Healthcare, 2.0, Social Networking, and Business

As a response to another post over at HIStalk that basically wondered if Healthcare 2.0 and social networking software will help healthcare in the future. I sent in a comment and was published:

From John: “Re: Web 2.0. Web 2.0 and social networking are already playing a role in healthcare. People are helping each other out, providing information and support. It’s happening right now, go and see for oneself. For example, a few quick searches in Facebook finds the group ‘Support the fight against cancer with just a click’ has 1,400,000 members, Autism Awareness has 60,000 members, and ‘Find a Cure For Juvenile Diabetes’ has 27,000 members. Now if by ‘healthcare’ one means ‘the sustainable business model one can come up with to monetize healthcare communities of interests,’ that poses a different question. However, the answer might stem from the large number of folks currently participating in the former notion of ‘healthcare.’” Brilliant and well said. Maybe healthcare as a business has made all of us too cynical about any manifestations of it that don’t come with a big-name CEO or a liquidity event.

I’d link directly to the comment, but am not sure how to do that on the HISTalk site.

No, really, it’s me.

Posted in Astronomy, Collaboration / Community, Medical Informatics | Leave a comment

Privacy Statement in a Virtual Land

Path of Support Bird\'s Eye View

As you wander a lonely virtual landscape, is anyone watching you?  Probably, if the land collect stats.  Should you be told?

As some may know, I maintain the Path of Support on Healthinfo Island in Second Life.* It features almost 100 posters of different support groups. The path includes groups  dealing with mental health conditions, chronic issues, and terminal illnesses.

I am acutely aware that some people, as well as avatars, do not want to be publicly associated with some of these ailments.  This may even be the reason why some join Second Life.  A person can be relatively anonymous behind their avatar.

However, some people’s SL lives are unique enough that close friends or associates may be able to figure out who the real life person is ‘behind’ the avatar.  Further, people may want the avatar itself to have some privacy.  I know some people who do not want to list certain groups their avatar belongs to because others’ may see it in their profile and think less of the avatar (as well as the person.)

It was with this in mind that I designed certain aspects of the Path of Support.  For example, I have a list of the groups in the notecard at the beginning, so that avatars need not be seen near group posters they are not comfortable being by.

To properly understand the utilization of Path of Support, I collect statistics on visitors.  There are a number of outfits and objects/scripts that will do so, and some report the name of the avatar including in real time (ttSLVC, 1902 Essential.)  However, given the nature of the material on the path, I decided to not collect avatar names. I do record that a visitor came by, that they took a note card, and in the case of some posters I am making, where the poster is located.

I now include a privacy statement about my reporting on the notecard at the entrances to the Path of Support.  I wonder if, like websites, more areas will also begin to post similar statements.  Can the HON code be far behind?

*If you have a Second Life client, you can visit the path here.

Posted in Astronomy, Medical Informatics | 3 Comments

Healthcare Support Groups in the Virtual World of IMVU

So, after Lively, I’ve decided to take a look at other virtual worlds besides Second Life.

Abstract: IMVU is an avatar based instant messaging environment. It allows for participation of anyone from 13 years of age and older. There are well over 100 healthcare support groups in IMUV. Many are more informal than those within Second Life, SL, or listed in the American Self-Help Group Clearinghouse, AS-HC. The number of groups and their membership can be broken down into categories, with similar amounts to SL and AS-HC. However, there are some differences, higher Mental Health, lower Disabilities groups and membership, that may be due to to younger demographics of IMVU. There is a long tail effect with a few groups having large memberships, but the majority having only a few members. Group growth rates can also me determined with many starting around the same time, but growing at differing rates.

Quick Overview of IMVU:

IMVU is an Instant Messaging Service (1) with a heavy graphical user interface. It is a 2.5d type space which is room based, one does not really walk around much.  Indeed, the focus on developing IMVU has been on avatars and not land.(2)  IMVU offers free accounts as well as paid. Users can be 13, with parent permission, or over. Users can generate content, and goods can be bought and sold. They currently have 20 million registered users and have been around since 2004.(3) Average User age is younger, perhaps 12-17 (4)

What’s an IMVU health group?

The groups area is well thought out and includes an online discussion forum as well as the possibility to meet up inworld. Groups are assigned to categories. I looked at the “Real Life/Health” groups for my research.(5) Of the 331 groups IMVU listed in that Health subcategory, I identified 142 as being about health. (Some of the group’s details suggested that at one time IMVU credits were given to people if they started a group. If true, and I saw it in several groups’ details, it would skew some of this data.)

I found a large number of seemingly simple ‘chat’ type groups within this health category. Many had no firm theme and only a modest amount of members. I am unsure as to what sort of health issues these should be understood to be dealing with. For 142 health groups I identified, 13, or roughly 10% were such chat groups. I left them out of my beginning analysis.

I attempted to categorized the rest under the American Self-Help Group Clearinghouse’s categories.(6) Some additional groups did not seem to fit, 31, so I left those out at this juncture. I did not see any groups that classified as Bereavement, but several of the chat oriented groups might qualify as they include ‘loss’, and other difficulties. However, I did not include them in the analysis below:

Number of Groups by Category Compared:

For 92 groups, here’s the number of groups, the category, and their percentage:

(Second Life, American Self-Help Clearinghouse)

3 Abuse 3% (SL >1%, AS-HC 3%))

4 Addiction 4% (SL 5%, AS-HC 7%))

11 Disability 8% (SL 21%, AS-HC 7%))

2 Family 2% (SL >1%, AS-HC?))

42 Health 46% (SL 49%, AS-HC 60%))

27 Mental Health 30% (SL, 15%, AS-HC 5%)

? Bereavement ?% (SL 4%, AS-HC ?%)

IMVU Group Types compared to SL and AS-HC

I took the IMVU groups and placed them into the categories used by American Self-Help Clearinghouse. I then looked at the categories as a percentage on the whole. I had done this with Second Life and American Self-Help Clearinghouse earlier (7).

Generally, the same percentages hold across all support group communities. However, IMVU was much higher in the Mental Health category. I am not sure why Mental Health would be so high in IMVU, but have some thoughts on the matter.

Mental Health’s high percentage testifies to the sheer number of Mental Health groups and a variety, of sorts, to their approaches. From looking at the groups, they do not seem to be addressing specific, clinical, mental health issues, say agoraphobia, or depression. The groups seem to be more informally oriented towards addressing people who are not happy, or need someone to talk to. This may be due to the younger demographics than in Second Life. Perhaps the younger community is more interested in talking, or framing their conversations, more informally. It may be that these younger members have these types of issues more than the presumably older Second Life or AS-HC community. It may be that a smaller learning curve draws in more people, diluting the number of people with less formal mental health needs. Also, those that need more formal help may be more willing to learn the complex tools of Second Life, or attend AS-HC meetings, to better have their needs met.

Interestingly, IMVU disability is about the same as AS-HC, and not as high as in Second Life. I will take more of a look at this, below.

Number of Members per Category Compared:

For all health groups I identified, including those not categorized, there are 3288 members. The groups I categorized have a total of 2227 members. I then looked at the percentage of memberships in each category over all 2227 members. In IMVU an avatar can be a member of more than one group. I did not see any limit to the number of groups one could be a member of. Second Life currently limits an avatar to 25 groups.

Here’s the categories and the percentage of membership. (Second Life):

Abuse 4% (SL <1%)

Addiction 1% (SL 2%)

Disability 7% (SL 24%)

Family 4% (SL <1%)

Health 32% (SL 38%)

Mental Health 53% (SL 31%)

Bereavement ?% (SL <1%)

Percentage of total by membership (not 100%)

Membership Totals for Categories Compared to Second Life
Again we see the large interest in mental health. I think the prior analysis holds here as well. Not only are their a lot of mental health groups in IMVU, there are a lot of members involved in that area. This graph may also be explained by the younger demographic and easier tools of IMVU.

Conversely, the Disability membership is much higher for Second Life. My guess is that the advance communication and mobility features of Second Life are of such high value to the disabled population, they are less willing to inhabit IMVU.

Membership in Groups ComparedIMVU Support Groups Membership

As in Second Life, IMVU memberships demonstrate the long tail effect. There are a few large groups, some in each category, but groups with smaller memberships predominate.

(Note: Not all groups are named in the graph)

Top 10 groups by membership are:

Suicide, Depression, and Relationships, 639 members.

<Be Yourself>, 254 members.

Suicide Awareness, 217 members.

Fibromyalgia, 152 members.

Soul ~ Heart ~ Body & Holistic Health, 111 members.

Tickle Me Pink, 91 members.

Pregnant Teens, 83 members.

Straight Edge, 83 members.

Mental Health Survivors, 76 members.

*Helping and Sharing Medical Advises (sic), 74 members.

Groups that have been around longer tend to have more members. However, there are plenty of groups outside of this general rule.
Comparing IMVU Group Growth Rates

IMVU group information also lists when the group was first created. The first group was in August of 2007. We can look at how many groups were created in each week for each category

(Note: Possible promotions could effect this result.)
IMVU Healthcare Support Group Growth Rate
We already noted the differences in the quantity of each category. With this data and graph we have the opportunity to see the growth of the categories as in a timeline.

Four out of the six categories had groups started within the first two weeks. However, their rates were quite different. Health began quickly and was well sustained for a little more than half the period before it slowed. Disability steadily increased its rate during the first third of the period, and then did not do much for the remainder. Mental Health also increased its rate at the beginning, then plateaued, before once again, increasing at the end. Addiction started late and slowly increased the number of its groups. Abuse started at the beginning and added only a few groups during the period. Family came in nearly one third of the way into the period, and did not add anything else.

It would be insightful to see how this corresponded with the general increase of the IMVU population, however, i do not have that information available.

I wonder how the bunching of rate increases are due to IMVU promotions, or just people in the same communities sharing/having the idea to create a group at the same time.

The rates also seem to show that the Health and Mental Health groups found that IMVU is suited their purposes and so continued, whereas the other groups started, but soon found that IMVU  was not their environment.

I am not able to get this sort of information from Second Life at this time. But I would be very curious to see if it is similar. One of the values of such a chart would be to help predict and prepare for support groups moving on their own into new worlds or media.

Discussion

I would like to continue visiting virtual worlds and doing similar research. With the demise of Lively, I want to be sure that we can learn what we can from these places while we have the chance.

IMVU had the added benefit of reporting the group’s start date.  Being able to see, over time, a virtual world being populated by healthcare support groups drew me to this particular project.
EndNotes:

(1) “Instant Messaging Goes Graphical” Daniel Terdiman. Wired 09.16.04 http://www.wired.com/science/discoveries/news/2004/09/64969

(2)”Q&A: IMVU’s Cary Rosenzweig On “Building From The Avatar Up” worldsinmotion.biz 07.28.08 http://www.worldsinmotion.biz/2008/06/qa_imvus_cary_rosenzweig_on_bu.php

(3) “A Message from Cary Rosenweig, Cheif Executive Officer of IMUV” Cary Rosenweig 07.20.08 http://www.imvu.com/about/letter_from_caryjay.php

(4) Couldn’t quickly find demographics for IMVU so used Quantcast estimate. Age that visits the IMVU website. http://www.quantcast.com/imvu.com

(5) I collected group data on Nov. 23, 24 2008. I used the IMVU website’s groups area, going through the 331 groups listed in the subheading “Health”.

(6) “The Self-Help Group Sourcebook Seventh Edition” B White, E Madara 2002 Saint Clares Health Services. (http://www.selfhelpgroups.org/)

(7)  “Statistics for Second Life Support Groups” John Norris.  Oct. 19, 2008. john-norris.net. (http://john-norris.net/2008/10/19/statistics-for-second-life-support-groups/)

Posted in Medical Informatics | 13 Comments

PHR’s and Online Communities

Folks are lamenting the demise of Google’s virtual world, Lively.  There are discussions on how it might have been better integrated with other Google offerings.  I’ll put in my two cents…which I had actually sent to Google as a Lively feature request.

Personal Health Records could be used to drive online healthcare support communities.  The PHR could offer the client to connect them to others with the same issues, or professional help, via online support groups.  The groups could include anything from a listserve, online forum, IRC, or virtual world.

Since the PHR could include diagnosises from a licensed medical practitioner, it could help assure that the client actually has the issue and is not simply pretending.  Along with demographic information, this may help direct the client to the proper groups.  It may also increase the trust of the others in the group.  (Others whos issue is not verified could still be included in the group as well.)

Participation in the groups would need to include the ability to choose anonymous user names, or avatars.

Some meeting spaces could include information specific to the issue being addressed.  This could be “sticky notes” in the case of an online forum, or a complete virtual environment for a virtual world.  Educational as well as social aspects can be tailored for the client(s).

User generated content should be included for a variety of reasons if not only for the possibility of unique and highly specific issues addressed.  With good UGC tools, is it entirely possible that a mostly blank, area automatically created from the diagnosis, may become populated with quality UGC.

It might also be helpful to have the option to include some medical information in one’s profile.  That would allow people to find eachother.  If the system was locked down, healthcare professionals could have their licenses in their profile.  (This is already happening in online forums, just not driven by a PHR as far as I know.)

So this was the idea I proposed to Google, connecting Google Health to Google Lively.  However, the idea is valid for any group willing to go there.

If anyone needs help on that, just let me know.

Posted in Collaboration / Community, Medical Informatics | 1 Comment

KnohOh RIP (Goodbye Lively)

Google is pulling the plug on their virtual world, Lively.  I jumped in early, was not impressed, and spent my time in Second Life instead.  However, lately I’ve been back and have been working on a room.  I’ve come to understand and appreciate a place Lively may have in the diverse mix of virtual worlds.  Before it shuts down, here are some lessons learned.

My room is Healthcare Support Groups (available till 2009) and is meant to educate and assist people inworld about choosing the proper group.  (Much like my work with Path of Support in Second Life. (SLULR))

1) You need a good way to communicate to those who are interested in your work. Since you can’ t be there all the time, the user needs to create something to get the message across.  Lively allows one to link to unfortunately low resolution graphics which I used to create posters…with a link to a website with the corresponding info.

2) The ability to easily put in multiple pieces of streaming media was an eye opener…very powerful content could be shared with one’s visitors.  Since everyone in the room heard the sound, the written word was a better way to go than a voice over.  You can check out the rough video here.

KnohOh in Lively looking at Youtube Video

3) Different worlds for different folks-  The simplicity of Lively taught me that one could still do good work, that would help folks out, even with modest tools.  I can also understand how people put off with the complexities of some virtual worlds may be more comfortable in other environments.

4) Healthcare themes were early pioneers in Lively.  I was not invovled in the beginning of Second Life and there is no way that I know of to track when the groups started there.  With Lively I can see when rooms were created and take a snapshot of how it looks 4 months after it began:

4a.  Today I identified 21 rooms in Lively that deal with healthcare.  I think one could see them as similar to Second Life groups.  With few data points and rooms vaguely defined, it is hard to draw conclusions.  However,  health information / libraries and mental health had the most rooms.  General health and fitness also had a strong showing.

4b. Half of the room were created within the first week, or so, of when Lively began.  While, I recognize several names from Second Life who deal in libraries and larger health sims, the rest may be folks (peers?) may be actually looking for particular help and relationships.

4c.  Most (75%?) of the rooms had only 3 visitors since their inception.  However, the most popular rooms had many more visitors.  They dealt with Mutliple Sclerosis (36 visitors) and addictions (96 visitors).  I count myself lucky to have had 6 visitors in the 8 days I’ve been up.  Pehaps this is similar to the long tail of memberships in Second Life healthcare groups?

5.  Linking between virtual worlds is an intriguing concept.  I  like the idea of being able to go to those areas that have unique features you may want to take advantage of.  In Lively I had a clickable poster with a slurl to the Path of Support in Second Life.

6.  I need to get out more.  I enjoyed my time in Lively, once I decided to do something there.  I was surprised about how many healthcare folks were already there.  I’ll be making more of an effort to look into the various healthcare aspects of other virtual worlds.

Knoh in Lively looking at Youtube video with Knoh Oh of Second Life

Posted in Medical Informatics | 2 Comments