The #SeePainMoreClearly Phase II Pain in Dementia Social Media Campaign: Implementation and Evaluation Study.

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 aimed to scale our pain-in-dementia knowledge mobilization pilot initiative (ie, #SeePainMoreClearly) to several social media platforms with the aid of a digital media partner. The goal of the initiative was to increase awareness of the challenges in the assessment and management of pain among people with dementia. A variety of metrics were implemented to evaluate the effort. Through this work, we endeavored to highlight key differences between our pilot initiative (which was a grassroots initiative), focusing largely on Twitter and YouTube, and the current science-media partnership. We also aimed to generate recommendations suitable for other social media campaigns related to health or aging. METHODS: Evidence-based information about pain in dementia was summarized into engaging content (eg, videos) tailored to the needs of various knowledge users (eg, health professionals, families, and policy makers). We disseminated information using Facebook (Meta Platforms), Twitter (X Corp), YouTube (Alphabet Inc), Instagram (Meta Platforms), and LinkedIn (LinkedIn Corp) and measured the success of the initiative over a 12-month period (2020 to 2021). The evaluation methods focused on web analytics and questionnaires related to social media content. Knowledge users' web responses about the initiative and semistructured interviews were analyzed using thematic analysis. RESULTS: During the course of the campaign, >700 posts were shared across all platforms. Web analytics showed that we drew >60,000 users from 82 countries to our resource website. Of the social media platforms used, Facebook was the most effective in reaching knowledge users (ie, over 1,300,000 users). Questionnaire responses from users were favorable; interview responses indicated that the information shared throughout the initiative increased awareness of the problem of pain in dementia and influenced respondent behavior. CONCLUSIONS: 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. The evaluation metrics suggested no considerable differences between our pilot campaign and broader initiative when accounting for the length of time of each initiative. The limitations of large-scale health campaigns were noted, and recommendations were outlined for other researchers aiming to leverage social media as a knowledge mobilization tool.

The Effectiveness of Social Media in the Dissemination of Knowledge About Pain in Dementia.

OBJECTIVES: Traditional knowledge dissemination methods have been ineffective in leading to timely and widespread changes in clinical practice. Social media have the potential to reach broader audiences than more traditional methods that disseminate research findings. We evaluated the effectiveness of using social media to mobilize knowledge about pain in dementia. METHODS: We developed an online repository of evidence-based content (e.g., guidelines, assessment approaches) and a video about pain in dementia. The video was uploaded to YouTube, a video-sharing platform. We collaborated with stakeholder organizations on a 5-month social media campaign (#SeePainMoreClearly) on Twitter, a social networking site, to disseminate digital content about pain in dementia. The response to our initiatives was evaluated with Web and social media metrics, a video questionnaire, and a comparison of the extent of Twitter discussions about pain in dementia before and during the campaign period. RESULTS: Web metrics showed a great reach of the initiative: The #SeePainMoreClearly hashtag received more than 5,000,000 impressions and was used in 31 countries. The online repository was viewed by 1,218 individuals from 55 countries, and the video resulted in 51,000 views. Comparisons between the pre-campaign and campaign periods demonstrated a higher number of posts about pain in dementia during the campaign period. CONCLUSION: The findings have implications for closing the knowledge-to-practice gap in dementia care through faster mobilization of scientific findings. Our campaign compares favorably with other health information dissemination initiatives. The methodologies used in the study could serve as a framework for the development of social media initiatives in other health disciplines.

A paradigm change to inform fibromyalgia research priorities by engaging patients and health care professionals.

Background: Research objectives should be focused toward advancing knowledge that has meaningful impact on health. However, research agendas are mostly driven by the health care community, with limited input from patients. Aims: In this study, prioirities of uncertainties for the management of fibromyalgia (FM) that could propel future research were identified by a defined process using the James Lind Alliance Priority Setting Partnership (JLA-PSP) methodology. Methods: As a first step, a survey was distributed across Canada that engaged patients, caregivers, and health care professionals to provide narrative input to eight open-ended questions regarding FM care. Responses were thematically condensed and synthesized into an initial list of 43 uncertainties used to guide a comprehensive literature search. Questions already effectively addressed in the literature were excluded, leaving 25 uncertainties that were ranked during a one-day consensus workshop. Results: Three broad themes emerged: the value of personalized targeted treatment and subgrouping of patients; the efficacy of various self-management strategies and educational initiatives; and identification of the ideal health care setting to provide FM care. Opioids and cannabinoids were the only specific pharmacologic interventions ranked as needing further research. Conclusions: The prioritized questions highlight the importance of recognizing the heterogeneity of FM symptoms, the need for a personalized treatment approach, and a better understanding of the value of self-management strategies. This is the first study that uses an established and transparent methodology to engage all FM stakeholders to help inform researchers and funding bodies of clinically relevant research priorities.

Contexte: Les objectifs en matière de recherche devraient se concentrer sur l'avancement des connaissances qui ont des effets significatifs sur la santé. Toutefois, les programmes de recherche sont surtout définis par le milieu des soins de santé, tandis que la contribution des patients demeure limitée.Objectifs: Dans cette étude, les incertitudes prioritaires pour la prise en charge de la fibromylagie, qui pourraient donner lieu à de futures études, ont été déterminées selon un processus fondé sur la méthodologie du Partenariat d'établissement des priorités de la James Lind Alliance.Méthodes: Comme première étape, une enquête a été distribuée partout au Canada auprès de patients, de prestataires de soins et de professionnels de la santé afin d'obtenir leurs réponses sous forme narrative à huit questions ouvertes concernant les soins relatifs à la fibromyalgie. Les réponses ont été regroupées par thèmes et résumées dans une liste initiale de 43 incertitudes qui a été utilisée pour orienter une recherche exhaustive de la littérature. Les questions déjà abordées de manière efficace dans la littérature ont été exclues, tandis que les 25 incertitudes restantes ont été classées dans le cadre d'un atelier de recherche de consensus d'une journée.Résultats: Trois grands thèmes se sont démarqués : l'utilité des traitements ciblés personnalisés et de la division des patients en sous-groupes; l'efficacité de diverses stratégies d'auto-prises en charge et initiatives éducatives; et la détermination du cadre de soins de santé idéal pour dispenser les soins relatifs à la fibromyalgie.Conclusions: Les questions priorisées soulignent l'importance de reconnaître l'hétérogénéité des symptômes de la fibromyalgie, la nécessité d'une approche de traitement personnalisé et une meilleure compréhension de l'utilité des stratégies d'auto-prise en charge. Il s'agit de la première étude à utiliser une méthodologie établie et transparente pour impliquer toutes les parties concernées par la fibromyalgie pour aider à faire connaître aux chercheurs et aux agences de financement les priorités pertinentes sur le plan clinique.

Exercise therapy for fibromyalgia.

Fibromyalgia syndrome, a chronic condition typically characterized by widespread pain, nonrestorative sleep, fatigue, cognitive dysfunction, and other somatic symptoms, negatively impacts physical and emotional function and reduces quality of life. Exercise is commonly recommended in the management of people with fibromyalgia, and interest in examining exercise benefits for those with the syndrome has grown substantially over the past 25 years. Research supports aerobic and strength training to improve physical fitness and function, reduce fibromyalgia symptoms, and improve quality of life. However, other forms of exercise (e.g., tai chi, yoga, Nordic walking, vibration techniques) and lifestyle physical activity also have been investigated to determine their effects. This paper highlights findings from recent randomized controlled trials and reviews of exercise for people with fibromyalgia, and includes information regarding factors that influence response and adherence to exercise to assist clinicians with exercise and physical activity prescription decision-making to optimize health and well-being.

The Institute of Musculoskeletal Health and Arthritis (IMHA) Knowledge Exchange Task Force: an innovative approach to knowledge translation.

This article will introduce the concept of Knowledge Translation (KT), as defined and used by the Canadian Institutes of Health Research (CIHR). The Institute of Musculoskeletal Health and Arthritis (IMHA), one of the 13 institutes under the umbrella of CIHR, has created the Knowledge Exchange Task Force (KETF) to research KT and to determine how to best develop and implement KT initiatives within the Canadian research milieu. Task Force goals, objectives and activities will be outlined and summarized in poster form. KETF Members, or Research Ambassadors, will be recognized, along with the names of their Parent Organizations. The paper will detail the process of KT, as defined by CIHR, and a promising KT project created by IMHA to build communication pathways between scientific researchers, consumers and multiple stakeholders with the ultimate goal of improving the quality of life of all Canadians.