot-hole repair, or Wikipedia articles? There is a satisfaction that comes from contributing to something larger than yourself.
The psychology of this contribution model will use that as an underlying assumption: people are inherently good. People desire to be part of a project for a greater good. This is not to say that we act in altruistic and benevolent ways in all our every action. The main goal for initial iteration would be building up a database of images. People interested in contributing to that project will upload their picture. Even at a fraction of the potential user base, the will create a much larger open-source dermatology database than currently exits. That is because the number of images in any open-source dermatology database = 0.
There are several ideas that are being considered for user feedback that will help motivate and keep contributors engaged/active/and spreading the word.
Possible incentive structures for an image contribution:
  • Access to images with similar diagnosis – allowing a user to browse an online picture bank of images with similar diagnosis “oh that looks like what my skin looks like…”
  • Allowing users who submit images to track changes in lesions or moles over time. A picture taken year on year could provide side by side comparison for changes in size/shape/color. This would require the ability to match the image to the same individual, such as a user account. 
  • Allowing specialized dermatology interest groups with dispersed geography to share images, as the database will be openly available to them.
  • Suggestions are welcome.

Who is making the diagnosis?
This has been discussed several times, including in this post above.
A diagnosis will be made by a medical professional. The credibility of the medical professional is implicit in the fact of image submission. It will be articulated at the time of image submission, then implicitly assumed that user has entrusted their skin issue to someone with the ability to evaluate and manage skin conditions. It is not the aim of the project to verify medical licenses. In addition to submitting the image and the diagnosis, the user will be asked to provide several pieces of additional information. One piece of information will be the type of medical professional making the diagnosis. Professionals can include: Nurse Practitioner (NP), Doctor, Physician’s Assistant (PA), Dermatologist, Family Doctor, Emergency Room Physician.

Who are the people reviewing the pictures? 
At the outset, when image volumes are low, I will be reviewing the pictures. This will not be a diagnostic review. The initial image review will focus on visibility/clarity of the image. The image review will assess if it is a picture of skin, or is it not skin. It will look for any identifying features in the photo such as names or faces. Images that do not pass this bar will be sent back to the submitter and not included in the database. The number of images submitted will be counted in order to determine the percentage that are submitted but are not appropriate (such as a non-skin image). Once the image volume becomes great to be handled by a single individual others will be asked to assist and divide up the work. The bio and contact information of anyone with access to the data of images will be provided transparently on the site. In subsequent iterations it is one of the goals to have users contribute to the review process. It does not take a medical professional to look at a series of images and determine which a picture of skin and which is a picture of Mickey Mouse. Non-professionals can also review images and flag them for image clarity.

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