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Patient Advocacy: Rare Disease Groups’ Use Of Social Media

October 29, 2014




PatientView, is a UK-based research, publishing, and consultancy group, created out of a belief that “the view of patients should be considered in all important healthcare decisions … formed in response to the emerging powerful new global patient movement.”

PatientView is publishing a series of reports benchmarking the patient movement. Survey data is collected from 1,000 patient groups in 60 countries. The data examines the following 11 therapeutic areas:

•   Cancer
•   Circulatory
•   Diabetes
•   Endocrine
•   Gastrointestinal
•   Mental Health
•   Neurological
•   Rare Disease
•   Respiratory
•   Rheumatology.

One survey question asked whether the patient organization has any of the following social media accounts: website, blog, Twitter account, Facebook account, and other social media tools. The following is observed, per the Report for 2014, for the “rare disease” patient groups:

•   96% have a website

•   75% have a Facebook account

•   36% have a Twitter account

•   18% have a Blog.

The main take-away from this survey question is that social media has become the main means by which patient groups talk to their patient members. The most active therapeutic patient groups in the use of social media, are those that don’t get much media exposure. It is these therapeutic patient groups that “compensate by being active on Facebook and Twitter.” It is the “diabetes” therapeutic patient groups (per the survey) that rank last at the use of social media tools.

Please Note: “Kid Hugging a Rainbow” by Marendo Müller, artwork (Own work) [Public domain] | Wikimedia Commons.

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

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