THE IMACT OF ONLINE PLATFORMS ON HEALTHCARE ADVOCACY EFFORTS FOR PATIENTS WITH POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME (POTS)
Date
2020-05
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Publisher
University of Delaware
Abstract
The creation of the internet has significantly changed traditional disease
advocacy efforts. This technology has led to the creation of online website and social
media platforms with a greater ability to advocate for their communities than
previously possible. For rare and lesser-known conditions, these platforms have a
more significant impact as they allow those impacted across the world to unite around
the cause. Postural Orthostatic Tachycardia Syndrome (POTS), a form of
dysautonomia, is not considered a rare disease. However, it is not well-known
amongst the public or medical community and has experienced similar advancements
to conditions classified as rare.
For POTS patients, social media and online organizational platforms, the most
prominent being Dysautonomia International, play a crucial role in advocacy efforts.
This study examines how online platforms have increased the effectiveness of POTS
advocacy and conducts an in-depth analysis of the most prominent advocacy
organization, Dysautonomia International, to investigate which digital elements have
allowed for the most significant advances, as well as where the platform externally
directs its audience in comparison to the advocacy occurring on the platform itself.
This area of research is just beginning to be explored, but the significance of
online platforms is recognized by patients and physicians alike. Social media in
particular is a newer advancement and future research may further examine its
contributions to patient advocacy efforts.
Description
Keywords
public policy, POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME, healtcare advocacy