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Social Media And Patients: SmartPhone Apps

April 14, 2014

This is the second Blog Post in a series that examines the use of different social media channels by patients and why from an emotional perspective it is used by so many patients with chronic and rare diseases.

The use of social media tools, smartphone apps, and online communities are used by pharmaceutical companies and patient advocacy groups to reach out and provide support to patients and their families affected by rare or orphan diseases. The purpose of these programs is to help the rare disease community connect with others with rare diseases to help eliminate the aloneness the patient may be feeling. Other purposes of smartphone apps for the rare disease community :

•   Provide a mechanism for monitoring and tracking a disease

•   Provide remote diagnostics

•   Information on disease

•   Communication with medical support team.

According to the Pew Internet & American Life Project Mobile Health Report :

•   85% of American adults own a cell phone, with 53% of those owning smartphones

•   52% of smartphone owners gather health information on their phones

•   19% of smartphone owners have at least one health app on their phone

I – Epidermolysis Bullosa (EB)

Epidermolysis Bullosa (EB) is a rare genetic connective tissue condition that involves very fragile skin that blisters or tears with the slightest trauma or friction. EB patients are known as “Butterfly children” due to the fragile nature of the skin, similar to the fragility of the wings of a butterfly. There is currently no cure or effective treatment, outside of daily wound care, pain management, and preventative bandaging.

The patient advocacy group DEBRA International, in November 2013, announces a new smartphone app, iscorEB (instrument for Scoring Clinical Outcomes for Research of EB), to be used for scoring the severity of a patient’s EB. iscorEB is developed by The Hospital for Sick Children (SickKids) in Toronto, Canada. iscorEB quantifies the severity of EB from both the patient/family and clinician perspective – used to monitor EB progression in clinical practice or by the patient themselves to measure changes over time. iscorEB is abailable FREE of charge from the iTunes Store and will be available soon on Google play stores.

II – Hemophilia

There are many Hemophilia apps currently available with the purpose of helping patients track their hemophilia healthcare information.

BioRx, a specialty pharmacy and infusion services provider located in Ohio, announces in October 2013, the launch of a new app, MyFactor. The purpose of MyFactor is to give both patients and caregivers a place to monitor and manage home treatment for Hemophilia and related bleeding disorders. The app provides the ability to record, store, view, and transmit medical information related to a deficiency of clotting Factor VII, VIII, IX, XIII, or von Willebrand factor. MyFactor is available on iTunes. A release for Android devices is planned for 2014.

Please Note: “Applications-internet” by The Tango!Desktop Project | Wikimedia Commons.

Copyright © 2012-2014, Orphan Druganaut Blog. All rights reserved.

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