August 2, 2011

Mind the Gap: Peer-to-peer Healthcare

Mobile, Social Technology

The Pew Internet Project studies the social impact of the internet.

Right now the most interesting and important impact is that mobile, social technologies are inviting us to participate in the online world.

Instead of sitting back and letting information wash over us, mobile social technologies allow us to jump in ourselves.

This new zeitgeist of participation is transforming political campaigns, the news business, the entertainment world, and yes, health care.

Just like peer-to-peer file sharing transformed the music industry by allowing people to share songs, peer-to-peer healthcare has the potential to transform the pursuit of health by allowing people to share what they know. It is the confluence of two powerful forces:

  1. our ancient instinct to seek and share advice about our health;
  2. our newfound ability to do so at internet speed and at internet scale.

Peer-to-peer healthcare acknowledges that patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people. Technology helps to surface and organize that knowledge to make it useful for as many people as possible.

I’ll spend the next few minutes unpacking the data that proves this as a concept. I’ll also point out where I see some roadblocks and some opportunities. Then I’ll ask for your help in thinking through how this is going to develop over the next five years or so.

The Kingdom of the Sick

First, a story from the other side of the country: Silicon Valley.

The Web 2.0 Summit is an annual meeting of high-powered executives and leading thinkers. The stage backdrop last fall was this imaginary map of the online world and the territories that have been claimed by different companies. It’s a whimsical representation of the so-called “points of control in the battle for the network economy.”

Mark Zuckerberg, the founder of Facebook, came on stage and said,

Your map is wrong. The biggest part of the map has got to be uncharted territory. This map makes it seem like it’s zero-sum, but it’s not. We’re building value, not just taking it away from other companies.

I found that comment so refreshing and idealistic. Leave aside Zuckerberg’s billion dollars and the cut-throat competition of Silicon Valley for a moment and think about what his statement means for you, for all of us. Here’s what I think it means:

We know something important is out there, and it is big, it is potentially world-changing and we are idealistic enough and brave enough to believe we can prepare for it and even take advantage of it.

The second thing that struck me is that a map of the health world would be similar. For most people, it is unmapped, unfamiliar territory.  As Susan Sontag wrote:

Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

It’s not surprising that when someone gets dropped into the kingdom of the sick, they grab their phones, they grab their laptops, they grab their loved ones, and they go. They go into that unfamiliar area of a new diagnosis, a new drug, a new treatment, a new goal to lose weight, quit smoking, or get their numbers under control. They consult experts. They call & search & text. They study up. They band together and form posses.

Pioneers share their maps with newcomers, letting them know which clinical centers are the best for a certain condition. They post warnings – no, that treatment does not work as well as we had hoped. They post new information as they find it – sometimes valid, sometimes not. And the number one thing that people try to do? To get the hell out of the kingdom of the sick.

I bet everyone in this room wants to help them. I bet everyone here is working on something that you hope will change lives, that you hope will build value. And when you are working in health care, your goal is not just building monetary value but hopefully societal value.

We are all on this adventure together, whether you are a researcher, a clinician, a patient, or an entrepreneur. Illness is a daunting mountain to climb and so, by the way, is the reform of our health care system.

My dad was a pretty serious hiker in his day. I remember him coming back from a particularly tough climb, thankful for the people in his group who helped him – and who were helped in return. He repeated the wisdom of climbers everywhere: “the mountain doesn’t care who you are.”

Illness and health care – like a daunting mountain – scares everyone. Your best chance might be to band together with other people, stay humble, ask for – and offer – help.

That’s what I’m here to talk about today: How people are banding together to bushwhack their way out of the kingdom of the sick. Everyone – including the NIH – can learn from their example. We are all on this journey together. And the mountain doesn’t care who you are.