Wiki Project Med/Advocacy

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Wiki MED advocates for free access to educational health media. When a political action may serve to increase access to health information through the Internet and especially through Wikimedia projects, this organization may endorse those actions in any country. More commonly, this organization publishes talking points and arguments that other organizations may use in their own activist efforts when they discuss policy with their lawmakers.

This organization collects and re-distributes information about government barriers to free access to health information with the intent of fostering conversation about making that information free.

An example of the sort of problem to be addressed is any government's publication of educational materials which all parties want to be distributed freely and as broadly as possible, but which for various reasons - mostly traditional precedent - have copyright restriction upon them which prohibit their distribution. This sort of prohibition is actually common in many places, and a major barrier preventing change is only the fact that conversations about this problem do not happen often enough.

Wikimedia Zero[edit]

Main article: mw:Wikipedia Zero

Wikipedia Zero is an initiative of the Wikimedia Foundation to increase access to Wikipedia projects by partnering with local governments and local phone service providers to allow free unlimited access to Wikipedia through mobile phones.

Wikimedia Medicine asserts that all people everywhere in the world have a right to access information which will help them make decisions about their own health, and since increased access to Wikipedia is often the best chance people have to getting access to information they need, Wikimedia Medicine endorses community petitions to governments to allow the Wikipedia Zero initiative to activate in requesting jurisdictions.

WHO and ICD-11[edit]

The World Health Organization is seeking comments on the upcoming eleventh revision International Classification of Diseases, better known as ICD-11. The current version of this classification system cannot be used on Wikimedia projects because it is under a restrictive copyright. If subsequent versions of this classification system were licensed under a Wikimedia-compatible license then Wikipedia articles could be cross-referenced to information databases and also this classification system could be applied to the categorization system in Wikipedia. Wikimedia Medicine advocates for the WHO to license this international classification system under a Wikimedia-compatible license.

Publication of medical research[edit]

Wikimedia Medicine advocates for governments to give taxpayers access to taxpayer-funded medical research by requiring that institutions receiving taxpayer money to conduct health research publish their work under a free license.

Statements on fairness of using health media[edit]

Suppose that in the course of health care delivery, the health care provider orders the creation of some media content based on a patient. This could mean the production of an x-ray image or a video of a sonogram. Wikimedia Medicine issues statements on the fairness of re-use of this media content outside of diagnostic procedures and in the context of educational media as an upload to Wikimedia Commons.

Some factors which are to be considered in determining suitability of media for sharing are the following:

  1. Local law where the media was created
  2. Determination of media creator - is it the patient who consented to the procedure, the doctor who prescribed the procedure, the radiologist who oversees the imaging lab, the technician who operates the camera, the hospital which houses the entire operation and which traditionally has been the holder of the physical media, or the government which funds the public hospital which hired the staff who collected the images?
  3. Respect for the privacy of the subject of the media - media should not identify the person featured in the media in accordance with traditions about protected health information

Ideally when rights-holders agree to share the media, the sharing of the media should be permissible by local law. Wikimedia Medicine advocates for legal allowance to share media when all rights-holders want to share the media.

Example

Imagine that there is a repository of x-rays which was produced by x-ray technicians and held by a hospital. These x-rays were taken in the course of providing medical care. Consensus by experts who give a written statement is that the x-rays are "de-identified"; these images could not reasonably be used to identify the people whom the x-rays portray. Some Wikipedians assert that some of the x-rays could be used to educate the public on certain health conditions. The doctors, x-ray technicians, patient rights groups, and hospital all agree that it would be good to share the x-rays, but there is little precedent and no particular law which gives a specific statement on sharing medical diagnostic images in this country. Because of lack of precedent, no one in particular wants to say that they have a right to share the images, and therefore no one shares the images.

In some circumstances, in response to a proposal to share such media, Wikimedia Medicine would write and publish an opinion that the risk of harm to anyone should be predicted as negligible and the benefits to the world would be significant if choice images were shared on Wikimedia projects as educational content. After getting responses to such an opinion, Wikimedia Medicine may send the opinion to lawmakers as an example of how free access to media is desired in some cases and right to support with law.

Wikipedia as a educational tool[edit]

Some organizations, including taxpayer-funded government organizations, question the legitimacy of Wikipedia and related project as tools to educate the public on health-related issues. Wikimedia Medicine advocates for the acceptance of Wikipedia projects as teaching tools in health education campaigns. Wikimedia Medicine may respond to organizational requests about the implications of using Wikipedia as part of public educational campaigns on health issues, and may support such organizations in their requests for government approval to use their resources to develop Wikipedia content.

Organizations may wish to develop Wikimedia health content because in many regions the articles on Wikipedia are the most requested source of health information and what the taxpayers and citizens are already using to get health information on the Internet.

Consent review[edit]

In some cases a health care provider may take a photograph or other media of a particular patient to create a learning tool for discussing a medical condition with visible symptoms. Wiki Med may provide, collects and shares guidelines for health professionals who have media to share, such as photos or x-rays. It is the expectation that uploaders will follow the guidance of their licensing body. Wiki Med promotes patient rights and safety in media sharing.

Promoting open licensing[edit]

This organization advocates for open licensing of educational health material. When a political action may serve to increase access to health information through the Internet and especially through Wikimedia projects, this organization may endorse those actions in any country. More commonly, this organization publishes talking points and arguments that other organizations may use in their own activist efforts when they discuss policy with their lawmakers.

We are working to try to convince the World Health Organization to adopt a creative commons license that is compatible with Wikipedia.

Research relations[edit]

The organization will be a point of contact for researchers who want to study the health information on Wikipedia. Many organizations need advice on how they can run surveys on the extent to which the public uses health content on Wikipedia. This organization will work with the existing Research Committee to assist researchers in getting the data and community support they need to be able to manage their own Wikipedia research at their own institution.

Any organization which serves people who get information from the Internet has a stake in the quality of information on Wikipedia and related Wikimedia projects. For many demographics and for many topics, Wikipedia is the most consulted source of health information.

Health organizations who want to participate in Wikipedia projects to do health education outreach need the following:

  1. Presentations on Wikipedia and statistics of how people use Wikipedia
  2. Training materials to introduce them to aspects of Wikipedia that are of most relevance to them as new contributors. In many cases, health professionals' time is scarce and they appreciate first receiving key information on how they can contribute within their field
  3. A maintained and curated collection of scholarly literature describing the nature, scope, and quality of Wikipedia health content
  4. A point of contact for requesting conversations from members of the health community in Wikipedia on how their organization can connect with the Wikipedia community and learn to contribute content
  5. A community networking space
  6. A historical repository for collecting case studies about community experiences in developing health content on Wikipedia

Since there is also precedent in the medical community of supervising human subject research, this organization will also participate in existing community programs for reviewing human subject research on Wikipedia. For example, if a researcher who is not a Wikipedian seeks to recruit Wikipedians for long interviews, this organization will be mindful of and participate in discussions about minimizing harm to and promoting benefit to Wikipedians who participate in such research and the Wikipedia community in general.