Wednesday, July 24, 2013

If we all work together, everyone wins.

If you're unfamiliar with my blog, I have a 3yo son who was diagnosed at birth with Cystic Fibrosis, a progressive and fatal genetic disease for which there is no cure. On this journey, we have the support of many family members and friends, an outstanding clinical staff, and a National Cystic Fibrosis Foundation Center that is transparent with its outcome data in an effort to promote awareness and research and fund a cure. We're getting there, but it can't happen soon enough. I spend a lot of my free time trying to think of or find ways to make life easier or do things better, things that could have an impact for my son and for other people in the CF community, and ultimately change outcomes. From medication management to insurance headaches and everything in between, I have an image of what life with this disease could look like. It would involve seamless tracking of symptoms and medications and treatments. It would include the opportunity to communicate with your doctor in between visits in a way that didn't involve phone tag. It would allow transparency in all data, allowing me to see the results of my tests and the notes that the doctors have on how I'm doing, eliminating duplication and error. I would more easily be able to find information on my disease that is relevant to me without having to stumble upon it on Facebook. And as for the things that I don't know I don't know? My doctor could be proactive in providing those things to me through the collection and organization of information that is already being shared in chat rooms and on social media. All of these things would be organized and tested and implemented so that I'm not the only person benefiting from what I want or what I want to know. 
I started tracking Drew's health a couple of months ago. I record things like his weight and cough frequency as well as his appetite, stooling patterns, oxygen saturation and daily calorie intake. I've been able to share this information with his doctors to give them a more complete picture of his health in between visits, them learning about obstacles that we face in adherence to daily care regimens and me getting suggestions for ways to overcome some of those obstacles. We've worked together on additional measures to track and have discussed many ways to make life with this disease better while we wait of a cure. Being an active and engaged parent in a complicated chronic disease, what I want most is something to help alleviate the burden of care - the time it takes, the money it costs, the energy is soaks up. Enter is a behavioral analytics platform that turns smartphone data into health insights. I think we can all agree that people behave differently when they aren't feeling well. By collecting your behavior patterns - how often you text, the times of day you make phone calls, different movement patterns - aims to map behavioral patterns to create insights that, long term, have the potential to predict and prevent future problems. It's still being tested out, but I hope the Cystic Fibrosis Community and all chronic conditions will be able to benefit from a tool like 

Cincinnati Childrens has teamed up with to develop a research study for Inflammatory Bowel Disease (IBD) patients to track their symptoms. As part of this study, patients can even get paid for tracking their data.  What if finding a way to treat one chronic illness like Crohns Disease, with something as simple as a mobile app, could help to find a way to treat another chronic illness like Cystic Fibrosis or Sickle Cell Disease. If you know anyone with Crohns or Ulcerative Colitis between the ages of 13-25, have them check out this study. If we all work together, everyone wins.

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