Patients and their tools

Imogene

Administrator
Kevin Kelly made it a fad to measure all aspects of our aliveness. He calls it "the quantified self."

Patients have always kept records using pencils and sheets of scrap paper, notebooks, file folders and cabinets, and computer files.

Patients with a complicated disease like cystic fibrosis have more record keeping and quantifying to do than most.

Spirometry, which measures lung function, has long been the sole tenure of Health Care Professionals. These measurements are the gold standard of testing for CFers

Now, there are personal spirometers, allowing patients to quantify and measure their own lung function. These devices easily connect to the computer and then translate to the web. Data can be sent to Facebook friends and clinics, to be contrasted and compared.

Not surprisingly clinics and doctors may advise patients against using personal spirometers claiming the information is too complicated. Patients, as amateurs, won't know how to handle it. Results may even frighten the novice.

At cysticfibrosis.com we know that patients with a complicated disease have a big learning curve and amazingly many are up to the task.

Kevin Kelly, our modern day Prometheus, knows self-awareness spurs on creativity...causing us all to measure more, looking for and inventing better tools.

We can only imagine the horizon of infinite possibilities this creates using the myriad of data available not only to formal researchers but now to patients as well.
 
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