Part 1: “If You Don’t Go, You Don’t Know”

If You Don’t Go, You Don’t Know
What We’ve Learned and What We’re Doing About It

PART 1: The Realization

Our TED Prize Beginnings 
InSTEDD was created from a TED prize with a single vision. In his acceptance speech, Larry Brilliant said:

“My TED wish is for you to help build a global system,an early-warning system, to protect us against humanity’s worst nightmares. So instead of a hidden pandemic of bird flu, we find it and immediately contain it. Instead of industrial accidents like oil spills or the catastrophe in Bhopal, we find them, and we respond to them. Instead of famine, hidden until it is too late, we detect it, and we respond. And instead of a system, which is owned by a government and hidden in the bowels of government, let’s build an early detection system that’s freely available to anyone in the world in their own language.“ (full talk here)

The “early warning/early response” mantra that Dr. Brilliant repeated throughout his speech was the core idea that InSTEDD was built upon. In order to really save lives and keep people healthy, we needed to act as a global community to advance our thinking on how to create a system that taps into both the importance of local knowledge and the power of technology.

The founder build an experienced, world-class team to move InSTEDD forward. The world of bio surveillance and disease detection was no mystery to this team. Whether it was simple data reports or complex phylogenetic analysis, InSTEDD’s experts knew how it all fit together. Yet there was still a huge missing piece that had to be found.

Water Water Everywhere, But Not a Drop to Drink
There were already many early warning systems out there, but the warnings still weren’t coming early enough. There were many analyst groups with powerful tools and lots of information, yet they seemed to be cut off from what was being experienced across the globe in the communities that were suffering. There was something more that needed to happen, and it wasn’t about adding more dots on maps.

Experience had taught us an important lesson — if you don’t go, you don’t know. While going to the source is important, individual knowledge is not enough. Everyone at InSTEDD had extensive careers and had developed domain expertise as they worked around the world, but what was really needed was to look at things from a unified, not just domain specific, perspective. The world had to be experienced through social and technical lenses simultaneously. There were plenty of data reporting technologies that people didn’t use — and didn’t want to use. Why? There were plenty of lives to save if the right people shared what they knew, at the right time, and acted together. What was getting in the way? That was the first problem we needed to explore.

A New Approach to Technology
While we were striving to understand the behavior patterns and real motivations of people living in vulnerable communities, a wide variety of seemingly helpful technologies continued to pop up all around us. At first, many of these new technologies seemed to avoid the obstacles we were observing in the field, yet after time all of them ended up in failure. Why did this keep happening? Was the big issue putting forms on phones? Maybe, yet, not really. Was the final solution recording information on to a map for the connected world to see? Well, not quite, the communities we worked in kept telling us again and again. There was something subtle yet critical just under the surface. Early warning and response, and its outcome — healthier people– would never be possible without a cross disciplinary course of action.

Our diversified global team was not just spending time in the communities we were hoping to serve, but were born out of them. It was the local experience that taught us a clear lesson again and again. Technology could serve people and their health, but something had to be changed about the way it was being developed. We knew that a new approach was necessary. And that was exactly what we set out to create.

Making Information Actionable
A wise man once said “teaching is reminding people of what they already know”, and that message instantly resonated with us. The challenge was to identify what people already knew and use the power of technology to bring that information together to make it tangible, operational, workable and most importantly, actionable.

Focusing on this would be a departure from the “early warning, early response” founding idea, but we were willing to expand our vision to strive towards creating a precedent for using technologies to best serve our global community. The challenge seemed huge, but we knew this was the value that InSTEDD needed to strive for.

Change is never easy, and our change in course was no exception. One of the most critical issues was the complexity of working as a non-profit and being dependent on the traditional structure of grants. Few grant makers are thrilled when their grant recipients don’t do exactly what was assumed up front. Fortunately for us, we had allies at Google.org, the Rockefeller Foundation and more who with an appropriate balance of skepticism and optimism gave us free reign to act on our intuitions and observations. That gave us both the motivation and flexibility to reach out to the most remote places where people had never even heard the word “Google” or “TED”. let alone know how to use the technologies we take for granted in the developed world. We knew had it in us to deliver results, but this was a tall order. There was nothing else to do but hit the ground running.

The Importance of Personal Design in the Mobile Technology Revolution
Mobile technologies present an unprecedented opportunity to improve health, safety and development. We are living in a world where nearly everyone alive has access to a mobile phone. In fact, more people in the world have access to cell phones than they do toothbrushes. Within this context, the global communication possibilities are endless.

While access to personal technologies such as the mobile phone is moving in the right direction, we must not forget how important the design aspect is in making these tools valuable and supportive of a healthier world. Personal technology requires personalized design; and no mobile health solution we had come across was approaching design from this angle, especially in the developing world. We found the skeletons of multiple tools in old PCs around rural clinics. Even more disturbingly, we saw example after example of tools used only under perverse incentive schemes, including paying individuals each time they used the system. These Frankensteins on life support were the best experience many of the people we talked to had with technology, which explained why we kept being turned away. We heard things like “You mean you can have something up and running in weeks? Impossible!” or “There is no way our rural users will send these reports. The last project paid every user fifty cents every time they send something, so they sent gibberish daily. If you want better information, you need to pay them better!” We talked to the people who would be using the tools to find out what would incentivize them to report data. We found out who was the data for and how would it help them? We learned how information was flowing so we could know when these rural health workers would find out if a neighboring village was getting sick. We knew progress could be made only if we put these people at the center of our world, and started creating technology with them, not just for them.

We knew we were fighting an uphill battle. We also knew that if we could engage people with incentives more meaningful than just money, then the impact of this work would be huge. So we stayed the course.

Continue on to Part 2 here.

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