Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review

BackgroundThe need to include individuals with lived experience (ie, patients, family members, caregivers, researchers, and clinicians) in health research priority setting is becoming increasingly recognized. Social media–based methods represent a means to elicit and prioriti...

Full description

Bibliographic Details
Main Authors: Surabhi Sivaratnam, Kyobin Hwang, Alyssandra Chee-A-Tow, Lily Ren, Geoffrey Fang, Lindsay Jibb
Format: Article
Language:English
Published: JMIR Publications 2022-02-01
Series:Journal of Medical Internet Research
Online Access:https://www.jmir.org/2022/2/e29821
_version_ 1797735369581527040
author Surabhi Sivaratnam
Kyobin Hwang
Alyssandra Chee-A-Tow
Lily Ren
Geoffrey Fang
Lindsay Jibb
author_facet Surabhi Sivaratnam
Kyobin Hwang
Alyssandra Chee-A-Tow
Lily Ren
Geoffrey Fang
Lindsay Jibb
author_sort Surabhi Sivaratnam
collection DOAJ
description BackgroundThe need to include individuals with lived experience (ie, patients, family members, caregivers, researchers, and clinicians) in health research priority setting is becoming increasingly recognized. Social media–based methods represent a means to elicit and prioritize the research interests of such individuals, but there remains sparse methodological guidance on how best to conduct these social media efforts and assess their effectiveness. ObjectiveThis review aims to identify social media strategies that enhance participation in priority-setting research, collate metrics assessing the effectiveness of social media campaigns, and summarize the benefits and limitations of social media–based research approaches, as well as recommendations for prospective campaigns. MethodsWe searched PubMed, Embase, Cochrane Library, Scopus, and Web of Science from database inception until September 2021. Two reviewers independently screened all titles and abstracts, as well as full texts for studies that implemented and evaluated social media strategies aimed at engaging knowledge users in research priority setting. We subsequently conducted a thematic analysis to aggregate study data by related codes and themes. ResultsA total of 23 papers reporting on 22 unique studies were included. These studies used Facebook, Twitter, Reddit, websites, video-calling platforms, emails, blogs, e-newsletters, and web-based forums to engage with health research stakeholders. Priority-setting engagement strategies included paid platform–based advertisements, email-embedded survey links, and question-and-answer forums. Dissemination techniques for priority-setting surveys included snowball sampling and the circulation of participation opportunities via internal members’ and external organizations’ social media platforms. Social media campaign effectiveness was directly assessed as number of clicks and impressions on posts, frequency of viewed posts, volume of comments and replies, number of times individuals searched for a campaign page, and number of times a hashtag was used. Campaign effectiveness was indirectly assessed as numbers of priority-setting survey responses and visits to external survey administration sites. Recommendations to enhance engagement included the use of social media group moderators, opportunities for peer-to-peer interaction, and the establishment of a consistent tone and brand. ConclusionsSocial media may increase the speed and reach of priority-setting participation opportunities leading to the development of research agendas informed by patients, family caregivers, clinicians, and researchers. Perceived limitations of the approach include underrepresentation of certain demographic groups and addressing such limitations will enhance the inclusion of diverse research priority opinions in future research agendas.
first_indexed 2024-03-12T12:57:03Z
format Article
id doaj.art-f51be1d25fe648b5aadeffef9ef5c141
institution Directory Open Access Journal
issn 1438-8871
language English
last_indexed 2024-03-12T12:57:03Z
publishDate 2022-02-01
publisher JMIR Publications
record_format Article
series Journal of Medical Internet Research
spelling doaj.art-f51be1d25fe648b5aadeffef9ef5c1412023-08-28T20:51:09ZengJMIR PublicationsJournal of Medical Internet Research1438-88712022-02-01242e2982110.2196/29821Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping ReviewSurabhi Sivaratnamhttps://orcid.org/0000-0002-3960-0236Kyobin Hwanghttps://orcid.org/0000-0002-7000-2250Alyssandra Chee-A-Towhttps://orcid.org/0000-0003-0220-2717Lily Renhttps://orcid.org/0000-0002-6979-4182Geoffrey Fanghttps://orcid.org/0000-0003-3877-184XLindsay Jibbhttps://orcid.org/0000-0001-6995-2825 BackgroundThe need to include individuals with lived experience (ie, patients, family members, caregivers, researchers, and clinicians) in health research priority setting is becoming increasingly recognized. Social media–based methods represent a means to elicit and prioritize the research interests of such individuals, but there remains sparse methodological guidance on how best to conduct these social media efforts and assess their effectiveness. ObjectiveThis review aims to identify social media strategies that enhance participation in priority-setting research, collate metrics assessing the effectiveness of social media campaigns, and summarize the benefits and limitations of social media–based research approaches, as well as recommendations for prospective campaigns. MethodsWe searched PubMed, Embase, Cochrane Library, Scopus, and Web of Science from database inception until September 2021. Two reviewers independently screened all titles and abstracts, as well as full texts for studies that implemented and evaluated social media strategies aimed at engaging knowledge users in research priority setting. We subsequently conducted a thematic analysis to aggregate study data by related codes and themes. ResultsA total of 23 papers reporting on 22 unique studies were included. These studies used Facebook, Twitter, Reddit, websites, video-calling platforms, emails, blogs, e-newsletters, and web-based forums to engage with health research stakeholders. Priority-setting engagement strategies included paid platform–based advertisements, email-embedded survey links, and question-and-answer forums. Dissemination techniques for priority-setting surveys included snowball sampling and the circulation of participation opportunities via internal members’ and external organizations’ social media platforms. Social media campaign effectiveness was directly assessed as number of clicks and impressions on posts, frequency of viewed posts, volume of comments and replies, number of times individuals searched for a campaign page, and number of times a hashtag was used. Campaign effectiveness was indirectly assessed as numbers of priority-setting survey responses and visits to external survey administration sites. Recommendations to enhance engagement included the use of social media group moderators, opportunities for peer-to-peer interaction, and the establishment of a consistent tone and brand. ConclusionsSocial media may increase the speed and reach of priority-setting participation opportunities leading to the development of research agendas informed by patients, family caregivers, clinicians, and researchers. Perceived limitations of the approach include underrepresentation of certain demographic groups and addressing such limitations will enhance the inclusion of diverse research priority opinions in future research agendas.https://www.jmir.org/2022/2/e29821
spellingShingle Surabhi Sivaratnam
Kyobin Hwang
Alyssandra Chee-A-Tow
Lily Ren
Geoffrey Fang
Lindsay Jibb
Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review
Journal of Medical Internet Research
title Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review
title_full Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review
title_fullStr Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review
title_full_unstemmed Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review
title_short Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review
title_sort using social media to engage knowledge users in health research priority setting scoping review
url https://www.jmir.org/2022/2/e29821
work_keys_str_mv AT surabhisivaratnam usingsocialmediatoengageknowledgeusersinhealthresearchprioritysettingscopingreview
AT kyobinhwang usingsocialmediatoengageknowledgeusersinhealthresearchprioritysettingscopingreview
AT alyssandracheeatow usingsocialmediatoengageknowledgeusersinhealthresearchprioritysettingscopingreview
AT lilyren usingsocialmediatoengageknowledgeusersinhealthresearchprioritysettingscopingreview
AT geoffreyfang usingsocialmediatoengageknowledgeusersinhealthresearchprioritysettingscopingreview
AT lindsayjibb usingsocialmediatoengageknowledgeusersinhealthresearchprioritysettingscopingreview