Stepping into Being a Panelist

Earlier this October I had the priviledge of being a panelist for the Stepping into Virtual Worlds Conference – Health.  It was a great time, especially having to summerize big parts of Second Life experience on the fly!  While I do reflect upon my time in virtual worlds, it is a good exercise to have to take another’s perspective.

Many thanks to the folks putting on the conference and inviting me.  And a big thanks to those who took the time to attend the panel discussion, I hope it was educational.  I learned quite a bit and met some neat folks.

Posted in Medical Informatics | Leave a comment

Statistics for Second Life Support Groups

I informally gathered some data about Second Life and thought I’d share some findings.  I am in no way a statistician, and my data is not complete, so take this all with a grain of salt.

Support Groups Memberships

Towards the end of September I took the File Cabinet list from SLHealthy and collected all the health care support groups.  In case I missed anything, I used the SL search client inworld to look up all groups with the keyword “support”.  There was about 2000 returned items.   After the first 100 pages, about 1000 groups, I was not able to view any results as they were private.  Of those I did see, I was able to garner an additional 20 or so healthcare groups that were not on the SLHealthy list.  (Yup, I added them to SLHealthy).  So I now have a list of about 150 groups. (A note of caution, some groups do not fit into nice categories. For instance, I counted Wheelies as a support group, but it could be considered more of a night club.)

How Many Healthcare Support Groups in SL?

The first 1000 “support” groups listed got me 150 actual groups. My first speculation is that the other 1000 “support” groups I was not able to view include other healthcare groups.  Of the viewable “support” groups the public healthcare support groups were about 15%.  Since healthcare is a private matter, I suspect that there is an even higher percentage of healthcare support groups in the remaining 1000 private “support” groups.  I’d feel comfortable saying there are about 200 to 300 healthcare support groups within Second Life.  (However, I am a bit leary in that the SL Search showed ‘private’ after exactly 100 pages.  It might merely be a bug in the software.)

The Long Tail…many groups many perspectives.

I also noted the number of members in each group.  When compared to each other, this gave a classic Long Tail as written about by Chris Anderson.  The picture at the top of the post is a bar graph of groups by membership and shows this long tail.  Of the 150 groups only about 25 of them have one hundred members or more.  Towards the thin, but long part of the tail, there are over 50 groups with less than a dozen members.  As Chris explained, the Internet allows folks to publish things cheaply, thus niches that only appeal to a few people and would never be able to make it in old (expensive) media, flourish on-line.  For a healthcare support group this is a boon in that it allows those with rare disease to interact with each other.  But in a bigger sense, it allows folks with unique approaches to their issues to interact with each other.  Thus, we find 19 groups concerning Cancer and 17 groups for Autism/Spectrum disorder.  People are making or finding groups that they feel comfortable in.

How many people are involved?

The groups I collected had a total of about 10,000 members.  However, since each avatar can join up to 25 groups and a person can have multiple avatars I wouldn’t say I have a great handle on how many people are actually involved in these groups.

Who’s issues are represented?

I then took the groups and tried to categorize them.  I decided to use the taxonomy of the American Self-Help Group Clearinghouse. They have been around since the 1980’s, have a database of over 900 support groups, and have their own classification system.

If you look at the number of groups per category as a percentage of the whole you get:

Second Life Support Groups by Category Graph

  • Abuse:  > 1%  (Shown in the graphic to the right in yellow)
  • Addictions 5%   (green)
  • Bereavement 4%   (light blue)
  • Disabilities 21%   (dark blue)
  • Health 49%   (light purple)
  • Mental Health 15%   (dark purple)
  • Miscellaneous 5%   (red)

If you look at particular issues, the ones with the most groups are Cancer (19 groups),  Autism/Spectrum  disorder (17), Addiction and “Mobility” (7 each), HIV (6), and Bereavement (5).

Who’s in the groups?

If we take a look at the number of members in each of the categories as a percentage of the total number of members for all groups, we see a bit of a different breakdown:

  • Abuse:  > 1%
  • Addictions 2%
  • Bereavement 1%
  • Disabilities 24%
  • Health 38%
  • Mental Health 31%
  • Miscellaneous 2%

While Bereavement counted for 4% or the groups, it only has 1% of the total members.  Perhaps this shows that such an issue brings out more varieties of approaches.

Mental Health counted for 15% of the groups but 31% of the total members.  This would seem to indicate the opposite of Bereavement.  Perhaps in Mental Health more people feel comfortable in fewer groups, unique approaches are not brought out.  However, I know that the group with the most members, Support for Healing, has several sub groups within it, that use different approaches, but whose membership is counted in total.

What’s it all mean?

Beyond this discussion, I don’t think my data is clean enough to make any certain pronouncements.  However, in general I think it shows that Second Life (Lyndon Lab’s grid) is full of folks helping each other out, that there is a long tail phenomena, and some issues are more represented than others with different groups trying different approaches.

This was all done in a fairly rushed fashion, and as I said, I am not a statistician.  I plan on taking a much closer and accurate look at the support groups.  Feel free to email me for an Open Office doc of the data.

* These graphs are currently in Second Life at Path Of Support (slurl)

* See also my research with the virtual World IMVU “Healthcare Support Groups in the Virtual World of IMVU

Posted in Medical Informatics | 6 Comments

Online Support Group’s Introduction to Virtual Worlds

If you run a healthcare support group online (be that a message board, forum, IRC,  etc…)  and are wondering about jumping into virtual worlds, I hope the following paper is helpful.

If you are running a face to face healthcare support group and wonder about doing so in a virtual world, this paper may also be helpful.  However, there are some general things about online support I do not address.

If you are looking for an introduction to the basics of Second Life, this is really not the paper for you.  But if you want to know how groups function without going into Second Life, this paper may be a good start.

Healthcare Support Groups in Online Virtual Worlds (Oct, 2009 v.5, 15 page pdf)

If you have suggestions for this paper, please drop me a line, or add your comment below.  I’ve released this under a Creative Commons Attribution-Share Alike 3.0 license and only want it to make it as useful as possible.

**Update Oct 1, 2009-

Added note about GreenLife’s viewer “Emerald” with chat encryption.

**Update Jan 6, 2008-

Added new Linden Lab group features, link to case study, top issues, and more-

**Update Oct, 2007-

Thanks for all the suggestions. I’ve included some at this time, including a list of the 16 most popular healthcare support groups.

Posted in Collaboration / Community, Medical Informatics | 14 Comments

Hipster (hPDA) Podcast

A podcast in your back pocket?

Here it is.

But really… this is demonstrating the ability for paper to carry a digital file.  The free PaperBack application (sorry, Windows only) allows one to translate digital data into an image and visa-versa.

Straight from the Hip” is an 35 kg audio file (about 10 words) that has been compressed, turned into an image, and placed into one of my hipster templates.  Since it is a voice recording, I used the Speex codec to make the voice file as small as possible.

How to Listen:

  1. Print out the hPDA page.  I printed it at 600 dpi.  Be sure not to have the printer do anything extra to the image- for example, no “sharpening”.
  2. Use PaperBack to scan and retrieve the audio file.  Within PaperBack, I set the scan to 600 dpi.
  3. Use a speex enabled audio program to listen to the podcast.  I used the free application SpeexDrop to translate the .spx file into .wav.

Make your own hPDA Podcast:

  1. Record audio.  I used Audacity.  Save as a .wav.
  2. Encode into Speex.  I used SpeexDrop.
  3. Create image with PaperBack.  Within PaperBack, I set it to 200 dpi.
  4. Add image to hipster.  Be careful to preserve the dpi.
  5. Print the Hipster page.  I printed it at 600 dpi.  Be sure not to have the printer do anything extra to the image- for example, no sharpening.

While this seems to be stretching the Hipster idea, that’s what I’m here for, it may prove to more than just entertaining.  One could store other types of files, such as medical records, to-do lists, calendars, etc… things that would be easier to import into a computer from the a digital format.

Stay Tuned!

Posted in Hipster PDA | 5 Comments

Certified.

I’ve finished up my course work at Oregon Health and Sciences University and now am an official Biomedical Informaticist!OHSU Cert. Biomedical Informatics John Norris

It is quite a program.  While I had researched BMI by myself for about a year prior to applying to OHSU, the quantity and quality of content in the courses was almost overwhelming.  I would highly recommend OHSU’s program to those who want to get up to speed fast, or go in-depth.

Some of the best parts, and a bit of a surprise to me, are my fellow students.  There are a lot of clinicians, many of them MDs, even some CMIO’s.   These folks had already been dealing with BMI issues at work, and were a fountain of real world examples and questions.

The certificate was all graduate level courses, and I can apply them to a Masters as well as a Doctorate.  It would be great to continue, but I’m would really like to use my experience and start helping folks out directly.

Posted in Astronomy, Medical Informatics | 2 Comments