New Media Med Blog

Mark Little asked the panel in the web summit last night for advice on setting up his new venture. The last word of the evening came from Wired Editor-at-Large, Ben Hammersley. He just said “Whatever you do Mark  – Make it beautiful”. We all laughed and Mark was really bemused at having  to tell his colleagues in his startup in the morning to “Make it beautiful”. But when you look back at the evening, there was one common theme running through and it was the passion which every entrepreneur had for their idea such as Chris Horn’s joy of getting the first sale with IONA. That simple theme of “Making it Beautiful” was there throughout the evening. There was Craig Newmark’s passion to keep Craigslist as it has always been and not to sell it. And Matt Mullenweg’s clear core values of democratizing writing and making the writing as good as possible.

People ask me how New Media Med is going to make money and I often get very caught up with all the myriad of tantalising economic models which have emerged in the Internet.

Now I’ve settled on

“We make and sell online communities.”

No more complicated economic models.

And keeping it simple is beautiful.  Thanks Ben Hammersley for that suggestion.

The Irish Times just did a article on the online community which New Media Med built for University College Cork. The online community called “Lose the Blues” is aimed at students experiencing depressive symptoms. The website is designed specifically for 18-24 year olds, who may be experiencing low moods. The community allows users to share their experience and offer peer support to each other within a safe environment.

The website was developed by Aine Horgan, and is part of a research study being undertaken at UCC by Ms Horgan and supported by Dr John Sweeney and Prof Geraldine McCarthy in the School of Nursing and Midwifery. The aim of the research is to see if the website can help improve one’s mood.

By building this online community,  New Media Med gives UCC complete control over their own data which was very important to ensure a safe environment. Having all the data also allows UCC to produce the reports needed for their research. New Media Med provides all the infrastructure for reliable trusted online communities where you control your own data.

Went to simply zesty’s wintercamp on Wednesday – whirlwind tour of how to use social media in businesss from Facebook,Google and more. Full agenda here and Twitter running commentary #szcamp.

It’s all been recorded here on simply zesty’s website. Simply Zesty are a great example for how to use social media.

Things that stood out for me from the meeting were:

Facebook’s priority is to keep their network as a set of trusted friends
UK is better on web content than Ireland – hmmm – and we thought we were the island of saints and scholars

Watch what’s happening in the UK and you’ll see it 3 years later in Ireland
Google’s aim is to get people on to the web as fast as possible so they can sell more advertising
12seconds – video Twitter – record a 12 second video and vweet it

Facebook passed 350 million worldwide  - will it level off before every online person is on facebook?
Iphoto for organising photos on desktop and post to facebook
Urbanspoon find out what your friends have said about any topic
Changing  name of your Facebook page?  - difficult but possible
Facebook’s Privacy policy  changed this week – you will have more granular control of photos
Social search from google is based on your google profile
Google labs has information on different search algorithms
80 reports available in Google analytics – worth checking them all

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.

Collecting data on a human population has become more expensive per head in the past 10 years. Studies have suffered from low response rates and a higher drop-out rates in longer term studies. The reason is that there are many more media of communication thus raising the distraction noise and lowering attention spans.

A study from Sweden in 2008 by Christin Bexelius showed a much improved response from web based research when compatred to Interactive Voice Response (IVR)

Sweden has today among the highest Internet and cell phone penetration in the world, making the population suitable for introducing new technologies in data collection (11). The Department of Medical Epidemiology and Biostatistics (MEB) at Karolinska Institutet in Sweden has since 2001 designed and evaluated several studies using e-epidemiology. In 2003, the first large scale web-based study including 47,859 women in the age group 41-60 was conducted (12). Today, the department has used the Internet for several large scale population-based studies, including an Internet based-hearing test and a surveillance system utilizing IVR and a web-based application. .

Social Media can now be adapted specifically to the needs of the researcher and web-based questionnaires can either be delivered to PC’s or to mobile phones. So could social networks play a role in data collection on a population?

Now that the social media genie is out of the bottle there’s no going back.

Patients are increasingly turning to social networks and discussion forums to discuss medical issues with others who are faced with similar choices such as ” Should I have surgery not?”. People still trust their doctors but they like to have reassurance from others like them. This is not new. People have been getting together to help each in networks such as Weight Watchers and Alcoholics  Anonymous for a long time.

We are well past the tipping point for social media adoption now that Facebook has a quarter of Internet users signed up. The first follow-on industry out of the traps is the supply of metrics for usage and monitoring of social media. Much of the same technology used for measuring and monitoring social media for marketing can be applied in a medical situation – it just needs to be adapted.

So is social media now mature enough to be used by the health services for grouping people with the same medical condition together?

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.

The Leaving Cert Paper is Ireland’s paper based final examination in second level education. On Wednesday, 30 pupils saw the following day’s paper for less than 1 minute due to a very unfortunate error. By the power of social networking,  the majority of students in the country had vital information on an upcoming exam  by 4 o’clock in the afternoon. The word got to the Department of Education by 4 o’clock and they had to postpone the exam. This caused a logistical nightmare for getting thousands of new exam papers out.

Ireland’s 18 year olds are digital natives, they turn to the mobile phone and social networking when they want to communicate so it was a very simple exercise in viral dissemination of information. In contrast, the Department of Education is paper based so it caused a logistical nightmare for them.

It proves to me that the pace of expansion of social networking in healthcare will be driven by digital natives not by changes in government policy. Health Services need to embrace social networking for dealing with all sorts of issues which affect young people such as depression, anorexia, epilepsy, drug addiction and sexual harrassment.

The bebo generation is here and on a mobile phone near you!

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.

Hi

We’ve developed a patients’ social networking community using ning and we are putting together an application to have it approved by the ethics committee in the hospital. It will be a closed community which is only accessible to those who suffer from a particular condition and are being treated in a particular hospital. 

I recently completed the application for the hospital ethics committee so I thought I’d share how I did it for anyone else who is going through the same process of getting a social networking site approved by a hospital ethics committee.

Here are some guidelines:

In order to complete the application to the hospital ethics committee we had to submit a research protocol which describes exactly what the pilot study would do. It needed to include our methods of observation and what analysis we would do. I found a useful document on writing a research protocol in here.
It covers all the possible ethical considerations so it was useful as a checklist for all the possible issues which might arise in the review with the ethics committee

Also I drew on past studies of the use of social networking sites in healthcare situations:

Learning from e-patients at Massachusetts General Hospital

An Online Communication Tool Alters the Way Patients Find Information

Here are recommendations for running a healthcare forum

For anyone else going through the same process these are very useful resources.