Working with and near technology for nearly 2 decades, I’ve watched the rise of open source technologies take hold and change the way just about everyone looks at building solutions. But I’m still probably too old fashioned to think of opening something like illness and disease to a community to design a response.
About three years ago, in the fall of 2012, Salvatore Iaconesi was diagnosed with brain cancer. He had a 2 x 3cm tumor on the surface of the right hemisphere of his brain, but he wasn’t satisfied with merely becoming “a patient,” or the one who waits. When the doctor told him the news, he didn’t just seek a second opinion – he asked for thousands of opinions. He posted his brain scans online and asked for people to help him find a cure.
What happened next was remarkable. Within a month, two hundred thousand people had responded – a group that then grew to over 500,000 people, and not just doctors and researchers.
“When you have cancer your life as a complex human is replaced with medical data,” and he continued, “You are reduced to numbers – blood pressure, heart beat, magnetic resonance…”
But Salvatore believed he was more than just his numbers and more than just his disease and wanted to find a cure that was not only medical, but also psychological, social and emotional. People have contributed thousands of images, poetry, and performances to his cure – even a sculpture that is based on 3-D images of his tumor. He says,
I see a cure as a dynamic process, in which multiple doctors, professionals, artists, scientists and others join as a society — to converse, support each other, be open to various contributions and shape solutions that merge humanity, technology, technique, philosophy and art. Creativity and “normal life” become part of the process and bring “diseased” people back to life. To me, a true cure is complete, is human, and has dignity. And it never ends.
Salvatore had a successful surgery and his cancer was removed, but in crafting his cure he was also successful at building a large diverse community of hundreds of thousands around him.
What I love about this story is that there are so many things to take from it. He challenges us to be part of a community. He challenges us to not be satisfied in being a patient, medical or otherwise. But he also challenges us to see that data is more than numbers. Every day I deal with big sets of data; if you are reading this, it’s likely you do as well. Salvatore is also challenging us to remember that often what we see as data is really people. When we look at the half million people that contributed to his cure its easy to see how diverse they were: poets, punks artists, nutritionists, neuro-surgeons. So when we ourselves look at data, at the communities around our products, our brands, ourselves – we must also always remember that the data represent many of different types of people – men and women, young and old, urban and rural, poor and wealthy.
When we use a word like customers or users or followers or audience to lump people all together we can fool ourselves into thinking that the group is made up of just one type of person.
They aren’t all the same. The more we can understand that, the more we can find ways to contribute something meaningful to each of them.