New Media Med Blog

Jimmy Wales, co-founder of Wikipedia spoke at Trinity College Dublin last night. I went there to find out about wikinomics. The word wasn’t mentioned once but there were enough clues to how Wikipedia economics works from the philosophy of Jimmy Wales. Wikipedia is a non-profit organisation and is one of the top five Internet sites – enough said on the discussion about whether Wikipedia is a success or not.

He delivered his talk in a very matter of fact unassuming way – not like the big testosterone driven speeches that you get from some of the leader of commercial software companies who either prance around the stage or talk about having the biggest yacht in the world. In fact, it was more like reading s wikipedia article.

Here are some of the things I took away from the talk:

Wikipedia is free – free as in free speech not as in free beer. That’s a key message of the open source movement.

Wales didn’t like using the word crowd-sourcing. When Mark Little asked him about crowd sourcing, Jimmy explained why it wasn’t a good word for what Wikipedia volunteers do because of the connotations with out-sourcing. They don’t do it for the money.

Even though Jimmy Wales is strongly espousing the non-profit, philanthropic message now, he didn’t exactly start out that way in 2000. He wanted to build an online encyclopaedia, Nupedia and he paid people to write articles. In 2001 he decided to switch to the open source model and everything changed.

In the early days he got a lot of encouragement from a lot of the people in Slashdot.org – that’s where the essence of the community came from.

Wales firmly believes in is that generally people will act in good faith – the community usually trumps the very small minority which wants to create mischief. It’s interesting that every discussion that I’ve heard on radio or newspaper about Wikipedia always focuses on the few mischief makers. We in New Media Med have seen the same positive community spirit in an online epilepsy community which we started for James’s Hospital. People are helpful and no-one has uttered anything remotely destructive – even though they could – it’s a free open forum.

There is a commercial side to his business. It’s called Wikia but I didn’t get much enlightenment on how that’s going to work out – although he did say it was growing very fast. That development is pretty much the same as Linux and Apache being used in mainstream commercial enterprises.

Websites such as Facebook and MySpace encourage teenagers to view friendship as a “commodity” and are leading them to suicide, the head of the Catholic Church in England and Wales has warned.

The death of 15-year-old schoolgirl who took a fatal overdose of painkillers last week after being bullied on Bebo is absolutely tragic. However, we should be looking for ways to use social networking to help people who are being bullied or who suffer from depression. There’s no point in blaming social networking. It’s here to stay and used by 95% of tennagers.

When the telephone was first invented, it was viewed with suspicion because of fears of how it was going to be used. Today, where would the Samaritans be without the their helpline in the middle of night? Similarly, social networking can be used for good or bad just like any other medium. Archbishop Nichols should be using this media if he wants to get through to those very young people he wants to reach.

According to recent CSO reports in Ireland volunteering is on the increase again (Irish Times August 1,2009)  and it never actually dipped at all during the time between 1999-2007 when we were all supposedly so superbusy to have any time for each other.  I’ve been to events recently organised for non-profit groups in Ireland to use more social networks.  These events were thronged with charities looking for information about using social networks for their organisations.

Let’s harness this increase in availability of volunteers and use the medium for good.

I read recently in The Irish Times about the  study done by Dr Dylan Evans lecturer in behavioural science at UCC  School of Medicine which showed that people who paid more for drugs felt better.  

It made me realise that the huge unpredictability of people’s behaviour when it comes to complying with the medication or treatment which they have been recommended by their doctor.   Only about 50% of people with long term conditions adhere to the medication recommended by their doctor. While it’s easy to stick to a treatment which relieves pain because our body is screaming at us to take the medication, most conditions and treatments are not like that.  As an example, losing weight is the treatment which most doctors recomend for a whole host of conditions from heart disease to diabetes.  Weight Watchers has been successful because you lose weight with a group of your peers and basic behavioural drivers such as peer pressure, embarrassment and competition motivate people to stay on the wagon. The group therapy practiced by Alcoholics Anonymous and many other addiction drug treatment programs is another example.

Social media approaches such as facebook have huge potential for medication adherence. Social media is already spreading like wildfire for healthcare. There are thousands of facebook and ning support groups for mental illness, epilepsy, weight loss. What may seem new to anoyone over 40 is becoming normal life for the rising generation. 

I would be interested in hearing from anyone who has used social media to help with medication adherence.

I attended a Parkinsons Disease support conference recently and one of the presenters, a doctor, had a lot in his presentation about the way forward was a patient centric approach – especially since Parkinsons means that you need care from multiple disciplines. I asked him what patients’ organisations could do to make the system more patients centric and his answer was that we need more doctors. To me, that didn’t sound more patient centric. In fairness to healthcare practitioners who are usually continuously trying to improve efficiencies and get more out of the day, it is natural for them to see the solution as “more doctors”. But there is a shortage of doctors already and in the next two decades as emerging countries such as India and China beef up their middle classes, the western world will face an even bigger shortage. I replied that because of the health cuts here in Ireland and the shortage of doctors worldwide, it didn’t look like we were going to get more doctors. His solution was that we should agitate for more doctors. Wouldn’t it be much better for patients’ organisations to just get out there and form a community and arm themselves with information and start to help themselves more rather than relying on a cavalry of doctors appearing over the hill at the last minute? Patients who live with chronic diseases know a lot about their disease and the combined knowledge of a crowd of patients would be far greater than what one person can know. So a community where people share information is invaluable not only to others with the same condition, but also to the medical professionals who care for them. This is what Health 2.0 is all about.