AdheranceLiving With CF

Cure-E-Us…Cystic Fibrosis 2018!

Cure-E-Us!

Strange as it may seem in this time of healthcare anxiety, and a period of sustained political transformation during which our ways of seeing the world, understanding and caring for ourselves physically, mentally, and spiritually are being challenged, we may see this as an opportunity to future cast.

Indeed, the shifts around healthcare contribute to our anxiety, even as anxiety gives rise to new creativity, we can look for hope in strange new places. Blockchain technology (the technology behind Bitcoin and other cryptocurrencies) may hold an interesting key to healthcare.

Fear and confusion signal change. This transformation may be a turning point toward a global health care community based on shared human connection, dedicated to the focus of each person’s data.

Through our current, on going, survey (www.cftechnology.org 637 participants) we are finding that over 90% of the participants are committed to recognizing that their data (genotype and phenotype) presents a new marketplace.

One, where patients can be paid for the hard work they do caring for themselves (with Cystic Fibrosis, this can mean up to six hours a day).

Caring for our own infrastructure becomes a new valuable asset in the making. We are our own scientific labs and perhaps through 21 st century cryptocurrency, new ways can be found to reward adherence and secure payment for our assets which already have great marketable value to others in the healthcare industry

This presents a massive transformation to our present healthcare system. It creates the double-edged cultural sword of decline and renewal. Exponential change ends those things that people once assumed and trusted to be true. At the same time, upheaval opens new pathways to the future.

Let us begin with our pilot study to see if this new plan does indeed work. Is there a marketplace for these new 21st century jobs where we tabulate our own infrastructures?

We have 20 patients willing to work with a specific app designed with the help of the Digital Opinion Leaders for 30 days. They will work with an app and the digital spirometers from Nuvoair and nebulizers and compressors from PARI Healthcare and kits for exome sequencing and gut microbiome from the University of British Columbia.

Each piloter will be paid for this new one month “job” .

Let us begin 2018 this new year dedicated to be Cure-E-Us!

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