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January 31, 2009

Life Outside the Bell Curve

Wearing one of my other hats, blogged over on the limitations of the evidence base:


Posted by pfa at 09:04 PM | Comments (0)

January 25, 2009

"Looking for Twitterers in All the Wrong Places" - One Bad Idea and a Half Dozen Good Ideas

A friend of mine just asked me on Facebook how to find people on Twitter. I flew over via Wall-to-Wall and discovered a thread called "looking for fellow Twitterers (in all the wrong places?)". The first reply said, "What is twittering and are you allowed to do it in public?"

I can't begin to talk about those two questions in the space allocated to either Twitter or Facebook posts, so thought I'd take it outside, over to the blog, and then will bring the blog URL back to the microblogging environments.

Twittering is a kind of chitter-chatter conversation, a bit like a party where it is crowded enough that everyone is involved in a couple overlapping conversations at a time, and you overhear fragments of other conversations around you, sometimes intriguing enough to turn around and start talking to them. I've heard a lot of other descriptions, though, including people who said it is like fishing, like sex, or it is an RSS tool, the social search engine we've all been waiting for, crisis and disaster response technology, and much more. I described some of these in this presentation.

Twitter and Microblogging for Public Health: http://www.slideshare.net/umhealthscienceslibraries/twitter-and-microblogging-for-public-health-presentation

Now, given that one of the questions included the phrase "are you allowed to do it in public?" I better clarify that when folks say that Twitter is like sex they didn't mean like having sex, but more that you can't explain it to someone who isn't doing it. Honest! At least for most folks, anyway. I am sure given how huge Twitter is there is probably someone doing something scandalous with it, I just don't know about it (and please don't tell me).

If you are going Twitter then, well, you do want to do it with folks you like. I could try to beat the analogy to death, saying it is like finding people to date, but frankly I don't think the analogy works there. It would be more like finding people you'd like to be with to study, or go to church, or go for coffee and chat.

Whenever you start a new job or move to a new town there is this time where you haven't met anyone yet or no one asks you to join them for coffee, and you feel really alone. Eventually that goes away, and there are ways to speed that along. Introducing yourself is one way, others include asking people questions, telling folks you like what they're wearing or saying or reading or something like that. A big part of it is listening, and getting the people you meet to introduce you to people they know. Another big part is putting yourself in the same places as people doing the things you like to do -- finding common ground. Here are some tips.

In Twitter there is a "Find People" button. Unfortunately, it does not go to any kind of useful search feature, but is a search users link, and doesn't allow any granularity and special search features. "Search for a username, first or last name," Twitter says. You used to be able to search by keyword, location or topic if they included the terms in their profile, but you can't even do that anymore. This is listed as Zero on my list because even though it is the first thing you should do, I haven't found it very useful.

Use Twitter Search (a.k.a. Summize) to find conversations on topics you love.

Twitter Search: http://search.twitter.com/ OR http://summize.com/

Search the words and ideas you love, look for great tweets, click through and read more by the same person. Was the great tweet a fluke, or do they say a lot of great stuff? If the latter, then follow them. Don't follow everybody, just people saying stuff you really enjoy.

When you find people who are saying a lot of great stuff, look at who they are talking to. In Twitter folks use a convention of the at-sign (@) in front of the account name of the person they are talking to. You can click on that to go to the other persons account, and see if they are saying great stuff also.

Along the lines of joining a club in a new town to meet people, and searching words and ideas you love, join a Twitter group.

Twitter Groups: http://twittgroups.com/index.php

Once you find a group on a topic you like, join it, and browse the tweets for the people who are members of that group to find like-minded souls.

No matter what topics you love, also be sure to include some folks who live near you. This is a good practice for a number of reasons. For one, if they are talking about something on sale, there is a good chance you can get to the same store before they run out. Even better, if there is a weather or health crisis, or traffic is backed up, these are the folks who can help you figure out what's going on. Crisis and disaster response is a HUGE application for Twitter, but you don't want to wait until things go bad to make the connections.

TwitterLocal: http://www.twitterlocal.net/

ArborWiki: List of Ann Arbor twitter users: http://arborwiki.org/index.php/List_of_Ann_Arbor_twitter_users

Michigan Twitter Network: http://www.mlive.com/twitter/

Sometimes you can find Twitter accounts that "collect" people with similar interests. When you find one like that on a topic of interest to you, look at the people who are following it to find people you might want to follow. Here are a couple of examples.

GovTwit (US national, state, and local governments and officials in Twitter): http://twitter.com/GovTwit

MedLibs (Medical Librarians): http://twitter.com/medlibs

BioTecher (biotechnology): http://twitter.com/biotecher

You might find more at Twitter Packs.

TwitterPacks: http://twitterpacks.pbwiki.com/

Chances are by this point you have probably found as many people as you are willing to follow. Just in case you haven't, there are also actual Twitter directories. You know - like phone directories?

TwitDir (currently on hiatus with the owner at a conference) is kind of like the white pages, and Twellow is (you guessed it!) more like the yellow pages as is JustTweetIt. These allow you to browse by category. At this moment in time, Twellow is the richest, but is dated and not always accurate. JustTweetIt has the advantage and disadvantage of being user built, with folks adding their own name and tagging themselves.

JustTweetIt: http://justtweetit.com

Twellow: http://www.twellow.com/

TwitDir: http://twitdir.com/

Enjoy! There is an enormous number of wonderful people on Twitter (as in the world, really). There is no shortage of amazing people with whom to share a few thoughts now and then.

Posted by pfa at 10:22 PM | Comments (3)

Inauguration Story, Part One - From Dawn to Oath-Taking in the Words of Real People

Like the earlier Election Story (still in progress), here I've captured a snapshot of real people and what they thought and said while waiting for and watching the inauguration of Barack Obama on January 20th. I'm working on slides and links for a range of the tech I found involved in the process, although bits of it will be reflected here. A sneak preview? Come back for more.

Posted by pfa at 12:56 PM | Comments (0)

January 20, 2009

Inauguration Links

I am busily cranking away on the inauguration slides, BUT since many of the links I'll be referring to are still active and have live content streaming through the balls and other events, I thought I would share them right now so you can go explore on your own. A few comments mixed in.

The White House website changed over precisely at the drop of 12 noon, Just before Obama started his speech. I pulled the site up on my laptop and waved the screen at the crowd of people gather to watch CNN's broadcast in the Med School's LRC lobby. Amazing. There is a new back end, new social media integration, blogs, RSS, and a variety of aspects that have geeks everywhere raving and ranting. More on that later.

White House: http://www.whitehouse.gov/

OMG! We now have a White House YOUTUBE Channel! I am the 85th subscriber. Brand new. WOW!!

Youtube: White House: http://www.youtube.com/user/whitehouse

Links to info and resources being promoted by the Obama team. Many of these offer ways you can be involved. Notice Obama's campaign Twitter account is live again, after going dormant immediately after the election.

USA Service: http://USAservice.org/

Twitter: Barack Obama: http://twitter.com/BarackObama

Twitter: Obama Inaugural: http://twitter.com/obamainaugural

PhotoBucket: Obama Photobook: http://photobucket.com/obamaphotobook

Flickr: Inauguration: http://www.flickr.com/photos/inauguration

PIC: Photos: http://www.pic2009.org/blog/entry/tumblr#

PIC: Blog: http://www.pic2009.org/blog

The BBC is hosting a video of Maya Angelou saying what she thinks is most important for Obama to hear. There are similar videos from a variety of people, including white collar, blue collar and even children.

BBC: Maya Angelou: http://news.bbc.co.uk/2/hi/programmes/world_news_america/7838941.stm

A fun graphic.

Blogumentary: Happy Obama Day: http://blogumentary.typepad.com/chuck/2009/01/oh-yes-long-time-coming-happy-obama-day.html

This was up, on the web, live, from a citizen journalism site, within SECONDS after the speech broadcast on CNN. They must have had someone taking dictation and typing it up as fast as he spoke.

NowPublic: Full Text - President Obama's Inauguration Speech: http://www.nowpublic.com/world/full-text-president-obamas-inauguration-speech-2009

One of several sites collecting links to various ways in which social media are being used to track inauguration events and provide minute by minute reporting and coverage.

Inauguration 2.0: http://www.othersidegroup.com/adcomments/2009/01/inauguration-20/

CNet: How to watch Obama's Inauguration and Parties Online: http://news.cnet.com/how-to-watch-obamas-inauguration-and-the-parties-online/

LifeHacker: Inauguration: http://lifehacker.com/tag/inauguration/

iPhone + Inauguration

TechCrunch: Watch the Obama Inauguration with your iPhone: http://www.techcrunch.com/2009/01/16/watch-the-obama-inauguration-from-your-iphone-with-ustream/

Widgets available to embed content in your website. Also check many of the web streams, which also have embedding available.

Inauguration: Inauguration Report: http://inaugurationreport.com/

Inauguration Report: Widgets: http://inaugurationreport.com/widgets/

Streaming and live reporting available over the net, many of which will continue with the inaugural balls. The fun isn't over yet!

Ustream: http://www.ustream.tv/

Current/Twitter: Inauguration: http://current.com/topics/88852690/inauguration/new/0.htm">http://current.com/topics/88852690/inauguration/new/0.htm

Hulu: Obama Presidency: http://www.hulu.com/spotlight/obamapresidency

Senate: http://inaugural.senate.gov/index.cfm

Presidential Inauguration Committee (PIC): http://www.pic2009.org/content/home/

Neighborhood Ball Party: http://www.pic2009.org/page/content/neighborhoodballparty

MSNBC: http://www.msnbc.msn.com/id/27721638/

CBS: http://www.cbsnews.com/stories/2009/01/08/national/inauguration09/main4707733.shtml

Joost: http://www.joost.com/024o8pj/t/Joost-Presents-Everything-Obama

ABC: http://abcnews.go.com/politics/president44

CSpan: http://c-span.org/Watch/C-SPAN_wm.aspx

CNN: http://www.cnn.com/live/

Washington Post: http://voices.washingtonpost.com/inauguration-central/

NY Times:

LiveStation: http://www.livestation.com/inauguration

USA Today: http://usatoday.com/

Associated Press (my fave so far): http://ap.org/

CNet: http://news.cnet.com/8301-13578_3-10144141-38.html?tag=mncol;posts

A couple non-US sources.

CBC: http://www.cbc.ca/news/?refresh

BBC: http://www.bbc.co.uk/

Very interesting, but not available just yet I think, a 3d zoomable display of this particular moment in time. Send in your photos if you were there to help make rendering accurate.

CNN; The Moment: http://www.cnn.com/SPECIALS/2009/44.president/inauguration/themoment/ OR http://cnn.com/themoment

MORE Citizen journalism and reporting the inauguration.

Inauguration Report: http://inaugurationreport.com/

iReport: Inauguration: http://www.ireport.com/ir-topic-stories.jspa?topicId=180017

CitiMediaLaw: Documenting 2009 Presidential Inauguration: http://www.citmedialaw.org/legal-guide/documenting-2009-presidential-inauguration


Mashable: Obama Inauguration Speech Generator: http://mashable.com/2009/01/15/obama-inauguration-speech-generator/

ATOM: Inauguration Speech Generator: http://www.atom.com/spotlights/inauguration_speech_generator/

Attack Ad Generator: http://attackadgenerator.com/

Daily Show: http://www.joost.com/home?playNow=024o8pj#id=076iunv

Make a Do-It-Yourself Inauguration Souvenir: http://blog.wired.com/geekdad/2009/01/make-a-do-it-yo.html

Is Obama President Yet: http://isobamapresidentyet.com/

Aggregated Searching.

IceRocket: http://www.icerocket.com/search?tab=buzz&lng=&q=inauguration&x=10&y=17

Blogs etc.

"Today, we inaugurate the first president to ever own a BlackBerry, to ever have a Twitter account, and to ever use the Internet to build and win a grassroots campaign. Obviously, hopes are high among those of us in Ed Tech for a very different sort of presidency when it comes to education funding."

Tumblr: Inauguration Photos: http://inauguration.tumblr.com/submit/photo

Tumblr (another fave): http://www.tumblr.com/search/obama

One of the many responses from around the world. This was sent as a link on Twitter tagged for the inauguration.

Obama Hindi Song: http://www.youtube.com/watch?v=-KvDg_a2Kf8

Posted by pfa at 02:56 PM | Comments (1)

January 19, 2009

Telling the Election Story Through Social Media

There has been a lot of buzz about the incredible use of social media in the Obama campaign. Meanwhile, here I am sitting over in my cubicle doing this, that, and the other thing to try to inform the campus and especially the health schools about the potential of social media for productive functions. I started thinking maybe this is one of those times when a picture is worth a thousand words, or where a parable -- telling the stories -- gets the message across better than spelling it out.

Sounds like a brainstorm, eh? And what story has been more foremost in our thoughts for the past couple months than (a) the election and (b) the economy. Living in Michigan, the economy is too depressing for me to want to spend a lot of time thinking about it. So I spent a bunch of time during the past couple months capturing screenshots and browsing social media. I do that all the time anyway as part of my job. When I saw something relating to the election, reacting to it, or leading up to the inauguration, I grabbed a snap, and sometimes a link as well. You can find the links here:



I tried to be nonpartisan -- to show the whole story (barring expletives and graphic rudeness). I tried to give enough information in the images that people could find the original, but in some cases the original has disappeared since the time I captured the screenshot. I did not capture all the links, simply because of the labor involved. The plan is to have several sections for this:
- Part One: Early Vote, Election Day, Results, Announcement, Immediate Responses
- Part Two: November - Elation and Depression
- Part Three: December - Getting Used to the Idea
- Part Four: January - Inauguration Preparations
- Part Five: Inauguration

That's the idea, I don't know if I will really pull it off. Today, I do have for your viewing pleasure, Part One. Take a small step back in time, and relive the excitement and uncertainty of Election Day 2008.

Slideshare: UMHealthSciencesLibraries: Election Story, Part One: http://www.slideshare.net/umhealthscienceslibraries/election

Posted by pfa at 11:22 AM | Comments (0)

January 12, 2009

Gadgets: SleepTracker

Almost always, the resources and topics covered in this blog are free and are online resources. I don't expect to make this a regular feature as there are other places that beautifully collect and review nifty new tech gadgets. Someday I'll do a separate post about how to find other cool toys like this.

Today, I just wanted to mention SleepTracker. You see, I think mentally I've been a little slow, in part because I tend to work too hard, too many hours, in too many places, and don't get enough sleep. Not to mention that I wake up at the drop of a hat, and usually wake before the alarm goes off. I've been like that at least since high school. I am going to use that chronic fatigue and resultant mental fog as an excuse for thinking SleepTracker is interesting and also for not initially thinking of its potential for health applications.

First off, what is SleepTracker.

SleepTracker: http://www.sleeptracker.com/

Gadgets: SleepTracker

Sounds pretty interesting so far. I noticed this a couple months ago, and thought, "Wow, I wish I could afford one of these; what a neat idea!" I kept seeing it, and kept thinking about it. So what does it do?

Gadgets: SleepTracker

Track your sleep patterns, store the data, allow you to download it to your computer, and then select the optimal wake time and send the alarm to either an audible or vibrate alarm on your wrist.

Today I sent the link to a friend of mine who is a doc (Hi, Holly!), who replied observing it might be helpful for folks with sleep apnea.

Oh, duh.

Right. Health application. Have I been asleep or what?

My son has sleep apnea, my ex has sleep apnea, my mom has sleep apnea ... probably my dad and some of my sibs, too, but who knows? I have a good friend who has insomnia, pretty bad case of it, and my daughter accused me of having it also. (I say I don't, and just had trouble sleeping with a snorer in the same room.) I know several kids who had sleep terrors when little (nasty business). Other sleep disorders include narcolepsy, restless legs syndrome, sleep walking/talking, grinding your teeth, sleep hypnea, and more. Then there are folks who are tired or fatigued for other reasons -- fibromyalgia, anemia, etc. Sleep disorders are associated with several childhood behavior disorders as well, such as ADHD and autism spectrum disorders.

So, what about this nifty gadget, the SleepTracker? Well, a couple of thoughts. First off, those doctor-prescribed diagnostic sleep tests are a royal pain -- complicated and expensive. You have to go into the hospital overnight, they hook you up with a bunch of electrodes on you legs, chest and scalp. It is messy. Not to mention the breath-sensing tubes. This is what it looks like (my daughter's drawing of my son's test.)

Z's: Sleep Test Rendering

He was miserable, to put it mildly. To be fair, my mother never minded her sleep tests.

Well, the SleepTracker is pretty pricey for an individual at $179 for the most useful version of the tool, but for insurance purposes, that could be a whole lot cheaper than paying the hospital and staff for the overnight stay that is now the preliminary screening of a sleep disorder. I could see lending a SleepTracker to a patient to wear at home for a week, uploading the sleep data to a central site for clinical review. That would just be for the data collection function of the gadget.

I assume it really does work for the other side of the function -- waking you up at an optimal time, which means it would be therapeutically useful for people with sleep disorders. If folks are waking up less tired, they might gradually find it easier to sleep at night. Good sleep can also help control and prevent seizures in susceptible people, as well as stress, anxiety, and other health issues. The first thing they tell you to do for treating a sleep disorder is to follow good sleep hygiene -- no caffine, no alcohol, a standard sleep schedule.

Sleep Education: Preventing Parasomnias: http://www.sleepeducation.com/Topic.aspx?id=62

Getting good quality sleep can help prevent and sometimes even cure a sleep disorder. In which case, the cost of a tool like this could easily pay for itself. What do you think? Would insurance cover this? Probably need more research, but there are articles on home monitoring of sleep disorders using both wrist and finger actigraphy, so there is some real potential here.

Now, I'm sure the sleep specialists are already aware of this, and obviously have similar tools. It is great to see something like this being made available to the general public. If you are someone lucky enough to be able to afford this on your own, it might help either provide useful data to your clinician or might help you self-manage sleep problems to prevent any kind of sleep disorder that would require medical assessment or intervention.

For more information on sleep disorders, check out:

MedlinePlus: Sleep Disorders: http://www.nlm.nih.gov/medlineplus/sleepdisorders.html

National Sleep Foundation: http://www.sleepfoundation.org/

Sleep Education (American Academy of Sleep Medicine): http://www.sleepeducation.com/

Posted by pfa at 08:59 AM | Comments (1)

January 10, 2009

WATCH THIS - Obama Healthcare Reform Community Meeting In SL - Youtube Report

The Obama-Biden Transition Team has been asking for feedback, input, and information from a large number of stakeholders and communities on important issues. On December 5th Tom Daschle put out a request for citizens to host community meetings on Healthcare Reform to provide input to the Transition Team. The following video is a brief overview (4 minutes) of a 3 hour community meeting in the virtual world of Second Life. It highlights comments from a few of the participants from divergent areas of the USA, describes the context and process of the event, and explores how the use of social media made the discussion more inclusive of people who might otherwise not be able to participate. I encourage you to watch this video.

Posted by pfa at 11:22 AM | Comments (0)

January 07, 2009

Mobile Healthcare Education

I just stumbled on an old message I had missed that mentioned this presentation. Entirely my fault that I hadn't seen this sooner!

This is a very intriguing approach to using Twitter, mobile technologies, cell phones and related tools to fill academic functions. This ranges from emergency callouts to managing class activities and assignments. Extremely interesting!

Posted by pfa at 07:26 PM | Comments (0)

Science 2.0 - Communities in Science Blogs & Gender Inequity in Science

This isn't the prettiest slideshow I've ever seen, but it does a good job of proposing a methodology by which to analyze the existence of communities represented and created by science blogs. I found two points particularly interesting.

One, the definition of how "science blog" is defined, and would very much like to see the list of science blogs included in the analysis - rather like a systematic review. I checked her website (http://terpconnect.umd.edu/~cpikas/ScienceBlogging/index.html) but perhaps she isn't quite ready to share that sort of information about her methodology. Maybe after it is published?

Two, that the commenting/co-citation behaviors are very different across genders. I find that not unexpected, but provocative for several reasons, raising many more questions than it answers. Is it simply that women tend to be more social in general? Is it that women tend to be minorities in science and need to support each other more in the absence of other local supports? Is the same true of other minorities in science? What does this say about gender inequities and recruitment/retention in science? Are men missing the potential of Science 2.0 applications in their own research work? Will the emergence of Science 2.0 provide a springboard to shift domination of science research across the gender divide?

Posted by pfa at 09:33 AM | Comments (0)

January 05, 2009

What I Did On My Winter "Break"

Obama, Obama, Obama ....

Did anyone else get involved with local community meetings for the Obama-Biden Healthcare Transition Team? Oh, you didn't hear about them? When I tell folks what I did for the past couple weeks, I hear from a lot of folks who weren't aware of Daschle reaching out to the American people for thoughts on how to improve healthcare in the United States.

Obama Transition Team - Daschle Healthcare Reform

Join the Discussion: Former Sen. Daschle responds on health care: http://change.gov/newsroom/entry/join_the_discussion_daschles_healthcare_response/

This initial discussion in early December was a provocative and interesting event itself. Daschle answered questions about many leading healthcare policy concern, the video was made widely available online, and public discussion ensued.

Obama: Daschle Healthcare Reform Discussion

After about 3500 comments, they started to analyze the discussion (after five thousand or so, they closed comments). One of the tools used was Wordle, which distilled out the 100 top words used in the conversation. Notice the biggest one? Insurance. I don't think that is a surprise to anyone, but I am surprised by some of the words I don't see present -- access, transportation, information, choice, rural, seniors or elderly, and much more. Some words are present, but a lot smaller than I expected -- children, change, available, service/services, free, etc. Oops - etc was present in the Wordle as a word, which sort of skews the results -- this would have been more useful with a filter to exclude generic words like etc, enough, done, going, getting, and such.

Obama Transition Team - Daschle Healthcare Reform

Top 100 Words in Healthcare Discussion (from Wordle): http://change.gov/page/-/images/wc_healthcare_full.PNG

Well, the upshot of all this was that on December 5th, Daschle put out a call for USA citizens to partake in the discussion through small group discussion events hosted in your local community. These were all to take place between December 15th and December 31st. Personally, this put a big hole in my so-called "break", but it was important to happen and important to partake when possible. I just wish the timing had been a little different.

Daschle asks Americans to help reform health care: http://change.gov/newsroom/entry/daschle_asks_americans_to_help_reform_health_care/

Most of these took place in people's homes. Most of the events I heard about happened through personal networks - sort of work of mouth from friend to friend. They were not necessarily open to the general public or to walk-in visitors. As a single parent of a special needs kid (you've heard this before if you read this blog often), getting out and about town is hard for me. Basically, not likely to happen. I don't think I was invited to any of the events in people's home. Some of my friends were, but they had so many obligations relative to the holiday season that they did not participate. I was thrilled to hear about first one, and then later two more events that were happening through social media.

The first event was for the autism community and was held via Twitter. This wasn't the only event for the autism community - there was another on Staten Island and in Virginia (see comments), and probably more I didn't find out about. The Twitter one was organized through Causecast, a sort of a social network for "registered 501(c)(3) non-profit" organizations. But I couldn't go to Virginia or New York, and wouldn't have even if the events have been open nationally. In theory, I could have sponsored an event locally in Southeastern Michigan, and probably could have gotten some folks to come. Still, there are a lot of people on the spectrum who are not very comfortable in social situations and who would either have felt excluded by the venue or found it stressful to participate in real life. Having an event online made it possible to include a broader range of participants, with some interesting discussions that happened specifically about the geography of access to care for autism treatment. This type of discussion would have been unlikely or impossible in a face-to-face event. You can read more about the Autism & Healthcare Reform Twitter Day in another blog post.

Autism & Healthcare Reform - The Twitter Event for the Obama-Biden Transition Team: http://mblog.lib.umich.edu/etechlib/archives/2009/01/autism_healthca.html

Because the organizer of the autism event (@TannersDad) describes himself as a "paper and pencil" kind of guy, and because after several nudges no one else volunteered, and because I believed it was important, I ended up being kind of behind the scenes tech support to try to archive the tweets for the event (with help from @ajturner). I finished up everything for them on January 2nd.

In between, there were two more events, both in Second Life. The first one was held on December 29th in Port Spinoza, coordinated by Siri Vita (one of my neighbors in SL), and was an open general meeting about healthcare reform without a specific target audience. The event was held primarily in voice (audio over the internet within Second Life) and was videotaped. There is actaully going to be a really wonderful video of the event for the Obama Transition Team, which I will share when it becomes available.

SL: Port Spinoza: Obama Transition TeamSL: Port Spinoza: Obama-Daschle HC Transition Team
SL: Port Spinoza: Obama Transition TeamSL: Port Spinoza: Obama-Daschle HC Transition Team

For that event, I helped out by offering voice-to-chat transcription in order to make the even more accessible to people with disabilities, and Cotton Thorne (another neighbor) did the reverse -- read chat comments into the voice record for the event. This made it possible for people with a blend of sensory abilities to be able to attend as full participants and still have a complete record of the event. To make it even more fun, there were a lot of Justice League members who attended. After all, they work hard to help keep life smooth for people, both in fiction and in Second Life, and like all good hearted people are well aware of the importance of health and healthcare in making a good life possible. (My son was really excited to see the Green Lantern there, who shared with us that he has heard there will be a live-action Green Lantern movie coming out in the next 3 years.) They were back in for the final closeup shots for the video on Sunday for a couple hours, just for color, with the original event having lasted well over two hours. I was glad the Sunday event was in the afternoon, since the first SL Obama event was timed for the West Coast crowd, making it after 1am before I was able to go to bed.

The final event in which I participated was specifically for the large community of people with disabilities in Second Life and occurred on December 31st in the evening. The structure of the event was very different - they had small groups at several different tables, with a group of coordinators and facilitators -- they had a greeter, a couple guides, a facilitator at each table, and a timekeeper who clocked the discussion questions and kept the various groups on task and on target. The facilitator at my table old us she was deaf, and that this was why we needed to converse in chat (typing). My arms were still sore from all the typing the other night, which maybe slowed me down a bit. This was the first time for me that I was able to participate as a participant instead of as organizational help and background support.

I can honestly say I learned a lot from participating in all three events, and cannot imagine how the information from a nationwide clustering of these types of events will pull together for the transition team. Talk about an embarrassment of riches! I will be reporting out in future blogposts about some of my thoughts and observations from being part of these events. One of the biggest take-home points for me is what I've said about both accessibility and healthcare for years -- there is NO one-size-fits-all.

Posted by pfa at 12:19 PM | Comments (0)

January 04, 2009

Twitter Phishing Scam Fiasco

People are always asking me questions about security in online social media, and about how to manage passwords if you can only remember so many. Well, this is not an answer, but is instead an example of when it goes wrong and that problems do happen. Twitter seems to have been, well, compromised.

Posted by pfa at 09:47 AM | Comments (0)

January 02, 2009

Monetizing Twitter - Karl Long's Proposal

Karl Long has posted a proposal to monetize Twitter (make it financially self-supporting) by asking for more money from people who follow lots of other people. You can read his blogpost here:

Experience Curve: Twitter Business Model To Improve Twitter: http://experiencecurve.com/archives/twitter-business-model-to-improve-twitter

He asked for comments, and I tried to comment, but his blog wouldn't allow me to post my comment, so I am going to put it here, and see if I can post a much shorter comment that links to this.


I have mixed feelings about this. I agree that monetizing Twitter would be a good thing. I agree that I am willing to pay, to a certain extent. I do not agree that paying by number of followers is necessarily the solution.

If my office paid for me to twitter, then I would have no problem with the idea, at least on my own behalf. As it is, I depend heavily on Twitter and similar tools to do my job, but with the understanding that my employer is struggling financially and that services such as Twitter are unlikely to be funded. Period. You may notice that virtually everything I talk about on my blog is free or points to someone else's information. I don't put money into the tech, and I don't have a budget to do so.

I follow a lot of people on Twitter because I have a lot of interests. I have a blend of folk I follow for personal interests & relationships and those people and organizations I follow because they tweet on one of the many topics that are professional areas of responsibility for me. I find if I try to divide Twitter into a professional and a personal account, I end up hating it. Ugh. I tried it -- didn't work for me. I needed the serendipity, synchronicity, spark and juice that comes from mixing it all up. One of the things I like to do is look for creative and innovative ways to use Twitter. Please, don't penalize people for being innovative.

I suspect that this proposed funding model is based on an assumption of how people are *supposed* to use Twitter. Ahem. Where is the fun in that? I (obviously) am not using Twitter the way most folk do. I do not make the slightest attempt to read every tweet by every person I follow. I know a lot of folks who assume that is what everyone does, and they feel guilty if they don't, if they miss something.

Well, I don't feel guilty about it. I graze Twitter. When I'm hungry or have time on my hands, I spend a lot of time on it; when I'm not, I don't. I try to check it a couple times a day, and reply to @replies and DMs. I use Ping usually to send my tweets, except in conversations. I trust that the really important bits will be picked up by more than one person and will float to the top of the stream, that I will see them even if I don't watch all the time. A friend of mine just figured this out and started to use Twitter more like I am. Check his blog post on this:

Ed Vielmetti: How I Stopped Worrying and Learned to Love Twitter: http://vielmetti.typepad.com/vacuum/2008/12/how-i-stopped-worrying-and-learned-to-love-twitter.html

We've all seen accounts from people who are paid to tweet. They have those really boring accounts that repeat marketing news for their company all day long. To keep it lively, you *need* to mix it up -- establish personal relationships, have quirky conversations. The sort of things that are hard to explain and justify to an administration watching the bottom line.

So I would have to pay for this myself, when it comes to it. I did that with Flickr. I use Flickr also about half and half job/personal. I pay ~$25 for two years. This was a personal indulgence and reward. So far Flickr is the only online tool that I have actually agreed to pay for. I am a single mom of a special needs kid. My house deserves a better keeper, if you get my drift. I am not going to pay if Twitter starts to penalize me for using it fully.

Actually, Twitter has already capped my following at 2K, and I find it really frustrating. I am thinking of how to find work arounds. I have this ever growing list of people I want to follow, but can't follow because of the cap. I spent a lot of time the past couple weeks digging through the folks I follow to unfollow some in order to add new ones. I am thinking of how to set up rss feeds for the folk I want to follow aggregated by area of interest. You know -- give up on using the following at all. I am also switching to using the search function a lot more, and switching to FriendFeed, just like Scoble does. Twitter locks us down, fine - we won't use it. Make it hard to use, I'll move. I was one of the victims last summer of Twitter mismanaging their spam blocker. (They deleted accounts for me, @conniecrosby, @davedelaney and a bunch of other folk: http://mblog.lib.umich.edu/etechlib/archives/2008/08/twitter_banning.html). I am not inclined at this point to depend on Twitter or trust them to manage things properly. I like Twitter a LOT, but if they started charging based on following, that would probably be the straw that breaks the camel's back.

Not to mention that it is easy as anything to work around this. If you tell folks it is free under 1000 follows, the spammers will just make a gazillion accounts and push the same stuff to all of them. They aren't going to pay. Whatever limit you set, they will find a way around it. I don't see this model as a solution for twitter spammers, since it is so easy to work around.

OK, so I think that won't work. What would I like better? Well, actually, I like the Flickr model. Flat rate, modest accessible fees. Free for *minimal* use (number of pics posted or tweets sent). The heavy users are the ones that drive the community - don't penalize them, don't drive them away. Personally, I am less concerned about the spammers, because I ignore them. They follow me, I don't care. I don't look at them, I don't follow them back. There might be a few buried in my earlier follows when I followed everyone back, but if I notice them, they are gone. Who cares if someone follows thousands of people if no one follows them back? No one is listening to them, so where is the harm?

Posted by pfa at 06:10 PM | Comments (0)

Autism & Healthcare Reform - The Twitter Event for the Obama-Biden Transition Team

Crowdsourcing at its most relevant, this is about the outcomes of the innovative community discussion held for the autism community via Twitter on December 23rd 2008 in support of the initiatives of the Obama-Biden Transition Team under the oversight of Tom Daschle. Links listed at the bottom are from the slides.

Part One includes introductions, challenges, wishes, and the importance of location in receiving care in the USA.

Part Two includes discussions on service, insurance, and education.

Part Three includes research, resources discussed in the event, and suggestions for governmental involvement or oversight.


Where It Started

Autism & Health Care Twitter Day, December 23, 2008Autism & Health Care Twitter Day, December 23, 2008


In-Home Services

This was a provocative topic to many of the people involved in the event, as that awareness of the possibility of assistance for provision of in-home services was minimal, and awareness that parents could be paid for providing in-home care to their disabled child in place of out of home employment was entirely new to most. The parent who was doing this, Bonnie Sayers, provided extensive information and resources about it. Further digging revealed that this is possible in only a few states in the country: California, Massachusetts, North Carolina, Pennsylvania and Wisconsin (State-Based Initiatives to Improve the Recruitment and Retention of the Paraprofessional Long-Term Care Workforce).

California: Department of Developmental Services: Information About Regional Centers: http://www.dds.cahwnet.gov/RC/Home.cfm

California: Department of Social Services: In-Home Supportive Services: http://www.dss.cahwnet.gov/cdssweb/PG139.htm

State-Based Initiatives to Improve the Recruitment and Retention of the Paraprofessional Long-Term Care Workforce (Institute for the Future of Aging Services, Paraprofessional Healthcare Institute): http://aspe.hhs.gov/daltcp/reports/pltcwf.htm

US. DHHS. In-Home Supportive Services for the Elderly and Disabled: A Comparison of Client-Directed and Professional Management Models of Service Delivery (Doty et al): http://aspe.hhs.gov/daltcp/reports/ihss.htm

United Domestic Workers of America: Statewide Information on IHSS Wages, Contracts and Unions: http://www.udwa.org/statewid.htm

California Disability Community Action Network: IN-HOME SUPPORTIVE SERVICES (IHSS) ISSUES: http://www.cdcan.us/IHSS/index.htm

Protection & Advocacy, Inc: IHSS FAIR HEARING AND SELF-ASSESSMENT PACKET: http://www.pai-ca.org/pubs/501301.htm

Protection & Advocacy, Inc: IHSS ISSUES - PROTECTIVE SUPERVISION (Revised January 2000): http://www.pai-ca.org/pubs/527601.htm

Disability Rights, California: In-Home Supportive Services, Nuts & Bolts: http://disabilityrightsca.org/pubs/547001Index.htm


Discussion about research made it clear that there is substantial lack of agreement about the causes and best practices for treatment for autism spectrum disorders. In addition, what information or medical consensus is available is largely unclear to the ASD community, especially parents making decisions for their children. The links below include information about proven, contested, unreliable, and emerging approaches that were discussed or mentioned during the event. There is no implied endorsement of any of the resources listed. There was a call from the ASD community at this event for coordination of research findings and dissemination of results in a coherent fashion to stakeholders.

Australian Government: Department of Health and Ageing: A review of the research to identify the most effective models of practice in early intervention for children with autism spectrum disorders: http://www.health.gov.au/internet/main/publishing.nsf/Content/mental-child-autrev-toc~mental-child-autrev-comp~mental-child-autrev-comp-che

Healing Threshholds: Autism: Novel Treatments for Autistic Spectrum Disorders: http://autism.healingthresholds.com/research/novel-treatments-for-autistic-sp

Chew, Kristina. Another Autism “Treatment”: Stem Cell Therapy. Autism Vox. July 12, 2007. http://www.autismvox.com/another-autism-treatment-stem-cell-therapy/

STEM CELLS: THE FINAL PIECE OF THE AUTISM PUZZLE? Age of Autism. July 11, 2008. http://www.ageofautism.com/2008/07/stem-cells-the.html

Stem Cells for Brain Injury Recovery? Age of Autism. January 2, 2009. http://www.ageofautism.com/2009/01/stem-cells-for-brain-injury-recovery.html

Ichim et al. Stem Cell Therapy for Autism. Journal of Translational Medicine 2007, 5:30. http://www.translational-medicine.com/content/5/1/30

2007 Fall Rimas Autism Dolphin Therpay (sic): http://www.youtube.com/watch?v=CMpunLzaccE

Hyson, Michael T. Dolphins, Therapy and Autism. Planet Puna, Sirius Institute: http://www.planetpuna.com/dolphin-paper-html/dolphin-paper.htm

Research Autism: Dolphin Therapy: Basic Level: http://www.researchautism.net/interventionitem.ikml?ra=64

Research Autism: Dolphin Therapy, Advanced Level: http://www.researchautism.net/interventionitem.ikml?ra=64&infolevel=4&info=researchstudiesincluded

Research Autism: http://www.researchautism.net/

Research Autism: Alphabetic List of Interventions: http://www.researchautism.net/alphabeticalInterventionList.ikml

Other Resources Shared

One of the blessings of the two Autism Twitter Day events has been the intense sharing of information and resources among the community members. While the resources were shared by autism spectrum disorder (ASD) community members for each other, the ones listed below were mentioned during the event for the Obama-Biden Transition Team, and may potentially be useful for decisionmakers seeking to better understand the needs of the ASD community.

Autism Hangout: Podcasts: Adonya Wong - "Key Learnings of Autism Thought Leaders": http://www.autismhangout.com/news-reports/feature-programs.asp?id2=80

Age of Autism: http://www.ageofautism.com/

Toast on the Ceiling: Where Was This Book When I Needed It?: http://toastontheceiling.blogspot.com/2008/12/where-was-this-book-when-i-needed-it.html

Sensory Processing Disorder Answer Book: http://www.amazon.com/Sensory-Processing-Disorder-Answer-Book/dp/1402211236/

Health Products for You: Posey Bed Canopy System: http://www.healthproductsforyou.com/catalog/products/4286/Posey-Bed-Canopy-System/

Causecast: Autism Health Twitter day Tuesday December 23rd ALL DAY Obama wants to know: http://www.causecast.org/member/tanners-dad/videos/4994-autism-health-twitter-day-tuesday-december-23rd-all-day-obama-wants-to-know

Easter Seals: Guide to Living with Autism [PDF]: http://www.easterseals.com/site/DocServer/Study_FINAL_Harris_12.4.08_Compressed.pdf?docID=83143

Act for Autism: http://actforautism.org/

Helen DeVos Children's Hospital: http://www.devoschildrens.org/?start

BellaOnline: Autism Spectrum Disorders Site: Purposeful Communication Techniques: http://www.bellaonline.com/articles/art59220.asp

Voice of America: Temple Grandin Turned Disability Into Asset for Animals: http://www.voanews.com/english/AmericanLife/2008-12-22-voa35.cfm

Temple Grandin: http://www.templegrandin.com/

Autism Speaks: Support Groups: Michigan: http://www.autismspeaks.org/community/fsdb/category.php?sid=27&cid=76

Wrong Planet: Could autistics become the majority in the distant future?: http://www.wrongplanet.net/postt86414.html

Wrong Planet: http://www.wrongplanet.net/

BellaOnline: Autism Spectrum Disorders Site: Book Review on puberty and hygiene for young people with autism: http://www.bellaonline.com/articles/art34042.asp

US Department of Education: Office of Civil Rights: http://ed.gov/ocr/ OR http://www.ed.gov/about/offices/list/ocr/index.html

Autism Risk & Safety Management: http://www.autismriskmanagement.com/

American Speech-Language-Hearing Association: Typical Speech and Language Development: http://www.asha.org/public/speech/development/

Autism Speaks: Interagency Autism Coordinating Committee (IACC) nears completion of Strategic Plan for Autism Research: http://www.autismspeaks.org/inthenews/dec_12_2008_iacc_meeting_recap.php

CauseCast: Tanner's Dad: http://www.causecast.org/member/tanners-dad

Final Thoughts

Twitter: Tweet: Autism & Healthcare Twitter Day


Posted by pfa at 11:22 AM | Comments (0)