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Technology’s Place in the Lives of Patients with Cystic Fibrosis
Newcomer M1, Conger D1, Rudnick C1, Noland D1
Authors Information: 1. NetNoggin, LLC, Frederick, MD USA email: info@netnoggin.netTechnology and Cystic Fibrosis

[customfont1]Technology and Cystic Fibrosis[/customfont1]

Big data is telling us that despite cystic fibrosis (CF) being a rare disease, organizations are developing, investing, and promoting technology in the form of an app or device to help patients and caregivers manage the disease. Although the market is small, there is clearly an opportunity for organizations to improve lives. However, these technologies may not be solving the right problem.
We compared two categories of apps used by CF patients, those that are designed for all audiences, and those specifically created for patients with CF. We looked at where the app was created, suggested age group, and how the app was being utilized. Based on this data, the United Kingdom and the United States are currently the “hot spots” for health-app development (used by patients with CF).

Click Table 1 below for the results:

[customfont1][em]Apps Used by CF Patients[/em][/customfont1]


[customfont1]Geography and Technology Development[/customfont1]

The US and the UK develop most of the technology used by CF patients Moreover, Australia and the US are the only countries listed in Table 1 with CF-specific apps on the market. The UK has one of the highest incidence rates of CF worldwide. Although there are several CF-specific apps in development in the UK and the Spain, they still do not have one on the market. Clearly, developers see opportunity in this niche, but are they fulfilling the correct needs?

Big Data and Technology

According to the analysis conducted by NetNoggin®, the majority of CF-apps mentioned in social media posts in the last two years have been advertisements posted by companies promoting the app. Social media dialogue between CF patients or caregivers about the apps is very limited. This may suggest patients with CF and their caregivers rarely use CF-specific/general-health apps or the apps do not have a large impact on their lives. There are many reasons why this could be happening:
1.  Patients and caregivers are able to handle the management of medication and treatment on their own
2. Patients and caregivers have not adopted a technology/app lifestyle
3. Patients and caregivers lack regular access to a device on which to use an app
4.  Patients and caregivers have other solutions that solve their CF-related needs equally if not better
5.  Patients and caregivers do not like the app
6.  Patients and caregiver are unaware of the app
The majority of the apps mentioned in Table 1 focus on both disease and treatment management. In the analysis of this big data, we discovered patients with CF consider their disease unique to them, and therefore no two patients have exactly the same needs. Management of disease is described as adapting to often-changing routines and requiring a support system or caregiver. Many methods are described as being used to manage treatment including existing technology of electronic reminders and old-school paper calendars. Any new technology or app developed for management of disease or treatment must be able to accommodate the uniqueness of each patient with CF. However, disease and treatment management may not be the largest unmet need these patients and caregiver experience.


Gratitude: came in my inmail!


Imogene attends: Deep Tech Pharma Philadelphia April 10, 2019