JMIR Publications

ABSTRACT

Background:

Social media platforms have been effective in raising awareness of the underassessment and undertreatment of pain in dementia.

Objective:

After a successful pilot campaign, we scaled up the pain-in-dementia knowledge mobilization (KM) initiative (i.e., #SeePainMoreClearly) to several social media platforms and with the aid of a digital media partner. Throughout this study, we highlight key differences between our original KM grassroots initiative focusing largely on Twitter and the current science-media partnership focusing on a broad variety of social media platforms. We also aimed to generate recommendations suitable for other social media campaigns related to health and/or aging.

Methods:

Evidence-based information about pain in dementia was summarized into engaging content (e.g., videos) tailored to the needs of various knowledge users (e.g., health professionals, families, policymakers). We disseminated information using Facebook, Twitter, YouTube, Instagram, and LinkedIn and measured the success of the initiative over a 12-month period (2020-2021). Evaluation methods focused on web analytics and questionnaires tied to our social media content. Knowledge users’ online response about the initiative, and semi-structured interviews were analyzed through content analysis.

Results:

Over the course of the campaign, over 700 posts across all platforms were shared. Web analytics showed that we drew over 60,000 users from 82 countries to our resource website. Of the platforms used, Facebook was the most effective in reaching knowledge users (i.e., 1,300,000 users). Questionnaire responses from users were favourable. We systematically tabulated differences in outcomes of our original grassroots initiative to those achieved via a digital media partnership.

Conclusions:

Unlike our previous work focusing primarily on Twitter and YouTube, in this investigation, we demonstrated success in directing knowledge users to a resource website with practical information that health professionals could use in patient care along with pain assessment and management information for caregivers and people living with dementia. Evaluation metrics suggested no considerable differences between our grassroots pilot campaign and broader initiative when accounting for length of time of each initiative between our grassroots pilot campaign and broader initiative. The limitations of large-scale health campaigns are noted, and recommendations are outlined for other researchers aiming to leverage social media as a KM tool.