Someone at Eli Lilly and Company was contacting Wikipedians about a partnership between Lilly and Wikipedia. Some people may not know that Wikipedia is a nonprofit project stewarded by the nonprofit Wikimedia Foundation, and that since its founding it has taken a strong stance against hosting external advertising and against entities with a conflict of interest publishing promotional content on Wikipedia. Because of this, there has not yet been a strong partnership between any commercial entity and Wikipedia. Their person, who was actually a researcher on a fellowship and not someone who was a lifetime Lilly person, got the odd and progressive idea to contact Wikipedians about publishing Lilly content. This person did his research and came to believe that now was not the time for a partnership. In short, the Wikipedia community would be afraid and act negatively no matter the nature of the partnership, and it would do good for neither community to have this kind of relationship at this time.
The researcher proposed an arbitrary project. There are hundreds of useful things Lilly or any pharma company could do that would fundamentally change the world, but his initial proposal was to use Wikimedia’s structure to document all regional variations in standards of care. This was something very close to my work at Consumer Reports and something aligned with several major grassroots activist movements, and even though I am ignorant of a lot of things and certainly do not know pharma industry, I was intrigued and a bit excited that a project like this could even be discussed. This project is cool, really cool, but it is just an arbitrary proposal for something that could be done with Wikimedia space that would greatly benefit the public and a company like Lilly. There is no way a grassroots effort like Wikipedia could coordinate a project like this, and it is unlikely that Lilly could do this without having some crowdsourced and community support, and even if Lilly did do something like this, it would lose a lot of value if there were not community stakeholders overseeing it.
For anyone who does not immediately understand the significance of documenting regional variations of standards of care, here is an explanation: The public has had long-standing assumptions that doctors know how to properly practice medicine. This has never been true. In recent decades, medicine has become more scientific and medical practice has become more based on evidence than on tradition, but even now, most medicine is traditional and not supported by science or evidence. Even what science does exist in medicine is being reformed radically right now. One major change is that since the advent of electronic publishing it has been possible to create systematic reviews, or literature reviews in which statisticians make compilations of all existing research on a given subject, turning many papers over years into single papers which are supposed to be the sum of all preceding evidence. It simply is not possible for medicine to be very scientific without systematic reviews, and the only technology which ever prevented their creation was simple math and publishing technology. Now suppose that a systematic review describes the best way to do something – that would be a scientific judgement, and hopefully that means the best choice. A systematic review is just research, and someone has to translate its results into a practice guideline. Typically this is done by a medical specialty society then adopted by a government department of health.
Another thing which only became apparent after Internet communication is just how different medicine is practiced regardless of the development of best practices. Two doctors may see the same patient and recommend different therapies in the same situation; that kind of variation people knew well, and it has always been suboptimal. Something more provocative than that though is that all the doctors in a region tend to have certain practices which are similar to each other but different from doctors in other regions. In this case, one group of doctors is likely doing something better than the other set, because science only recommends one best way. Sometimes still – the doctors in a region will publish “best practice guidelines”, and in one country these guidelines may vary greatly from what other countries recommend. This researcher from Lilly had guidelines for treating hypertension in Scotland. Hypertension is a common disease and Scotland is a small country, yet Scotland and most other countries for every disease have their own guidelines for how to treat a given medical condition. This should not be. There should be one way which is recommended with science, and then if anyone wants to do anything different, then they should do the different thing with the understanding that they are acting contrary to evidence.
I would like to add that I am not advocating that medicine be reduced to a flowchart or decision making process. Doctors are best because of their intuition, and even a bad doctor who has gone through medical training will have instincts he or she cannot explain or consciously know and still do much better at recommending medical care than any codified process. The idea behind tracking regional variations is not to force doctors to do things in a certain way, but rather to act as the ultimate reference guide for when doctors want to know the sum recommendation of all scientific data collection and how that should translate into a treatment practice.
Okay – so suppose that all these variations were documented. How would that look on Wikipedia? Right now, for example, there is a Wikipedia article on hypertension. This Lilly guy was proposing to make an article called “Hypertension in Scotland”, and in this article, there would be what was of most interest to him – a description of the needlessly unique indications for treating hypertension in Scotland, plus some information related to the subject which were not necessarily his interest, but which completed the article. This information would include summaries of Scottish hypertension epidemiology by year, probably linked somehow maybe through Wikidata to data sets. If someone were interested in a disease in a place, then they could learn how that disease is treated there, how common it is, and instantly be able to compare the incidence and culture of a disease in one place to the norm internationally or to any other place. It seems profoundly powerful to me and even more interesting because I expect that laymen could and would read some of this kind of information if it were available.
Layman certainly could not read all of it, because this would have to be partially machine generated. Wikipedia currently has one article on hypertension, and if there were a supplementary epidemiology article for each of 200 countries, then the number of Wikipedia disease articles would expand 200 fold. The community now can barely maintain what articles exist. I really feel that it is necessary to share this information if the costs are low as they seem to be, and if this would influence medical practice in a wholly positive and significant way, as I expect it would.
Now is not the time for this, unfortunately. I expect this will be done in the future after Wikidata is better established and there is better social infrastructure in place to allow partnerships with mega entities (Lilly had USD 23 billion in revenue in 2011) while keeping the community in control of the publication.