Creating a Network of Ourselves

The seismic shift to a participatory online culture has made us all co-creators of the content we consume. Simple technology tools enable us to write and publish to the Web with a single click. We can mix and mash music to make the tracks and ringtones we like. Masters of our own content destiny, we can write, direct, and even star in our own films—and we can share them with vast audiences via broadband or high-speed mobile networks. The result is a culture in which every individual can be a publisher, photographer, or performer. These empowered individuals no longer have to wait for companies to sell them the content they want. They can take the tools available to them and build what they want for themselves.

In essence, we can create, access, and share what we want, when and how we want it. Increasingly, we are taking charge of our content experiences. The content creation and distribution landscape will never be the same. While this newfound freedom of self-expression is both liberating and invigorating, we're only beginning to understand what we can achieve when we use technology to create a network of ourselves.

The advance of more democratic content creation and collaboration tools has whetted our appetites for more content on our terms. Like the invention of the printing press, these technologies are part of a revolution. We don't fully comprehend this change because we're in the middle of it, but it's happening at break-neck speed and will surely transform every aspect of our lives.

A recent interview with Sharon Terry, president of the Genetic Alliance, a Washington, D.C.-based international coalition of more than 600 advocacy, research, and healthcare organizations that represent millions of individuals with genetic conditions and their interests, gave me a glimpse into our bright, new future. What began as a simple discussion about how medical data can and should be organized soon evolved into a stimulating exchange about what can happen when consumers, individuals, and lay advocacy groups work together and partner with professionals. Terry's work—and success—speaks volumes about the transformational power of participation. Paired with free access to critical content, it can truly be a catalyzing force for translating medical research into results.

When Terry's two children were diagnosed in 1994 with pseudoxanthoma elasticum (PXE), a rare genetic condition that causes vision loss, premature wrinkling, and cardiovascular and gastrointestinal disease, she felt powerless. The disease wasn't high on the radar of most researchers, and she felt she had to find a way to change that. She and her husband made the profound decision to be more active participants in their healthcare decisions: they not only learned about the disease, they actually developed a way to work with researchers to coordinate efforts and accelerate the search for a cure. Within six months the Terrys had organized dozens of volunteer outreach efforts, laid the groundwork for an epidemiological study of the disease, and created the PXE International Blood and Tissue Bank, a central repository of samples from individuals afflicted with the disease. The Terrys are also the conveners of the PXE International Consortium, under whose auspices all significant PXE research is done.

Today researchers are closer to a cure for PXE, and more importantly, the world is closer to embracing a new model for accelerating research into a wide range of life-threatening diseases and conditions. The Terrys recently expanded their healthcare crusade to include similar efforts for all individuals with genetic conditions by founding the Genetic Alliance Biobank, a cooperative biological samples and data repository that allows lay advocacy and community organizations to bank and manage samples and data for all genetic conditions worldwide. The result is an acceleration of research both within and across diseases by providing access to fully protected, linked samples in a centralized location.

The Terrys worked to develop a do-it-yourself method for banking DNA, tissue, cells, and data. Working with friends who had laboratories, they learned to extract DNA, aliquot (break the liquids into small quantities, suitable for single experiments), and archive it. Refining systems for tracking samples, they integrated enormous amounts of data—medical records, self reported data, and physician exams—with the biological samples.

As they refined their needs, they forged partnerships with Eric Johnson of PreventionGenetics, a biobanking and genetic testing company, and Arthur Holden, who developed a Swiss-grade data banking system. Together with several other entrepreneurial individuals, they created an infrastructure that any organization can easily use. Establishing their own IRB to provide careful oversight, they developed template model documents for all aspects of the enterprise—from patient decision-making to material transfer agreements with researchers who are using the samples and data.

"It is simply a co-op model applied to a high-tech problem," Terry says. Her remarkable work bears testimony to the tremendous power of participatory content, particularly when it is openly distributed and passionately maintained by individuals who care.