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  1. Simon Stones1,2,3,
  2. Reece Henderson1,
  3. Des Quinn1
  1. 1Fibromyalgia Action United Kingdom, Paisley, United Kingdom
  2. 2European Network of Fibromyalgia Associations, Heist-op-den-Berg, Belgium
  3. 3University of Leeds, School of Healthcare, Leeds, United Kingdom


Background Patient organisations have traditionally provided support for patients. However, the method by which people seek support is increasingly desired across social media, particularly among certain populations within the fibromyalgia community who rely on social media as a key form of communication. In addition, the activity of patient organisations on social media is evolving to encompass greater advocacy and awareness activities with a growing target population of different stakeholders. To address this growing demand, Fibromyalgia Action UK conducted an online survey to inform the organisation’s future social media strategy.

Objectives The aim of the survey was to understand the preferences of people interacting with Fibromyalgia Action UK’s social media platforms, in order to inform the organisation’s evolving social media and wider communications strategy.

Methods An online survey was disseminated via Facebook, Twitter and a post on Fibromyalgia Action UK’s website over a one-month period, between October and November 2018. Questions focused on general demographics, social media branding, style and content.

Results A total of 301 people responded to the survey, 89% of whom had been diagnosed with fibromyalgia and 5% of whom were a friend or relative. More than half of respondents (60%) were aged between 45 and 64 years, with only 13% of respondents aged under the age of 35 years. 91% of respondents felt happy with the organisation’s current branding, with 78% rating the organisation’s social media sites as “Good’ or “Excellent’. While 92% of respondents were happy with the organisation’s current social media content, around half (51%) suggested an increase in the amount of visual posts (such as infographics), and two thirds (66%) suggested an increase in news articles and patient/carer stories.

Conclusion The survey highlights the need for more visual, engaging content to inform and educate people about fibromyalgia and related activities. Respondent demographics also highlighted a limited interaction on social media with younger people under the age of 35 years. Together, these findings have prompted the organisation to launch of a new campaign, titled #BecomeFibroAware, using visual content to inform, educate and empower the community, as well as an increased focus on engaging younger people with fibromyalgia.

Reference [1] Armstrong, S. Social networking for patients. BMJ 2016; 354 :i4201.

Acknowledgement Fibromyalgia Action UK thanks the Board of Trustees and staff for their involvement, and to all of those who participated in the survey.

Disclosure of Interests Simon Stones Consultant for: SS has provided consultancy services to Envision Pharma Group, though this is not related to the contents of this abstract., Speakers bureau: SS has undertaken speaking engagements for Actelion, eyeforpharma, Four Health, Janssen and Roche, though these are not related to the contents of this abstract., Reece Henderson: None declared, Des Quinn: None declared

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