I visited the offices of Patients Like Me in Cambridge, Massachusetts a few years ago.
Two brothers and a close friend were determined to open a new door, after losing a third brother to ALS. A door to science, community and solutions by creating a health sharing portal for people diagnosed with a growing list of difficult diseases and conditions.
When you visit Patients Like Me, as a patient, practitioner or learner, you step into a world of data and stories, of sharing and struggle, of knowledge and community. Every participant contributes to health science and to human connection.
The use of data visualization, patient images, personal history and expression make this site a pioneer in the emerging potential of the web to organize people for science, solutions and systemic understandings. The same mechanism can be applied to food diseases, to food optimization, to the decline in bees, to green experiments, to struggles with unemployment, to child raising and much much more.
At Y Worlds, we observe thousands of web sites and initiatives that follow a similar inspiration. Further, we observe that if we were to imagine a quantum leap in this domain, it would involve a systemic approach to knowledge capture across the world, a coordinated robust scalable effort that extracts knowledge, experience and stories so that they can be processed and synthesized into systems of meaning – for the benefit of all of us. The sheer immensity of data and information also requires a quantum leap towards higher level systemic models that focus on actionable knowledge and cumulative understanding at the surface and derived homework and documentation from the massive sources of information available for easy access beneath the surface.
If a particular drug is working effectively for 98% of people reporting, everyone should know. If there is a side effect that was previously unrecognized, and by sharing among patients it is discovered that the side effect is pervasive and intolerable, new knowledge was created and lives were saved.
Take a moment to visit the people at Patients Like Me. Follow their stories. Imagine what they and we can do if we accumulated and shared knowledge and experience on a larger scale than the immediate circle of people around us- for the benefit of science and Computer Aided Life. Watch for our upcoming research and mapping of Multiple Sclerosis, a condition with no known specific cause or cure.
Read more about our Knowledge Mapping Project