Monday, May 15, 2017

Talking with Teens about Sex: Can Awkward Be Cool?

Dfusion staffer sports ConDemo at YTH Live
The answer: It’s complicated. I recently spent May 7 - 9 in San Francisco, at YTH Live – an annual conference sponsored by Youth Tech Health ( that showcases innovative ways to engage youth in reproductive health matters via technology.

Public health advocates, global health experts, tech innovators and policy makers moved from room to room to discuss the question of how best to reach young people to share important information on contraception, HIV prevention, LGBT support and stigma reduction, dating abuse, suicide, and other sensitive topics.

This isn’t the sex ed you remember, but that’s probably a good thing. A TIME Parents article Why Schools Can’t Teach Sex Ed shared that nearly 80% of sexually active teens aged 15-17 had no formal sex ed before having sex the first time.  Not to say that what is communicated is any less awkward, or less sticky. Sixteen year-old Olivia Poretta, animator and producer of Wise on the Web, a short film about Internet safety said, “Kids really respond to a one-to-one connection, and sharing in a positive way, not scare-tactics.” She said she really started listening about HIV prevention when she heard a guest speaker at school talk intimately about how he lost his boyfriend to AIDS in the 90s. While not every teen may be as self-possessed and emotionally mature as Olivia appeared to be, there was a general consensus amongst the youth ambassadors at YTH Live that being talked to as a young adult, not as a child, was the way to get their attention.

Believe it or not, bringing sex ed to the Internet and mobile technology is not new. YTH stands for Youth Tech Health, and has actually been around since 2001, when sex ed trailblazer Deb Levine founded what was then called “Internet Sexuality Information Services, Inc.” During the 3-day conference, the current Executive Director of YTH, Bhupendra Sheoran, seemed to magically appear and add profound insight to every panel I attended. His ever-present smile and enthusiasm and cadre of young energetic employees make YTH feel more like a start-up than a health communications firm.

Interestingly enough, many of the most successful programs and campaigns presented at YTH Live came from global rather than domestic efforts, although as a global public health professional this is not news to me.  While the US lags behind in social behavior change communications (SBCC) and social marketing innovation in nearly every sector domestically, successful global programs and projects funded by organizations like USAID and the Bill and Melinda Gates Foundation seem to have influenced the US’s public health communications establishment for the better. A few potential reasons for the disparity in technical innovation: US telecommunications laws restrict the use of mobile technology to send public health messages to the public without consent, and HIPAA (Health Insurance Portability and Accountability Act) compliance is essential if there is an exchange of electronic protected health information (ePHI).

On the first day of YTH Live, we were invited to participate in a “Human-Centered Design Challenge,” sponsored by FHi360, with expert coaching from Human-centered design, or HCD, evolved from computer user interface design, but it’s based on the simple principle that in order to make shoes for someone, you need to take a walk with them, listen to them, and be ready to change your preconceived notions about what kind of shoes you’ll make. In social marketing and SBCC, it’s known as participatory research, development and evaluation. I have my own take on the process called Change 101, using much the same principles to produce behavior-centered programming and social change campaigns.

The Design Challenge was framed as: How might we use social media-based platforms to support interaction with and feedback from adolescents with respect to reproductive health and contraception?

No small feat to come up with a novel approach in 48 hours! We quickly learned  through our rushed, highly unscientific research gained from speaking with teens from our programs and random young souls roaming around the adjacent mall, that they had no interest in talking about contraception via social media. Sex yes, the awkward stuff, no. My two partners and I came up with an idea for a Whatsapp-based “Dear Savvy Sanna” and “Amore Amante,” an app powered by human expert and data-informed avatars who would provide advice via text and IVR (Interactive Voice Recognition).

Well, we didn’t make the finalists. The three teams who did were composed of energetic 20-somethings who worked all night to come up with snazzy ideas. (Sigh. I’m not bitter at all! ;-) ) The winning idea? A take-off on the “F*#k, Marry, or Kill” game for Snapchat. For those of you who haven’t heard of this game, it rates potential dates as worthy of one of these three verbs inflicted upon them. This version included contraceptive methods as choices, and personified the user as a “Diva” of one choice or another.    For me, this begs some questions: can human-centered design go too far? and what responsibility as sexual and reproductive health educators do we have to recognize when form competes with function, and may even cause harm to the user, or promote negative norms? I digress. I’ll save that for another blog post.

Here are some of the innovative ideas, people, platforms and projects that caught my eye at YTH Live. Some are so fresh they are still in Beta mode.

·      Adolescents360° (A360) – A partnership between PSI and IDEO, this initiative, still in the “inspiration” phase of IDEO’s HCD approach, it aims to use a “more powerful approach to addressing adolescent girls’ unmet contraceptive needs” by employing young people as research and design partners.

·      Amaze – “More Info. Less Weird.” Amaze is an online sex ed resource for tweens that focuses on short, animated videos on topics like personal safety, identity and expression, and pregnancy and reproduction. It’s a collaboration between Advocates for Youth, Answer (Rutgers U), and Youth Tech Health.

·      Ask Tia – A virtual “Dear Abby” whose tagline is: “Your personal, private, digital women's health assistant.” Their CEO/Co-Founder Carolyn Witte told me they had 200 Beta-users who use the app an average of 13 times a month. Like the name implies, she said, the avatar Tia was created to impart the qualities of a “cool aunt” and who also has the ability to answer questions about sex, remind you to take your birth control pill, or provide info on what to do when (oops!) the condom broke!  Although many of the answers are data sourced, “canned answers” from a bot, others are responded to personally by the health educator or another on Tia’s small staff. When I asked Witte how they might respond to a sticky question like: “I am pregnant and want to get an abortion, where can I go?” She responded, “That is a very good question, and that is the type of thing we are working on.”

·      ConDemo – Huge nylon faux condoms developed by Dfusion to teach proper condom use, and get around many states’ rules barring the use of actual condoms in the classroom. (Ya’ think?!)

·      Check Yourself Tool – A tablet interface being tested at Seattle Children’s Hospital that simultaneously identifies risky health behaviors and offers personalized feedback to adolescents. I viewed it as part of a “digital poster session” and it’s too new for public view, but developer and Berkeley Doctoral candidate Garret Zieve showed me the demo used in doctor’s offices. “A tablet can be turned to avoid parents’ eyes,” he pointed out, “as confidentiality and privacy is huge” to teens. Questions like: “How many drinks do you consume in a week?” compared users’ answers to the entire sample, so that kids could see a discrepancy between what was the actual norm and what they perceived it to be. (This kind of information is great from a health communicator’s standpoint, as it can be used to convey the message that the actual norm is more positive than perceived.)

·      IOTAS – Stands for “It’s Okay to Ask Someone,” and is Planned Parenthood of Western PA’s version “Dr. Ruth,” (showing my age there) but their take teaches youth to interpret and answer questions texted in confidentiality by their peers. The interface seems to be in transition at the moment, as I only found dead links on Squarespace and Tumblir. Potential partners are being sought to pilot the new and improved interface, and can email for more info. Not to be confused with (but probably you already are) the more national texting-based platform: “In Case You’re Curious” (ICYC).

·      Jennifer Ann’s Group – Led by Drew Crecente, a dedicated father whose daughter was murdered by a former boyfriend, this organization focuses on providing information about how to prevent dating abuse. Crecente led a teen competition for best digital game to address the issue most of which are available on his website. Blogger bias here—I was so impressed by this man’s dedication to addressing this very important issue. I hope he gets more funding to present and distribute the content more effectively.

·      Rise Up – An Oakland-based organization focusing on empowering girls and women through advocacy training to promote policy change. Yeabsiva Bogale is one of the many young leaders supported by their Youth Champions initiative and gave an impressive presentation on her pilot “Gamification in SHRH,” which will as the name implies, teach sex ed via mobile games to Ethiopian youth.

·      Tune Me – A sexual and reproductive health and rights web and mobile site developed by South Africa-based for African adolescents in Zambia, Malawi, Zimbabwe, Namibia, and Botswana. Tune Me expert blogger content drives anonymous and confidential user-generate conversation fit for both low- and high-end devices. Praekelt was named “One of the 10 most innovative companies in Africa” by FastCompany magazine in 2015.  

Wednesday, August 6, 2014

The Ebola Ethical Dilemma

Image Courtesy: European Commission DG ECHO 
Having had the U.S. Centers for Disease Control and Prevention (CDC), as well as the FDA as clients in past years as a communications consultant, I feel compelled to comment on the former’s recent decision to treat the two American medical professionals with a "top secret" drug cocktail which appears to have saved their lives from the Ebola virus.

According to this LA Times reporter Monte Morin,  the selective treatment of two Americans has raised “red flags” for medical experts, but not for the reasons you might think. His August 6th article claims that “these medical experts” (unanimously?) decided that because the drug has not been tested by the FDA through formal clinical trials, it may prove “more harm than good.”

“There's a fairly good chance that it could do more harm than good. The drug could kill you faster, or make you die more miserably,” says Arthur Caplan, a medical ethicist, on the experimental Ebola drug ZMapp.

Really?  More harm than good? I don’t think that’s what the families of Dr. Kent Brantly and Nancy Writebol, the two missionary workers who were treated, would be saying right about now. By most accounts, Brantly was in grave condition, telling his caregivers “I’m going to die,” through labored breath.  Within an hour of receiving the drug he had improved markedly, and was able to walk onto the airplane that took him to the US the next day.

Creative Commons
The FDA has to approve all drugs used on citizens in within the US borders in absence of the  “compassionate use” exemption.  So clearly these two-doses of the drug were flown directly to Africa to help US medical authorities get around their own clunky, bureaucratic approval mechanism. 

Luckily those naysaying experts are not the only experts on the case, as another LA Times reporter, Robin Dixon, points out her article, “WHO to discuss access to experimental Ebola drug amid criticism.” In fact, there are plenty of WHO medical ethicists and other experts who believe this is more of an ethical crisis than a practical one, including the Peter Piot, who co-discovered the Ebola virus in 1976 and is director of the London School of Hygiene and Tropical Medicine.

They argue that even though limited quantities of the drug are available, and they are very expensive to produce, that African governments should be allowed to make informed decisions about whether or not to use the drugs, particularly the healthcare workers who are at high risk for infection.

There may not be enough of the drug to treat the hundreds of Africans infected, but surely there is enough to treat the African nurses and doctors who have been on the frontlines since the beginning, and who are now slowly dying along with their patients. It is especially troubling to note that Patrick Sawyer, the African American doctor treating Ebola patients in Liberia who was infected in early-July and withered away for two weeks before passing, may have died because he was of the “wrong” skin color, as it was only later “discovered” that he was a US citizen.

If we don’t protect these health workers, regardless of their nationality, skin color, or social status, who will be there to treat the desperate, helpless people who have contracted the disease?