Friday, March 28, 2014

New Ideas at TED2014

I just returned from a spectacular week at this year’s TED conference in Vancouver, Canada. TED gives me the chance to brainstorm with loads of people who gather to discuss ways to change the world through technology and design. Beyond debating the stimulating topics of major talks—such as Edward Snowden’s appearance by telepresence robot and the response to it by Rick Ledgett, the Deputy Director of the NSA—I spent much of my time speaking about my favorite topic: technology for social good. Of course, that included getting new ideas for software for social good!

Idea One: Tackle Indoor Pollution 

First, I sat down with the controversial Bjorn Lomberg, also known as the “Skeptical Environmentalist.” Bjorn has gotten a lot of attention for his recommendations to combat climate change by focusing on improved humanitarian efforts. As an economist, he stresses the need to quantify the impact of humanitarian interventions: for instance, whether a certain effort will bring $59 of benefit for every dollar in, or only $4. I asked him what his top priorities were, and he chose two:
  • Improving indoor air pollution. Old-fashioned cooking methods kill millions each year. Cooking a meal shouldn’t be fatal: clean-burning stoves, as well as clean fuels and energy all help combat this problem. 
  • Improving childhood nutrition. The lifelong impact of significant malnutrition on a child can be devastating. 
Since I’m a software guy, I asked about what software could do to help with these two real-world problems. Bjorn was a bit reluctant, but agreed on the proviso that we were just “spitballing,” brainstorming ideas without expectations that they would be thought through. He quickly came up with the idea of a mobile app that could show a woman the years of life expectancy she (or her family) will lose due to breathing the polluted air inside her dwelling. We kicked around ideas for sensing the air pollution: could you take a picture of a white piece of paper indoors and outdoors? Could you add an attachment to the phone that could sense the pollution?

Will such an app work? If it worked, would it lead to behavior change that would save lives? We didn’t know, but it wouldn’t be that difficult to try out. Moreover, if you could accelerate shifts away from unsafe cooking practices, you might have a terrific return on social investment. Worth some thought: I’ll stick that idea into the Benetech Labs hopper!

Idea Two: Disrupting the Prevention of Blindness in Rural Communities 

Andrew Bastawrous is an ophthalmologist and TED Fellow. His innovation is the PEEK software tool: a low-cost smartphone ophthalmic system that delivers comprehensive eye examinations in the developing world, to those who need it most. He now lives in rural Kenya working on eye care. We, of course, ended up talking about helping people who are blind around the world. Andrew’s focus is on curing blindness: 80% of the people he sees in rural Kenya can have their blindness reversed. Getting a cataract operation has a miraculous impact on recovering sight. Andrew, however, is also concerned about the 20% of the blind he can’t help. What can we do for them?

As someone who has been writing software for blind people for 25 years, we were in my element! I explained Benetech’s efforts to grow the impact of our Bookshare library globally, specifically discussing partnerships with groups in India and Kenya. Our near-term approach is to reach the more urban, wealthier portion of the blind in these countries, with the expectation of extending our services to the blind in disadvantaged, rural communities someday in the future.

Andrew challenged me on that idea. The rural blind are truly among the poorest of the poor in the world. If Andrew and his peers can’t cure their blindness, could we help them with access to information? Of course, we’d have to focus on local language content. While English might be very useful in Nairobi, Swahili would be the language needed in rural Kenya. Andrew’s challenge wasn’t an empty one: his team could measure the effectiveness of interventions we might try and see how well they work. If we found something that really worked, it would likely be applicable to millions of blind people in the developing world.

I’m always excited when someone challenges me to be more ambitious about positive social change. It was unusual to get that challenge on territory I find so familiar, like helping blind people. Well worth a try!

Idea Three: Recovering Cognitive Function 

The final session of TED included an interview on stage with former Representative Gabby Giffords and her husband Mark Kelly, by Pat Mitchell. Gabby Giffords clearly struggles with communications: Mark Kelly forthrightly described her aphasia as knowing what she wants to say, but being unable to get the words out.

It made a big impression on me and many in the audience. We know in theory what a brain injury means, but seeing Gabby Giffords on stage, struggling to speak as a result of her brain injury, brought its impact home.

On the steps out of TED, I was chatting with one of the attendees about what to do to help Gabby and other people recovering from brain injuries, and of course my mind went to software to help recover cognitive function. Like the previous idea, this one was an expansion of something that is already percolating in Benetech Labs. Last month, a good friend of mine connected me to someone who was recovering from a stroke. This fellow had relearned to walk and talk, but was frustrated by the loss of a specific cognitive skill: the ability to listen to numbers (like a phone number) and transcribe them. We had emailed back and forth about software that would drill him on ever-lengthening strings of numbers. Such an application is completely doable with not that much work. It is, however, a very narrow tool even for a social enterprise, let alone for a profitable business opportunity.

Discussing Gabby Gifford’s challenges, it occurred to me that there might be a real opportunity for building a series of software products for helping people recovering from strokes or traumatic brain injuries. The human brain is an extremely complex organ, but it should be getting easier to tune up different exercises for different recovery needs. Maybe there is a social enterprise in here!

Idea Four: Fighting Corruption 

The TED Prize this year went to Charmian Gooch of Global Witness (she also won a Skoll Award for Social Entrepreneurship at the same time). Charmian wants to fight anonymous shell corporations, which are often used for corrupt and socially damaging purposes.

Normally, I listen with appreciation when TED prizes are announced and people in the community jump up to offer help. This time, I jumped up! We’ve been actively engaging in discussions about how to use our Martus software for whistle-blowing and confidential information gathering. Whether or not Charmian’s group ends up using Martus, this is definitely an area where we could be helpful. Since Charmian will get her Skoll Award at the Skoll World Forum in Oxford the second week of April, I know we’ll have the chance to kick around her needs. Looking forward to exploring this one and helping fight corruption with software.

Conclusion 

At Benetech Labs, we’re sharing our passion for innovation and for discovering new software social enterprises with the potential to deliver large-scale benefits to society. We’re delighted to join forces with entrepreneurs, social and business leaders in pushing the frontier of applying technology to empower people, improve lives, and create lasting social impact.

Wednesday, March 19, 2014

Snowden and Techies: First Do No Harm!

Snowden taught us that governments are vacuuming up every shred of communications they can. As techies, we need to first do no harm. As we collect sensitive information about health, ethnicity, LGBT identity, refugee status, experience of violence, we need to encrypt that information, to avoid making the people we serve, targets or victims by current or future governments!



TED2014 attendees were asked to reflect on their reactions to the Snowden appearance on stage. I delivered the exhortation above from the TED main stage tonight to my fellow technologists, about our responsibility to secure sensitive information. My comments were based on the recent HuffPo op-ed authored by Enrique Piracés and me, entitled Human Rights and the Duty to Protect Sensitive Data.



Our experience working with human rights defenders, especially LGBT and Tibetan groups, give us direct insights into these challenges.  As software developers entrusted with sensitive information, we have a duty to protect the people we serve.  And, this responsibility extends to far more software developers today than we thought.



Think about it.  Encrypt all personally identifiable information with strong, open source crypto, and take a big step on the road towards doing no harm while bringing the benefits of technology to the world's most vulnerable populations!

Thursday, March 13, 2014

Human Rights and the Duty to Protect Sensitive Data

Co-authored with Enrique Piracés, Benetech VP, Human Rights.

Consider this: when you visit your doctor about a medical issue in the United States, you can be reasonably confident that it won't shortly be on the front page of the local newspaper. Privacy protections that ensure your doctor treats your information securely were mandated under the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Yet, when humanitarian and social justice workers venture into the developing world to gather sensitive information, elementary privacy protections are often neglected.

Don't victims of human rights abuse, refugees, LGBT individuals, and survivors of gender-based violence deserve the same kind of respect for their sensitive information as you expect when you visit a clinic?

Unfortunately, there is no HIPAA equivalent for international human rights and humanitarian information. And this creates serious personal threats in an era where numerous organizations around the world collect individually identifiable data that regularly leaks into other hands.

Photo of Jim Fruchterman moderating a discussion
I moderated one of the discussion panels at the human rights conference
RightsCon Silicon Valley, March 3, 2014
Such confidential information can easily become compromised with the loss, theft, or confiscation of a smartphone or a computer. We now understand that corporate collection and government interception of sensitive information is the norm, not the exception. In the absence of standards that protect that information, the lives of suffering people—victims, witnesses, and the defenders who collect their stories—are all too often put in harm's way.

The summer of Snowden and revelations about the NSA have brought the public and private debate about digital privacy into the mainstream. But it is clear that privacy protections have not kept pace with technological development. In his January 17, 2014 speech on NSA reforms, President Obama stated: "As the nation that developed the Internet, the world expects us to ensure that the digital revolution works as a tool for individual empowerment, not government control."

At Benetech—a nonprofit technology company that develops innovative and effective applications for unmet social needs—we embrace the notion of individual empowerment every day in our work. We know that surveillance is a common strategy to monitor and repress the efforts of many social justice groups and often leads to harm for those who document and expose human rights abuses.

To make strong security accessible to the community involved in human rights documentation, we developed Martus—a free, open source, secure tool for collecting and managing sensitive information.

There's a lot at stake when it comes to protecting data during collection, especially when the information is about subjects who are or could be at risk. We believe that groups involved in collecting identifiable information that might endanger the lives of people who are or could become victims of human rights abuse have the responsibility to protect that information.

That's why Martus offers end-to-end encryption. This means that the user's data is encrypted locally on his/her computer and only the encrypted data is stored on the computer's hard drive or communicated over networks. The keys to unlock the encrypted data should be kept securely by the user, and not shared with third parties who can be hacked or forced to give up the keys to repressive governments.

Take for example a Lesbian, Gay, Bisexual and Transgender (LGBT) rights-focused organization with which we work. They are based in a country where the LGBT community faces a hostile social climate and state-sanctioned harassment. Their offices were raided and police confiscated their computers—including part of its membership list that was insecurely stored—and then used that information to harass members in their homes, in some cases outing them to their families and forcing some to go into hiding.

This is but one incident. Unfortunately, there are many other stories of abuse and violation.

For instance, we know that it is not only current defenders and activists who could be at risk. Collection and archival of digital information are expected tasks for most relief and research efforts, but rarely do such efforts consider the security and safety of data over time. This could be particularly harmful for people who have no other option but to provide data. Think of refugee acceptance at the border of any conflict zone: today's refugee could be tomorrow's targeted person based on ethnicity or political affiliation. Or think of sexual violence in an Internally Displaced Population camp. If you are identified as a rape survivor in many parts of the world, you are likely to experience extreme social stigma.

In the light of the state surveillance leaks and the increasing use of technology to extensively document vulnerable people, we strongly urge all organizations working in the fields of social justice, human rights, humanitarian aid, and journalism to commit to protecting this information with the same level of safeguards that citizens of wealthy countries expect for their own sensitive information. We all have a duty to avoid doing harm, and a duty to protect the most vulnerable communities.

This op-ed was originally published by the Huffington Post.   

Monday, March 10, 2014

Data and the Human Touch

Meet Kevin and “Sophia” (who anonymously shared her story with my team).

When Kevin was in kindergarten he had an organic brain injury, which forced him to have to relearn everything from walking to using the bathroom. There were several years where Kevin struggled in school because his vision was blurry and this made reading normal size print grueling. He could no longer keep up with his peers in the classroom.

One day when Sophia was in fifth grade, she suddenly went blind from an inexplicable disease. Sophia and her family were left confused and concerned about her future in the classroom. Braille books saved her from isolation and she became an insatiable reader. However, she soon encountered the frustrating “accessible book famine” because very few books available were available in Braille.

This reality changed when both Kevin and Sophia learned about the accessible online library Bookshare, an initiative of Silicon Valley technology nonprofit Benetech. With its rapidly growing collection of over 225,000 (and counting) accessible ebooks, Bookshare is the world’s largest library of its kind.

Photo of a boy seated outdoors, holding an iPad in his lap, looking at and touching the screen.
Sixth grader Kevin Leong reads a Bookshare book on his iPad
“This access to books,” Sophia wrote, “has given me [the] wonderful opportunity to flourish despite my disability. I can enlighten my mind, enliven my spirit, and experience what I couldn’t before. In this world, in which I am at an inherent disadvantage, I may now participate and, one day, perhaps contribute to its betterment.”

Every month, our staff receives letters from individuals whose lives have been touched by our work. These stories about the needs in our communities are data points of real, positive change. But do they measure the real impact we’re making in the lives of our beneficiaries? Can attribution hold up when it comes to measuring the human experience of hope, self-worth, or reconciliation?

Data is now a core resource. Tremendous shifts in data availability, access, and use are rapidly transforming our lives, and numbers debates are taking center stage in the development, philanthropy, impact investing, and social enterprise sectors. Like it or not, we live in what Kenneth Neil Cukier and Viktor Mayer-Schoenberger have coined the age of “datafication,” where many aspects of the world that have never been quantified before are being rendered into data. We’re witnessing how data-driven insights are becoming a prerequisite in decision-making and in the practical work of policy and social service organizations.

Stock graphic conveying the idea of a world globally connected through networks of data.
Image courtesy of the Skoll World Forum
This sea change has triggered a host of heated and controversial topics: from intellectual clashes between GiveWell and Charity Navigator over nonprofit efficacy, through theories of the kinds of information that define the nonprofit sector (medium data, opines Guidestar’s Jacob Harold), to explorations of the interplay between mission-driven and finance-driven data in both nonprofit and for-profit enterprises.

Here’s Benetech’s outlook: we advocate for a human-centered approach to data in the social sector. Data without context has little value. We ask the question: data for whom?  We’re a technology company and strongly believe in the power of information as a force for good. But we’re also a nonprofit with a social mission to empower individuals in complex and often difficult circumstances. Which is why we also argue that it’s dangerous to base decision-making and practical work concerning human growth and development purely on data-driven insights (we prefer semi-automation to automation).

Dominated by engineers and high tech executives, our senior leadership fully accepts the premise that in order to create systemic change we must build the capacity to collect, monitor, and interpret data over time. The data and its related systems, however, can take us only so far.

Our beneficiaries—such as front-line human rights defenders in repressive communities, students with disabilities, and environmental activists—live and operate in complex realities where certain data may be of little value and where measuring impact is messy. When it comes to helping our users, therefore, what matters to us first and foremost is empowering these individuals to prosper and advance their own goals, not so much optimizing for one metric or another that might not even truly measure our mission goals.

Being more adaptive and less rigid also creates the opportunity for serendipity. Consider this: what if your metrics turns out to be irrelevant because your beneficiary adapts your solution or service into something quite different from what you had intended it for?

A case in point comes from our human rights team, who works with a Lesbian, Gay, Bisexual and Transgender (LGBT) organization based in a country where the LGBT community faces a hostile social climate and state-sanctioned harassment. Trained to use Martus, Benetech’s secure software tool for human rights documentation to gather accounts of violations and abuses in the community, this group decided to encrypt and backup its members’ list instead. In this instance, evaluating Martus’ impact using standard indicators like the number of human rights accounts (“bulletins”) backed up to the Martus servers—one of our primary indicators of achievement towards measured success—is meaningless. It was more valuable for this organization to safeguard the names and addresses of its members.

Ultimately, applying a human-centered approach to data in the social sector means keeping focus on your mission and knowing your beneficiaries. Treat them more as customers, less as recipients of easily quantifiable social good units. Listen to their needs and adjust course accordingly. Years of working closely with our users have taught us that their circumstances and the goals they are trying to accomplish vary widely.

In the words of Kevin Starr of the Mulago Foundation, “to find the impact jackpot, you need to immerse yourself deeply enough in context and methods to make a reasoned judgment. You also have to be a little flexible: Real-world measurement often requires a certain amount of creativity.” Even in a world of big data, creativity and intuition still require the human touch.

This op-ed originally appeared on Reuters in partnership with the Skoll World Forum.