Παρασκευή 16 Μαρτίου 2018

Why is an engineer passionately translating medical content on Greek Wikipedia?

In October 2017 I was admitted to an Athens hospital to have my gall bladder removed. Naturally, I had gone through all the necessary screening, and taken the special precautions due to the fact that I have a VP shunt in my head (meaning, I can't have surgery in a hospital without a neurosurgical ward, which meant the local hospital was out of the question). And naturally, I had read up on the laparoscopy procedure that would be applied. Having examined numerous Greek medical sites, including the cholecystectomy article on Greek Wikipedia, I was wheeled into the operation room in a cheerful mood, knowing that the whole procedure would only take a couple of hours... and convinced I would have no pain or complications and be released the next day, or couple of days at most. Surgery went perfectly well, and soon I was cheerfully chatting away with friends who had come to visit in my room... until around 9 pm, when the anaesthesia wore off and the pain started. Alright, I was expecting pain in the area of the incisions.. but this felt like my right arm was being chopped off at the shoulder. WHAT is this about??? When I asked the nurse, she casually replied:
- "Oh don't worry, it's because the gas they inflated into your abdomen for the laparoscopy is escaping, and pain in the right shoulder is quite common".
-  "Thank you Greek Internet for giving me the whole story", I thought.

Next day, complications set in: bile leak. WHAT is that??? None of the sites I had visited made any mention of it. So, naturally, I looked it up on my smartphone... and got scared stiff. This looked like a serious complication, and it was happening to me, and I had no idea what to expect. But I'm a rational person, so I'm not going to go crazy reading medical journals on case studies of bile leakage: I resorted to my e-mail network of friendly doctors whom I have met along the course of my family's complicated medical history. The friendly doctor told me what to watch out for and reassured me that the quantities of bile leak I was reporting to him were not alarming, but it did make sense that they were keeping me in to be monitored for several days. After a week the leaking stopped, but they had me stay in for another week just to make extra sure I wouldn't be having any issues in the peritoneum, which is where the bile was leaking (and which also happens to be where the shunt drains excess fluid from my brain). I am SO grateful that I had such excellent care from such diligent health professionals of the free and public Greek NHS*.

As the second week I was fully mobile and hospitalization was merely precautionary, I used the free time to start working on a project that I was contemplating for over a year, and which made even more sense after discovering first-hand how lacking impartial and reliable medical information is on the Greek Internet: translating medical content on the Wikimedia Projects into Greek. First step was to contact James Heilman from the WikiProject Medicine group. When we met in Esino Lario in 2016, he encouraged me to help them get the Wikimed offline app available in Greek. The time had come for me to begin.

The "office" I set up in my hospital room at "Red Cross Korgialeneio - Mpenakeio General Hospital" in Athens, Greece. Using my mobile phone and data plan as a wifi hotspot, I started by translating labels and descriptions of Wkidata medical items into Greek.

Five months later and I'm obsessed... I've made over a thousand edits, learned a lot along the way, and almost every day I discover a new reason that makes it even more meaningful .

But surely... wouldn't this kind of work be best assumed by a doctor, or someone in the healthcare field? Not an engineer! "What do you know about medicine?," I've been asked. And then they add the inevitable cliche: "and on Wikipedia? How reliable is a site where ANYONE can edit?"

The answer is: 
quite reliable. More than you may think.

I've been using the Wikimedia projects in my teaching for eleven years, and two years ago I trained mentally-ill patients to edit Wikipedia as an alternative therapy approach (more about Wikitherapy here). One of the main reasons I'm so passionate about the Wikimedia movement is that money-making is not involved anywhere in the process: from the cookie-free, ad-free interface to the five pillars of Wikipedia, this is about as impartial and commercial-free as you can get on the Internet.

So, to go back to the cholecystectomy... I re-visited the Greek article and looked at its history. One of the usernames seemed familiar: bingo, it was the name of the doctor whose site was #4 in my Google search. This surgeon has a private practice, so he needs to "advertise" laparoscopy as being painless and complication-free: the title of his page says "no pain or bleeding". Since he's been editing the Wikipedia article, he's obviously using the same story. 

Obviously, there is nothing I can do about this surgeon misleading people on his personal website... nor is it advisable to remove the content he added to the Wikipedia article, as he's not actually lying: just that he's giving half of the story. What I can do is give the other half. By adding and referencing the pain and complications that I experienced first-hand. Because if I had known the issues beforehand,  I would have been better prepared. So now that I have fully recovered, improving the article is the next priority on my Wikipedia to-do list... because I feel it's my duty to protect future patients who will want the full story.

There is a lot of value that a layman, albeit impartial, editor can add to Wikipedia. And that is why Wikipedia is nothing short of a knowledge revolution. And we need revolutions. Especially in a country that has been devastated by eight years of cruel austerity, and a consequent humanitarian crisis which has led hundreds of people to unemployment, poverty and despair. And if no-one is going to right the wrongs of lacking reliable and impartial medical information on its Internet... I will. On Wikipedia. Where anyone can edit**.

Mina Theofilatou
(User:Saintfevrier on the Wikimedia projects)
Electrical & Computing Engineer / Computer Science Teacher
Kefalonia, Greece

 *why didn't the surgeon who operated on me explain to me what was going on? He did, eventually...  but he's not the kind of doctor who explains. I can pardon such minor shortcomings: doctors in austerity-ridden Greece are nothing short of heroes. They are keeping the national health system - which is public and free to all - alive and kicking under conditions that would make other doctors run away in despair. Often the relatives of patients need to bring bandages and syringes to the hospital, and the waiting lists for surgery are long. But you will never see a Greek hospital closing its door on a serious incident that needs to be treated. Because it's public and free for all. And THAT is why National Health Systems need to be accessible to ALL citizens, and not just a fortunate few who can afford proper treatment. But don't take it from me: take it from the as of Wednesday 3/14 late Stephen Hawking. He said himself that he wouldn't be alive if it weren't for the NHS, which UK officials are now trying to break into pieces and give away to private interests...

** if there's anyone out there with working knowledge of Greek, and who is willing to help me make my mission come to fruition, but lacks knowledge and experience in editing Wikipedia... don't hesitate to reach out to me on my Wikipedia page or on social media. I'd be more than happy to show you the ropes :) 

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