The medical research community is waking up to something that people with rare disorders have understood for a long time: We’re all in this together. Finding new treatments in time to save lives will require everyone’s efforts—not just doctors and nurses, not just researchers, not just pharmaceutical companies or insurance companies or venture capitalists.
Patients and their supporters have long understood the importance of working to raise funds for research and spreading awareness so that research will receive grant support. But what’s startlingly new is that now patients are playing a role in the research itself.
Cancer and the citizen scientist
“There are cures for cancers buried in our data. Help us find them.” That’s the invitation that Click to Cure, an initiative of Cancer Research UK, extends to citizen scientists. Participation is simple. After walking through a tutorial that explains the parts of a cell, you view examples of normal tissue cells, white blood cells and irregular cells and are then asked to estimate the number of irregular cell cores and judge the brightness of the yellow stain. By applying your human powers of observation to a job that computer algorithms can’t handle, you can help scientists work their way more quickly through the massive amount of data they have accumulated.
Learn more in this video.
Tapping expert opinion
Crowdsourcing is also being applied on an individual level. When told he had brain cancer, Salvatore Iaconesi, an engineer, artist, hacker and 2012 TED fellow who teaches interaction and digital design at Sapienza-University of Rome, Italy, hacked his medical records and put them online. Among the thousands of people who responded on his website were 60 neurologists, neurosurgeons and radiologists who contacted him suggesting techniques for surgery and treatment.
Pushing the boundaries
“Alone we are rare. Together we are strong,” the slogan of the National Organization for Rare Disorders, has never been more relevant than it is today. We are just beginning to tap the potential of what we all can do together to advance the science of treatment. No matter how rare the disorder, there is a global community of patients, researchers and healthcare professionals who can be counted on to help. We are truly only limited by our imaginations.
Pamela Todd’s extensive work in online intelligence, competitive analysis and audits allows her to provide clients with insights into their audiences’ needs and preferences. She puts those insights to work in creating and implementing user-centric, interactive content strategies to reach targeted patients, caregivers, and healthcare professionals.