Texting That Can Save Lives (Monday afternoon plenary liveblog, YTH live 2014)

*Nancy Lublin: Texting that Can Save Lives*

Monday April 7th Plenary: 1:30-2:15pm

Mapping Big Data, Infographics and other Good Stuff*
Data, data, data. How do we cut through the clutter? With visuals, of course. Whether using geolocation data to map trends and epidemics, or using research data in infographics to advocate for policy change, visuals can help your audience understand, absorb and act.

Nancy Lublin – CEO of Do Something, founder of Crisis Text Line

Our campaigns are something that teens can do without access to a car or telling their parents. We work on teen pregnancy and we found that most campaigns focus on long term impacts, which teens aren’t as likely to think about. She thinks her love will beat the odds – but if you tell her she won’t fit her prom dress tomorrow, that will affect her!

We impregnated the boyfriend’s cellphones – so if you text baby to 38383 you will get super annoying text messages tomorrow starting at 6:30 AM from a virtual baby!  People started texting back which we did not expect – we get one message every 7 seconds – so we built in an AI to respond. We have 150,000 people involved. All the research says that talking about it is the silver bullet, and this campaign gets kids talking about it.  We have a viral hook – someone can babysit your text baby for 3 minutes.

Texting has a 97% open rate and there is not much spam, so text is incredibly effective. Texting skews Hispanic & urban – top 3 markets McCallen, San Antonio, Miami Beach & top 2 names are Juan & Maria.

The most interesting thing is that we get text messages that are clearly crises and clearly “out of flow” – “I’m being bullied and I don’t want to go to school.”  And then we got the message that changed everything – “He won’t stop raping me, it’s my dad, he told me not to tell anyone, are you there?” We sent her the number for RAINN, who we love, but we never heard back from her – and at that point we realized there was a need for a crisis text line in America.  I spent two years raising money.

And now . . . We only launched very softly – 4000 single text messages to youth already on our list – and we only launched in August, and we’re serving that many people – there is a real need for us.  We’ve passed 1.5M messages and are handling 11K messages a day.  These young people are crying in the bathrooms and texting us. Our goal is to respond within 14 minutes – we are responding within 4 minutes. And they tell us everything – instead of crying and a lot of emotion there’s facts coming through. There’s a thread in our system so we can immediately jump back in if you text us about the same problem a week later.  The system is built for the counselors – they can talk to another counselor in the system and decide how to respond to the kid together. A counselor can watch up to 4 threads on the screen so it’s economical.

The best part is getting rolled out in June and that’s the data.  We are autotagging all the words in real time and in June we will have the largest map of crises in America – geographic locations by distance, time, and theme of crisis.  You’ll be able to see amazing things – like eating disorders texts come in Sunday night, Monday, and Tuesday morning. Just think what that information does for the intake center to staff up, families, school lunch creators.  Cutting – we have equal numbers of text messages in school day as well as at night – meaning that cutting is an in-school problem.  Police will be able to see when crystal meth hits a neighborhood. This data will be available for free under a Creative Commons license.

But what I want to announce today – we want to make the technology available to all of you.  In order for data to be pure it depends on volume, velocity, and variety – and it’s very important for us not to fragment.  That’s why we have one 911 – and why we want to have one crisis text line, 741741.  And I’m here today to gift it to you. We would like to be your service provider – we’ll give you your own keyword if you want and your counselors can own that.  The data is shared and goes through the same system, but you’re handling your own counseling.  You can only work during your open hours, you can fundraise through local foundations, you can get only messages from a local area. It’s hard doing what I do – the technology, the data, and the marketing – and it’s hard doing what you do – you don’ t want me counseling eating disorders, I think marshmallows are a food group!  Let’s do it together. Let us do the technology.

June Sugiyama, Vodafone Americas:

What do you think this image is? It looks like an aquarium, a piece of art – but it’s a world snapshot of countries sized by HIV prevalence.

Lynwood Bishop, MapLarge, Inc. – Platform for Big Data Analytics, Visualization, and Publishing

We take data that all of you are creating in these super fantastic programs and we help you get your message out there. We turn data into products – for example, we have large amounts of cell phone data. Our customers range all the way up to CNN – we made some infographics for them.

Today we’ll focus on how to spread your message using data – grow your audience, grow your stakeholders, grow the people who are using your data.  How do you capture that PR, that press person, that blog writer with something very tangible they can write about? How are you going to shape your story so there’s a hook? How will you increase your reach?

One of our projects is called AIDSvu – the old way to map this public health data was these large, static state maps that weren’t that usable. AIDSvu changed that – we started mapping at the county level, and we added a new kind of data to create a new conversation every year.  So, we included social determinants of health – like % of population with high school education – does this correlate with HIV prevalence?  What external data can help you leverage your data set? The neat thing about AIDSvu is that people are able to bring their own lenses to it.

I believe that exposing data to others and creating stories really helps empower them. Remember what’s newsworthy: what’s timely in your data, what’s captivating, and what’s new. That gets your message out there about what you have to offer.

Tom Coggia, IconAtomic

I’m on the visual design side of this – I’m not a data collector. And what I’m really excited about is Quantified Self. In a nutshell, quantified self is all about you. What I find interesting is this shift from really large data sets about many people to personal data – the shift from the population to the personal in health. Devices – trackers, Jawbones, phones, Fitbit – these allow us to track details about our health.  A scale that measures weight and heartrate over time.  A scale and app that allows us to measure all kinds of data about our food & what we’re eating – I’m eating this apple. Apps that pop up and ask what we’re doing, where we’re going. Taking pictures of yourself every day and finding out differences over time. Send 23andme some spit and they’ll tell you about your ancestry.

But now that we have all this data, how do we actually make it useful? How do we move from visualization to actualization? 23andme got into a little bit of trouble because they were giving medical advice and the FDA hadn’t approved that. But – if you graph weight vs blood pressure data, people can really see changes without any medical advice – they can correlate the differences.

Sex Pro – we asked questions about demographics and about sex/drug/risk behaviors – then we presented the averages for their community versus their risk score.  And we let them change the sliders and see what risk factors were really affecting them.

Michelle Hamilton-Page, Center for Addiction and Mental Health

The core question of this project is – if I asked you to visualize health and wellness for you – what would that look like? How would you map that? What would that taxonomy look like? We have youth constructing these maps – we want to see where they are going and what they are doing. Maybe they’re going to the clinic, maybe they’re taking a walk? The CrowdMap platform can scrape social media so we can actually record experiences – we can get negative stories about how people are treated at clinics.   We’re only three months into this. The biggest challenge is how do we take this participatory mapping and transform it into something where we give feedback to organizations? So they can really hear, you know, your service sucks for transsexual students. So they can really improve.

Wil Yu, Foundation for Healthcare Innovation

Lumiata – ensuring the best of medical data is actually used at the patient level, making it available and quickly usable at the point of care.  All the information in a hospital system can create a per-patient JSON object and Lumiata can use that to generate a per-patient story and we can bring aggregate data and outside world data into that.

How are you going to tell a compelling story? All the panelists here today are engaged on a journey to help liberate the story.

Google, Facebook, and other web tools developed graph analytics to visualize data and disrupt search and social networking – and we can apply those tools to healthcare now. It’s a game-changer.

If you are on that journey, if you are trying to initiate change, I urge you to look at your data through three different lenses:

  • Science – the data has to be grounded in scientific research and what we know.
  • Data Science – what relationships exist in your data? what is available when you put it onto a screen? correlation is not causation.
  • Cultural lens – A lot of folks develop wonderful health technologies, wonderful apps and tools – but then they’re unaware of the cultural impacts & viability of their ideas and so they won’t work.

Find that compelling hook and line it up with your desired audience. My organization sponsors a yearly challenge called the Beauty of Health Data – it’s free to enter, please do.

Jacob Solomon, Code for America – @lippytak

So, we visualized food stamp data nationwide – and we discovered that the worst for utilization was California. And then we took a trip to an agency – and the workers were behind bulletproof glass, and there was a metal detector, and there was a barbed wire fence, and a long wait for a 5 minute interview.  And data couldn’t tell us that.  We enrolled ourselves which is an experience we never could have had with data.  I put together a user experience walkthrough of applying for CalFresh online – there’s like 120 screens. “Have you or any member of your household been found guilty of trading food stamps for guns?” Our case was terminated 3 times during the 7 months for many different reasons.

In the process of talking to clients we found a ton of barriers – and we decided just to do one simple thing – to send cell phone text messages to people whose benefits might stop.  And this was SO difficult to do – we had to work with government agencies, we had to collect cell phone numbers. To our knowledge we were the first human services agency to send text messages.

And – visualizations are cool but they’re often very abstract.  Collecting data on the experience of humans in these systems – I think that’s the data that really brings it home and makes it personal and helps us understand how to enact actual change.

Closing discussion:

It’s about the crowdsourcing piece. – Michelle Hamilton Page

It’s about making the data relevant to people’s lives. – Wil Yu

You only have one opportunity to get the data – so make it the nicest experience possible and collect the most data that you can. – Tom Coggia