Monday, January 18, 2021

What If Healthcare Was Like Wikipedia?

Last week I wrote about, well, how awful social media has become, so this week it’s nice to write about pretty much the opposite: Wikipedia turned twenty last Friday (January 15). 


In person years that’s not even old enough to buy alcohol, but in Internet years that makes it one of the grand old masters, like Google or Amazon.  Wikipedia is one of the most visited Internet destinations, with its 55+ million articles, in 300+ languages, getting some 10b+ views per month. 

It is something that, by all rights, shouldn’t exist, much less be successful.  A non-profit, volunteer written/edited, online encyclopedia?  An online resource widely trusted for its objective, generally accurate articles in a world of fake news?  As the joke goes, it’s good that it works in practice because it does not work in theory.

That’s sort of the opposite of our healthcare system: it’s good that it works in theory, because it sure doesn’t work in practice.

Wikipedia works due to its army of editors (“Wikipedians”); some 127,000 have edited the English edition alone within the past 30 days.  They work in virtual real time; when someone wins an Oscar the update happens almost immediately.  When the U.S. Capitol was stormed two weeks ago, Wikipedia had a page up before the protesters were gone. 

Katherine Maher, CEO of the Wikipedia Foundation, told The Washington Post:

It is remarkable that it exists when you think about the history of knowledge in the world and who has access to it and the very idea that people can participate in it. It is a somewhat radical act to be able to write your own history, and in many places in the world this is not a thing people take for granted.

In an Economist article, she attributed Wikipedia’s success to Cunningham’s Law, which holds that “the best way to get the right answer to a question on the internet...is to post the wrong answer.”  It works for Wikipedia, she says, because: “People love to be right, to demonstrate their competence.”

Academics and some professionals may scoff at its entries, since Wikipedia’s editors come from a variety of backgrounds, but multiple studies have validated that the accuracy of its articles is high, even in specialized areas like science or medicine.   Indeed, Wikipedia is believed to be the most used source of information on health – among not just patients but also physicians and other healthcare professionals.   

Wikipedia acknowledges that it still has diversity issues – the vast majority of its editors are white, English-speaking men – and that false entries can slip through, either unintentionally or maliciously.  But it certainly is no worse than other Internet giants on the diversity of its workforce and much better than them on eliminating incorrect information.  If it’s a choice of believing what you see on Wikipedia or on Facebook, it’s no contest. 

Like many sites established in the desktop era, it has struggled with the shift to mobile.  Ms. Maher told One Zero: “We missed the boat a little bit on mobile but we now have a fully integrated full-service mobile editing feature. Mobile is now the primary way in which people access Wikipedia.

Wikipedia also struggles to make inroads in India and Africa, and is blocked in China, so there is still much work to be done. Ms. Maher says: “Our vision is a world where every single human being can share in all knowledge.”

As a non-profit, it survives on the kindness of strangers, collecting some $120 million annually in donations, mostly from small dollar donors.  Google, Facebook, and Twitter are all “free” to use as well, but they survive by selling our personal information to advertisers.  Steven Pruitt, a power Wikipedian (some 3.7 million edits!), told OneZero: “If it started selling ads, that alone probably would not get me to leave…But it would change people’s perception of the project. And I think that alone could be problematic.

Ms. Maher added: “What we always say [about ads] is, “Never say never… But no.”

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Co-founder Jimmy Wales described the impetus for Wikipedia:

I'd seen the growth of open-source software, free software, and to me it seemed obvious that you could use the same kind of techniques to build a free encyclopedia, so I was in a real kind of panic because I thought this is such an obvious idea that other people will do it.

So what might someone like Jimmy Wales think was “obvious” about a better healthcare system?  Some possible precepts:

  • Quality, not credentials: sometimes personal experience, such as from patients, is a better source of health information than from “experts.”  Sometimes people with impressive credentials spew false or outdated information.  Quality of the information is more important than quality of the credentials behind it. 
  • Sharing is caring: We spend a lot of money on healthcare.  Some people spend way too much; some people receive way too much.  Too many can’t afford as much care as they need.  There must be a more democratic way to get the right amount of money to the right people for the right care for the right people. 
  • Guide the way: When you have a health issue, the healthcare system often seems like a maze. But somewhere in the world someone has had a similar issue.  Someone knows what the best treatment is, and from whom.  Someone knows what your healthcare journey is likely to entail.  The trick is connecting with them.
  • Open data: I’ve lost count of how many “patient portals” I have.  None has all of my information.  Collectively, the information on them is a fraction of the data that healthcare institutions/professionals have about me.  I should be the central source; I should be the datakeeper; I should share as needed.

Think Wikipedia meets GoodRx meets GoFundMe meets PatientsLikeMe meets Ciitizen. 

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Ward Cunningham, a software developer who is credited with developing not just Cunningham’s Law but also the concept of “wiki,” told OneZero:

I don’t think the future of Wikipedia is guaranteed. But then hardly the future of anything’s guaranteed…But I think there’s a lot of smart people who understand that they’ve built something fabulous.

He’s right; the future is not guaranteed for most things – not even our massive, seemingly intractable healthcare system.  Wouldn’t it be great to have a healthcare system about which we could feel we’ve built something “fabulous?”

Happy birthday, Wikipedia – and many more!


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