#24 The Technology of Caring

Billions have no access to quality healthcare. One physician approached the challenge with love and kindness first, sparking an open-source technology, empowering millions.

#24 The Technology of Caring

The answer came to Dr. Sanjeev Arora all at once, in a meditation. For years, he had been witnessing patients suffering from Hepatitis C, an infectious disease that targets the liver, come to his clinic in Albuquerque, New Mexico – too late for treatment. 28,000 people suffered from hepatitis C in New Mexico, and only 1,500 received the customized treatment it required. He heard the same story all over, that local doctors didn't have the expertise required to treat the disease. Patients simply couldn't travel for hours to his clinic in Albuquerque.

For a while, he had unsuccessfully attempted to get hepatitis C treatment to people in remote areas by sharing his treatment protocols with doctors in rural areas. Something different was needed. In his daily meditation, he kept coming back to the question of how he could make a difference. That's how, one day, the whole answer came to him, an answer that would help him and thousands of others make a real difference. The answer became known as Project ECHO, an open-source community using online video conferencing to share expert knowledge and skills. It started in 2003 in New Mexico, when primary care providers met in video conferences to learn how to treat hepatitis C, by working through individual cases with experts like Sanjeev.

source: Project ECHO, University of New Mexico

I first met Sanjeev in 2012, nine years after he started Project ECHO. At the time, Project ECHO was considered a big success, reaching more than five thousand learners in eight countries. By 2021, that number had grown to seven hundred thousand learners in 191 countries, bringing complex skills, like hepatitis C treatments, to more than ten thousand cities. This is how expert knowledge for treating the rare Prader-Willi Syndrome is accessible even in remote parts of Romania, where Dorica Dan started her pioneering journey (see Story #20). The Project ECHO model has turned out to be useful in civics and education, too. The Albuquerque Police Department uses the model to train officers on crisis intervention, in prisons it offers valuable mentoring programs. Teachers of young children use ECHO to access mental health and teaching resources.

Not a Technology, But a Network of Care

In our conversation in 2021, Sanjeev tells me that too many people mistake ECHO for a technology. And it is true, ECHO is an impressive open-source platform using ever more sophisticated technologies like Artificial Intelligence to assist learning. To Sanjeev, the technology is secondary. The real star at ECHO are the values that underpin its mission, what motivates people to join. It is, essentially, a giving network, powered by human relationships.

First, I train you. Then you train others. That basically sums up how ECHO works. How you do that, matters a lot to Sanjeev. He realized early on that many non-profits failed to succeed in bringing about really large-scale change because they stopped focusing on their mission to change things, and instead focused on sustaining themselves. They essentially began to serve two masters: their mission for change, and their own organizational needs.

Disruptively Open

To avoid this, Sanjeev developed a set of principles to guide his decisions. The first was about intellectual property. Many non-profit medical institutions and universities guard the knowledge they create, and then sell it to generate income. Project ECHO would insist that all knowledge and technology is open, shared freely the day it was created. This also applied to the recognition Sanjeev himself received for his pioneering work: he gave all awards and fellowships to ECHO. His personal income, he insists, is strictly from his regular position at the university. He felt that if he didn't lead by example, financial incentives would gradually undermine the openness of the ECHO network.

"I was obsitant at times. Once I know something is right, it is hard for me to change my position. And I was struck by the feedback from learners, that this is amazing." - Dr. Sanjeev Arora, Founder of Project ECHO

The U.S. federal government alone has invested more than a billion dollars into projects related to ECHO. With all its success, large funds offered to buy out ECHO, others wanted to partner to offer corporate training services. At one point, a Harvard Business School professor tried to mentor Sanjeev, to develop a sustainable business model. No one seemed to be able to get their head ECHO's principle of never charging. In Sanjeev's mind, the minute you charge, you inevitably take care away from the poorest. That would undermine his personal mission, to help six billion people. He is afraid of how the triangle of monetization, sustainability, and personal wealth can undermine our missions.

Project ECHO has a very forward position when it comes to money. It doesn't charge any fees for accessing the model. The rule is simply, that if you want to help people, you can use ECHO. Fifty-five thousand partners do just that, and they have no obligations to share their grants with ECHO. Technically speaking, they are often competitors for grant funding. This dynamic, no strings-attached model has led to ECHO's rapid growth, and attracted scientific interest in its own right. More than three hundred research papers have studied the ECHO model, independently demonstrating its effectiveness. This made partnering with ECHO a popular way to raise grant funding, incentivizing more medical institutions to join ECHO and open up their knowledge. As a result, a university hospital may come to ECHO because it gives them an edge on a federal grant, or because they want to improve local health outcomes, like the uptick in demand for managing the opioid crisis in America.

Tech to Hold the Flywheel of Openness

This rapid growth began to put a strain on ECHOs very simple model. In essence, all it did was use Zoom conference calls to organize the communities of practice. People loved learning, and contributing in this way, but it began to become unmanageable. Sanjeev felt that he was at a crossroads. Either their growth would stagnate, following their past model. Or go into uncharted territory, and sacrifice certainty to move forward. In 2019, encouraged by the opportunity of technology, Sanjeev and the team at ECHO set a new goal: to reach a billion people by 2025. Despite their success so far, they wanted to make a difference on the big picture, where a child diagnosed with cancer in Africa has just five years of life expectancy, compared with twenty in America.

They shared an understanding that ECHO was a societal platform, a human network first, not a software. In their thinking, it is the human network makes the technology more effective, not the other way around.

Key to achieving this goal is ECHO Digital, an upgrade to the open-source technology. Sanjeev was inspired to embark on this journey by conversations with Nandan Nilekani, one of India's most successful technology entrepreneurs, and a committed philanthropist. They shared an understanding that ECHO was a societal platform, a human network first, not a software. In their thinking, it is the human network makes the technology more effective, not the other way around. It is a bet to further lowering the barriers to entry into the ECHO movement, and amplify the impact of what is already going on. Sanjeev is confident that almost twenty years after launching Project ECHO, the community has built the confidence and relationships to let technology play a more significant role without undermining their human relationships and values. Participants will have a better user experience, and knowledge will be captured more effectively, which in turn will make ECHO better for everyone. And more affordable, further reducing the cost and effort of participating.

A Technology of Love, and Kindness

"I focused 100% on values", Sanjeev says in our conversation. He keeps returning to what connects everyone, and everything, in what Project ECHO does. Searching for his calling in life, he meditated on the primary purpose of life: love and kindness. These values are inextricable from Project ECHO and the global infrastructure it now provides to millions. Like Serlo (see Stories 22 & 23), ECHO builds on the traditions of open-source movements, ensuring not just that infrastructures are open, but how personal and organizational financial needs can misguide a mission for change. Technology was always central to ECHO, starting with the first video conferencing apps. But it is never more than a tool to bridge distance. Or as he likes to say, to move knowledge, not people.

To me, ECHO is proof that you don't have to be 'all in' to make good use of technology. Once again, it was the power of human relationships of care, learning and mentoring that keeps bringing people and organizations to join ECHO, and create new programs for their movements. It is an exciting infrastructure, not only because it is effective in sharing even complex know-how, but because it has the best human values engineered right into it. ECHO is also a story of waiting for the right kind of technologist, someone who didn't simply try to impose a commercial technology playbook on a human network.

Thank you for continuing to read and share. In my next Story I will conclude this chapter on the promise of technology.