On March 11, the White House hosted an event to mark National Women and Girls HIV/AIDS Awareness Day. The event was livestreamed from whitehouse.gov and is archived on YouTube:
I have written before about the unique nature of conferences concerning sexually-transmitted infections, but I didn’t expect to hear the same frank talk at a White House event. But why not? Why should a health professional be shy about asking the audience, as Gina Brown did, “When a woman stands up, which way does her vagina point?” The answer may surprise you and if you turn the volume up on your speakers you can hear someone in the audience say, “Oh!” Later in her talk, Dr. Brown urged the audience to Google “female condom” so they can better understand the challenges people face in trying to use it. Yes, a clinician from the National Institutes of Health urged people to Google something because she thought it would be the quickest path to understanding it.
My part of the program focused on how health information has gone social and mobile. I talked about how many people turn to peer-to-peer healthcare and how organizations can’t control the conversation about HIV, but they can contribute to it by making their information easy to share.
As I listened to each speaker I thought: What would happen if all the knowledge and insights being shared here could be shared across all the social networks that women and girls have access to? What if women and girls could use their cell phones to share this information among themselves, since not everyone is ready to have the word “vagina” pop up on their Facebook profile? What if boys and men could gain access to this knowledge, too?
I urge you to listen to the whole event, but if you don’t have time I’ve provided a cheat sheet so you can skip ahead to certain segments. Of particular note: every panel featured at least one woman living with HIV, bringing an e-patient perspective to the discussion. And be sure to catch a few of the Q&A segments because the audience questions were as interesting as the panelists’ remarks.
Opening remarks (go to 0:01:40)
Jeffrey S. Crowley (Office of National AIDS Policy)
What Can YOU Do: Take Action (go to 0:08:00)
Congresswoman Donna Christensen (U.S. Virgin Islands)
Framing the Discussion: Epidemiological Overview (go to 0:22:30)
Gina Brown (Office of AIDS Research, NIH)
Panel 1 Discussion: Taking Action Against HIV/AIDS: Effective Strategies for Prevention (go to 0:44:00)
Moderator: Janet Cleveland (Division of HIV/AIDS Prevention, CDC)
Panelists: A. Toni Young (Community Education Group)
Cristina Pena (Elizabeth Glaser Pediatric AIDS Foundation)
Barbara Joseph (Positive Efforts, Inc.)
Panel 2 Discussion: Getting the Help You Need: Access to Care (go to 1:18:00)
Moderator: Frances Ashe-Goins (Office of Women’s Health, HHS)
Panelists: Mardge Cohen (Rush University)
Heather Hauck (Maryland Department of Health and Mental Hygiene)
Hadiyah Charles (Suffolk University)
Panel 3 Discussion: What Can YOU Do – Take Action?: Social Marketing and Messaging Techniques (go to 1:45:00)
Moderator: Mark Ishaug (AIDS United)
Panelists: Regan Hofmann (POZ Magazine)
Susannah Fox (Pew Research Center)
Cheryl Smith (AIDS Institute, New York State Department of Health)
Closing Remarks (go to 2:25:00)
Tina Tchen (Office of the First Lady)
Cristina Pena, one of the other speakers, also wrote about this event:
Here’s an excerpt:
We need to provide our young women and teenagers with the education, confidence, and communication skills to help define and guide their own sexual experiences and health.
For women of all ages, this is our time to remind the country how important our issues are, and the specific challenges we face when infected, affected, or at risk for HIV/AIDS.
Talk to the women around you about these issues – not just on National Women and Girls HIV/AIDS Awareness Day and the month during which it’s commemorated – but on every day of the year.
One particular highlight will be added to my repertoire of talking points: “Yes, a clinician from the National Institutes of Health urged people to Google something because she thought it would be the quickest path to understanding it.”
That’s such a sign of changing times that it almost calls for an update to the e-patient white paper.:–)
This reminds me of the NIH consensus conference on VBAC last year, where women-driven social media played a central role in the meeting itself and then the disseminating of its clinical and policy recommendations. And it happened in such a revolutionary way, it was quite fascinating and made me incredibly optimistic. (this post discusses it: http://www.scienceandsensibility.org/?p=1141)
It also reminds me of a conversation I just had at Health 2.0 with Lygeia Ricciardi (@Lygeia) and Jill Arnold (@unnecesarean) when we were talking about Jill’s blog being blocked on Lygeia’s federal government computer. I’ve also experienced having Jill’s blog blocked from a hospital computer. In both cases, I suspect it is because it gets filtered as porn. Which seems a huge barrier to women and girls (and health care providers!) having access to the crucial information on sites that dare to utter the word “vagina” (not to mention words like “rape,” “abortion,” “emergency contraception,” and so on.)
Amy (and perhaps smart-geek Joe McCarthy), the issue of women’s health sites being (probably) porn-filtered HAS to be solvable – somewhere somebody manages the lists of robot-generated “must be porn” sites, and there MUST be a way to petition them. How can we find out who that is, and get that fixed?
Web geeks, help?
I don’t have any specific recommendations about how to do smarter filtering, but I did just read an article at Giga-Om about How Google Uses Data to Make Google Better, in which Alfred Spector, VP of Research & Special Initiatives spoke of Google’s work toward hybrid intelligence (algorithms + human/social dimensions) that might lead to, among other things, “a spam-killing blog moderator [that] could be created by end users if they train the system with both good blog posts and spam comments.” I imagine this same kind of approach might be applicable to smarter filtering of web sites.
That said, I’m generally not in favor of filtering software, and suspect a more effective approach would be to eliminate the filtering on federal government computers … or, at the very least, those used by adults.
I wonder if it’s less of a technical filtering problem and more of an adoption problem. What is the motivation for systems that use filtering to finely tune vagina-related content to differentiate porn from empowering, informative material, especially in our culture where we fear girls and women being empowered about their sexuality? I’m with Joe that federal computers and for that matter hospital computers perhaps shouldn’t use filters at all.
Understood. But regardless of how one feels about such a Federal policy, it would benefit those who do live inside filters if the master filter lists did wise up.
It’s grossly puritanical, and keeps people uninformed, to mandate that repeated mention of the privates is … unmentionable. Doing that really oughta be banned: it’s a kind of protective filtering that can ignorantly cause harm.
Amy, I was thinking of you as I wrote this post so double thanks for your comment!
I was also thinking of Eve Ensler, creator of the Vagina Monologues, another pioneer of frank talk and understandinista (yep, I just made that up – a revolutionary of understanding): http://www.ted.com/speakers/eve_ensler.html
All, if you haven’t read Amy’s post (linked above), I highly recommend it.
Thanks for the cheat sheet – I rarely take time to watch videos (even the ones I think are interesting), so I always find it helpful to have a text summary I can easily skim.
Given that I have not watched the video, I’ll simply note that when I saw you tweet the title of this post, my immediate reaction was that information is a virus.
The definition of virus on Wikipedia, “a small infectious agent that can replicate only inside the living cells of organisms”, brings to mind the philosophical koan, “If a tree falls in a forest and no one is around to hear it, does it make a sound?”
I’m also reminded of the data / information / knowledge / wisdom hierarchy, and wonder if data does not infect at least one person, or is not replicated in others, is it information?
Bringing it back around somewhat closer to your intended trajectory, I suppose the question becomes how we can help cultivate and propagate good information viruses in a world where bad information / misinformation also replicates with such alarming viral speed … which I think has at least as much to do with promoting critical thinking as it does with technology.
Joe, isn’t this “information as virus” what the whole concept of meme is about?
I get your point about “if it’s never received, is it information?” I’d assert that it is information; otherwise, later when it is read, would it become information then? (i.e. would the information suddenly come into being)
And that’s getting all Schroedingery on me…