While speaking at FutureMed, Sean Ahrens explained his frustrations as a patient suffering from Crohn’s disease and his dissatisfaction with conventional treatments for the condition. To deal with the problem and to help others with Crohn’s or colitis, he created Crohnology, a patient-to-patient information sharing platform.Ahrens explained how the platform fits into the broader context of the “patient revolution,” in which patients are becoming increasingly motivated to become active participants in their healthcare. This revolution is being fueled by mobile tools and social media, he said. And it is becoming necessary, as our healthcare system struggles to deal with rising cost pressures, an uptick in chronic conditions and as doctor–patient interaction becomes increasingly limited. His Crohnology platform enables patients to share health and treatment information with each other, and to monitor the success of their treatments over time. This strategy enables patients to better deal with chronic conditions. Many patients with chronic conditions such as Crohn’s have already turned into self experimenters. Ahrens himself fits into that mold, having intentionally infected himself with parasitic worms to see if they could help manage the disease. During his talk, he explained that he ordered a $3000 dose of the parasitic worms and created Crohnology, in part, to leave a “paper trail” to document the experiment. Once the system was up and running, he used it to track his health over the course of an entire year and was able to gain a number of powerful insights from it. The system is even more powerful when it is opened up to a broader community of patients, he explained. “If we make better tools, we can make better conclusions.” The system can be used to collect many anecdotes from patients. After all, anecdotes are “data that we just haven’t scrubbed well yet,” he said. Ahrens summarized his talk by saying: “The impact of these tools on health is going to be tantamount in degree to the overthrow that social media caused to traditional media.”
Damaged Care: The Musical Comedy About Health Care in America, written and performed by Greg LaGana, M.D., and Barry Levy, M.D., highlights issues of concern to healthcare workers, patients, and others.
SENSOREE crafts wearable technology and interactive installations promoting 'extimacy' or externalized intimacy.