CFTechnology and Portable Genomics are teaming up to bring a private and CF-tailored health data management system to your mobile phone. Over twenty years ago, Jeanne Barnett, founder of CysticFibrosis.com and CFTechnology.org, created a website and message boards for caregivers and people with CF. Her driving belief was that patients and caregivers have an abundance of experience, knowledge, and hope to share with one another.
This mission has brought her to work with Patrick Merel, a molecular biologist and the founder of Portable Genomics. Patrick believes that people are the creators of crucial health data—genetic, biometric, medical, behavioral and lifestyle—and that this data should be controlled by patients and caregivers themselves. They are the stakeholders in better disease management and searches for cures.
Although CFTechnology was approached by application developers in the past, Portable Genomics was the first organization that did not propose to own or access people’s health data without their permission.
This application is unique in two ways:
1) The patient or caregiver can personalize the type of data being collected.
2) The patient or caregiver can authorize when and to whom their data is released.
Many CF patients and caregivers would like a streamlined way to store, transmit and share their health information. They want to track their meds, food consumption, weight, blood sugar, sputum culture and bloodwork results, activity, PFTs, sleep, mood and more.
They also want to participate in scientific research that might be useful themselves and others—to inspire new insights and studies, treatments and lifestyle choices.
Portable Genomics provides an ideal way to collect and organize health information, analyze trends and transmit information to doctors and other care providers, and selectively share data with research institutions.