For many people with CF, remembering their daily treatment regimens and medication schedules can seem daunting and difficult. Most patients acclaim that if they had a resource, such as an app, that would make their health management easier to handle, that they would love to try it. In addition to remembering treatment schedules and medications, CF patients have to also keep track of doctors, their personal health stats, and usually have more questions than answers regarding their disease and current health breakthroughs that are on the market. Listed here are two of the handful of apps that developers have opened (or are hoping to open) to the market to simplify and improve the life of the CF community as a whole.
A pilot data program
Members of the cysticfibrosis.com community devised a novel ideal to use a private digital platform to accelerate research and discovery and then bring the asset to market. The new project is currently in the pilot phase with 20 CF patients' DOL's from the community getting ready to use the portable genomics app for 30 days.
One DOL from Arizona says, "Now I can delete 3 other apps [because] this one is so comprehensive."
This app has 18 sets modules under the categories of medical, treatment, nutrition, genomics, and lifestyle. Patients are also making their own modules and customizing the program.
This app allows CF patients to be part of the research process and the business model. The data put in by the patients is automatically as possible including mobile devices. Patients are working with custom modules made by the patients themselves.
The founders of the program are building partnerships with other device makers and data providers like Pond Healthcare and their AirSmart spirometer, Pari Respiratory and their LC nebulizer and compressor, PlumeLabs for data forecasting, and Tasso, GenTegra for a whole blood draw device.
They also have an exciting partnership with the University of British Columbia and scientist, Corey Nislow. Nislow will be studying exome sequencing and gut microbiome for the pilot program.
Cysticfibrosis.com is asking community members to join in their efforts to build tools and devices that can help the CF community and to participate in their business model. Participants can sponsor a study and work with others to design the next early phase discovery project, their next-gen clinical trials, or their current post-marketing studies. Those interested can contact Imogene@cysticfibrosis.com.
A pilot participant for Texas says, "patients should use this because it could help make them very proactive and responsive to their health.
From Indiana, another piloter says, "CF'ers are intense caregivers. I notice cause and effect long before the doctors.
Another piloter from Maine says, "this could promote independence for my daughter and she could also share the information with me, who is her top healthcare advocate."
As Tim Berners-Lee said, "It's difficult to imagine the power that you're going to have when so many different sorts of data are available."
My Fight Against Cystic Fibrosis iOS iPhone App
The pilot app is not the first app designed to help patients with CF manage their disease. In 2010, app developer Brian King, who has CF himself, designed the iPhone app, "My Fight Against Cystic Fibrosis."
King, who designed, developed, and programmed the app on his own, says his mission with the app was to allow individuals with CF the opportunity to have a useful resource and tool to help them fight their CF. King hopes that the app will be a benefit to patients with CF and provide a source of communication and understanding to CF patients everywhere, as well as to their families, friends, and CF care team members.
The app has several organizational key features that include education about CF, as well as the latest scientific and research news about CF treatments and therapies. The app also includes a dynamic design the presents users with interactive modules that helps patients learn how to keep track of their crucial treatment regimens and helps them monitor their health progress in actual time.
Some of the app's most useful features include:
- General knowledge and education about CF, including statistics, nutritional needs, and novel treatments, which has been deemed as a helpful tool for sharing information about the disease with those who are less familiar with its traits.
- A news posting with regularly updated “Latest Research” for all things concerning CF. The program chronicles the newest clinical trials currently underway, the latest experimental therapies and treatments, and an updated listing of research findings and statistics.
- A section which includes “CF Programs,” where users can enter their own state and see a listing of CF-accredited health and clinical programs that are sub grouped by cities. Every single listing in this Programs section will include all of the data that a CF patient might need in order to properly research a program, including the phone number and address of the hospital or center and the names of all essential doctors with clickable phone numbers and email addresses to simplify the user's contact capabilities.
- A section, titled “Treatments,” that allows the users to search and read up on all of the available treatments for CF that are currently on the market. Treatment information might include oral medications, inhalants, nasal sprays, and airway clearance. This section provides each listing with detailed descriptions and clear photographs or diagrams.
- The section, titled "My Regimen," where users are able to make their own customized daily medication and treatment regimen. This app section also includes a feature that allows the user to click on a list of their daily medications so that they can quickly and easily show them to their physician or CF care team. The medication list includes the names of each medication, the dosage, and the times in which they need to be taken each day.
- A section, title "My PFTs," where users can put in all of their important health information, including age, weight, height, and FEV1. The app saves this information as it is put in over time and can provide and easily-read graph format of all data.
- The section, "Grains of Salt," which is meant to stand for the saying, "take this advice with a grain of salt." In this section, users can read information in a question and answer display. This section is basically a collection of frequently asked questions from CF patients and their loved ones. Users can ask their own questions and see their questions answered.
- The section, titled "About this App," provides users with information regarding the app, including a personal story from the developer, as well as a regularly updated history of the app and its progress. In this section, King shares his own journey and struggles with CF, as well as some insights into the very practices that King has found to significantly improve his overall health. Some of these practices include fitness tips and essential oils therapy.
- The app also features a "Feedback" section that allows the user to contribute their own ideas, advice, and concerns about the app as they explore it.
Imogene (2017, July 14). An App for Cystic Fibrosis to Bring Data to Market. [Web]. In CysticFibrosis.com. Retrieved from: http://cysticfibrosis.com/cystic-fibrosis-data-valuable/
Moore, C. (2014, October 6). My Fight Against Cystic Fibrosis iOS iPhone App Helps Patients Manage CF. [Web]. In Cystic Fibrosis News Today. Retrieved from: https://cysticfibrosisnewstoday.com/2014/10/06/my-fight-against-cystic-fibrosis-ios-iphone-app-helps-patients-manage-cf/