Dorothy Andersen, M.D., was the first to write a full report describing cystic fibrosis in 1938, and since her initial writings, gradual improvements have been added to improve CF health management for patients. Technological improvements have assisted doctors and researchers at each step as new therapies, drugs and devices have been ushered to market; however, it has really only been the past 10 years that technology has joined the side of patients and families as they seek access and knowledge to better treatment and health care for themselves.
The use of technology has vitalized the effort against CF for patients by allowing quick access to resources regarding the disease, as well as by creating a globally strengthened CF community. The internet and the dawn of social media were the first steps in closing the gaps that existed between patients from state to state as well as from one country to the next. This community, forged from technological connection, provides strength as patients engage others with CF who share in a part of their story of sickness. The power of this community comes from creating a collective will to overcome the disease made from a finely woven web of shared sickness and encouragement.
The connection between patients fostered from this technological web has served to motivate patients to educate themselves and find the best care possible against the disease. As patients seek the means to better care for themselves technology again has served to fill this role; one way in particular is with the development of smart phone apps dedicated to increasing knowledge of the disease as well as using innovative ways to track a patient’s health over time.
Brian King, a 25 year old app developer, created the app, “My Fight Against Cystic Fibrosis,” as a resource to patients and families. Brian, who also has CF, came to understand that there was a need for patients and families to have quick, immediate access to information about their own health in a centralized format.
“I wanted them (CF patients) to be able to learn more about their disease,” King explained and, “have tools to help them control it, share experiences with others, and have it all in one place… in the palm of their hand.”
As part of my weekly column, I was fortunate enough to be able to ask Brian a few questions about the app and his thoughts on its affect on managing CF.
How did your own experience with CF lead you to develop the My Fight Against CF app?
I happened to get really sick about 4 years ago and went through a year or two of constant hospitalizations. During that time it was hard for me to keep track of everything I had to do to manage my health and remember all of my medical history so that I could tell the doctors. That’s when I realized how handy it would be to have an app that could keep track of those things for CF patients so that they never had to have the extra stress of trying to remember it all.
How has the use of technology helped you in your management of CF?
The use of technology has helped me greatly. Simple things like setting my alarm to take antibiotics all the way up to more complex things like making a spreadsheet to remember all of my medications and their dosages.
How can the app be used by patients and families to better manage their health and help provide a better connection with their doctors and healthcare team?
The app is packed with tools and education to help each patient manage their health in a more efficient and effective way. Along side education, the app has some great tools like the ability to log the patient’s health history (including past surgeries, allergies, antibiotic resistance, X-rays, etc), creating medication/appointment reminders, creating medication lists, graphing pulmonary function trends, lists three CF Related News Feeds (including cysticfibrosisNewsToday.com) with articles on the latest research in the community, and much more. All these combine to help connect the gap between doctors and their patients. Patients are going to be more up to date on their history and trends by having it all in the palm of their hand, and not having to try to memorize every single procedure or medication that they have had in the past.
What are some of the new features in the app?
Some of the new features that users can find are medication and appointment reminders, custom notes for the patient’s history, 3 news feeds instead of one, motivational quotes, some design updates, and the Canadian clinics have been added to the app.
How do you foresee CF health management changing in the future with technology?
I see it change the way we manage our health in a big way. I think patients are going to feel more comfortable and on top of their health management. I believe the doctor-patient relationship will become better connected as patients will likely have the ability to do some of the primary health testing such as pulmonary function, checking their hydration levels, etc, all at home on their phones or other devices and will be able to send it straight to their healthcare team without even leaving the house.
Why I Personally Use the App
I have found that the “My Fight Against Cystic Fibrosis” app empowers someone with the disease by having quick, centralized access to information about their own health. I particularly appreciate the app feature that provides a log for hospitalizations, which has helped me in my own health goals. I seek to push myself after each stay in the hospital to remain out longer from one hospital stay to the next. It is a bit silly and certainly archaic, but in the past I have done this by tracking the weeks since my last stay in my head. I’ll count back the weeks and think, “I am on week six, so I can definitely make it now to week 8.” However, once I enter the hospital I quickly lose track from my last stay and begin again. The app allows me the convenience to track my stays and to know how long it has been since my last tune-up, and just as important, it allows me to compare my progress to past hospitalizations over the number of years I use the app.
The second application I find myself excited to use is the log to record my pulmonary function tests (PFTs). It is interesting that I would be excited about this particular feature because in past years I have grown a steady antipathy to the PFT lab. The root of it is that I hate seeing my lung function decline over time. If you’ve ever seen the movie The Princess Bride, to me, that small PFT chamber may as well be the torture chamber that prince Humperdinck sends Westley to. My doctors know this and always have to put up with me dodging to take my PFTs when I am first hospitalized.
However, my excitement to track my PFTs through the app comes from the possibility that my future lung function may be better than it is today with continual development of increasingly effective CF therapies. The app by Brian King provides me the ability to track these numbers and create a graph on my phone, thereby creating a pictorial representation of my hope for my health and the future.
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