Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review
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JOURNAL OF MEDICAL INTERNET RESEARCH Sivaratnam et al
Review
Using Social Media to Engage Knowledge Users in Health
Research Priority Setting: Scoping Review
Surabhi Sivaratnam1,2, BHSc; Kyobin Hwang2,3; Alyssandra Chee-A-Tow4, MPH; Lily Ren5, MI; Geoffrey Fang6;
Lindsay Jibb2,7, RN, PhD
1
Michael G Degroote School of Medicine, McMaster University, Hamilton, ON, Canada
2
Child Health Evaluative Sciences, Hospital for Sick Children, Toronto, ON, Canada
3
Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada
4
Faculty of Dentistry, University of Toronto, Toronto, ON, Canada
5
Lane Medical Library, Stanford University, Stanford, CA, United States
6
Faculty of Applied Science and Engineering, University of Toronto, Toronto, ON, Canada
7
Lawrence S Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada
Corresponding Author:
Lindsay Jibb, RN, PhD
Child Health Evaluative Sciences
Hospital for Sick Children
686 Bay Street
Toronto, ON
Canada
Phone: 1 416 813 7654 ext 309160
Email: lindsay.jibb@sickkids.ca
Abstract
Background: The 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.
Objective: This 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.
Methods: We 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.
Results: A 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.
Conclusions: Social 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.
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(J Med Internet Res 2022;24(2):e29821) doi: 10.2196/29821
KEYWORDS
social media; research priority-setting; knowledge user; scoping review
3. From the perspectives of those conducting social
Introduction media–based research priority-setting campaigns, what are
Background the benefits and limitations of the method, as well as
recommendations for future campaigns?
The need to meaningfully engage individuals with lived
experience (ie, patients, family members, caregivers, clinicians, Methods
researchers, and other advocates; henceforth referred to as
knowledge users) in the conduct of health research—defined Overview
as research that includes clinical and basic medical sciences,
An internal protocol was developed for this review. Our
such as care-based research, systems research, and preventative
reporting process was conducted in accordance with the
research—is being increasingly recognized by the scientific
PRISMA-ScR (Preferred Reporting Items for Systematic
community. In particular, it is recognized that these individuals
Reviews and Meta-Analyses extension for scoping reviews)
should be included at the onset of the research process, with the
guidelines [8].
aim of developing research that meets the needs of individuals
with lived experiences [1]. In fact, the lack of involvement of Search Strategy and Selection of Studies
these individuals in such research priority setting has been A comprehensive search strategy was developed in consultation
identified as a key contributor to difficulties in effectively with a tertiary hospital librarian (LR). We conducted tailored
translating research findings into clinical practice and policy searches in PubMed, Embase, Cochrane Library, Scopus, and
[2]. Web of Science. We searched all databases from their inception
In parallel, the use of social media—defined as any web-based to September 14, 2021. Multimedia Appendix 1 shows the
platform or mobile app through which users can engage with search strategy. Intradatabase and interdatabase duplicates were
others—is gaining considerable traction within the research removed electronically. Using Covidence (Veritas Health
community, as researchers increasingly access Facebook, Innovation), titles and abstracts were screened independently
Twitter, and YouTube to support participant recruitment and by 2 trained authors (KH and SS) according to our eligibility
other research activities [3]. The benefits of research-related criteria. In cases of conflicting opinions on eligibility, studies
social media use include enhanced connectivity between were moved to full-text screening. Full-text articles were then
researchers and participants and the potential for rapid diffusion screened independently by 2 authors (KH and SS). Any
of scientific knowledge to target audiences [4]. The nature of eligibility disagreements were resolved by consensus through
web-based survey methods may also enhance anonymity for discussion by at least three authors (AC, KH, SS, and LJ). The
participants within the research process, potentially promoting reference lists of relevant studies were also scanned to find other
the collection of more valid data [5]. Particularly, data collected applicable papers.
via the web may be less vulnerable to contextual biases that can
Selection Criteria
arise in focus group settings or when researchers administer
surveys in-person [5]. We included studies (1) that discussed strategies to promote
social media–based health research priority setting among key
In light of such potential benefits, a growing body of literature stakeholders and knowledge users and (2) measured the
describing the use of social media to elicit and prioritize research effectiveness of such strategies directly or indirectly. There
uncertainties from knowledge users is emerging [6]. However, were no restrictions on the language, country, and year of
there remains sparse methodological guidance on how best to publication, nor the research content focus, as priority-setting
conduct social media efforts and their corresponding research is cross-disciplinary. Although no explicit restrictions
effectiveness in developing knowledge user–built research were placed on the language, the included studies were
agendas [7]. dominated by English language–based social media campaigns.
Objective and Research Questions We defined social media as any web-based platform or mobile
app through which users can interact and engage with others.
Through this knowledge user–driven scoping review, we aim We defined knowledge users as patients (or potential patients),
to identify studies that implemented and evaluated social media caregivers, clinicians, and other advocates (eg, health
campaigns that promote participation in setting priorities for researchers). We excluded (1) studies where the purpose of the
health research to address three overarching research questions: social media campaign did not include knowledge user
1. What social media–based strategies have been used to engagement (eg, social campaigns used to disseminate smoking
enhance knowledge user participation in health research cessation information to knowledge users) [9]; (2) studies where
priority setting? the research prioritization campaign did not involve social media
2. What metrics (direct and indirect) have been used to assess (dissemination techniques solely involved telephone calls, flyer
the effectiveness of these social media campaigns in distribution, etc); and (3) abstracts, dissertations, protocols,
securing knowledge user participation? systematic reviews, scoping reviews, or case studies.
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Data Extraction and Management review. The number of published studies increased steadily over
A standard electronic data collection form was created and time until 2020, which was the last complete publication year
piloted with our group, after which data extraction occurred (Figure 2).
independently (KH and SS). Discrepancies between the collected Included studies were conducted in 46 countries, most
data were resolved through discussion with 3 authors (LJ, SS, commonly in the United States (11/23, 48%), the United
and KH). Kingdom (7/23, 30%), and Canada (5/23, 22%). Studies
described participation by 13,640 individuals (median 332;
Data Analyses
range 31-4601), with sample size data missing from 4% (1/23)
We used descriptive statistics to summarize quantitative study of the studies. Across studies, the median percentage of female
data and an inductive thematic analysis to synthesize qualitative participants was 77.28% (7404/9581). Sex data were missing
data [10]. Our data collection form was uploaded to NVivo from 52% (12/23) of the studies. Age data were variably
(version 12.6.0; QSR International) for analysis and was read reported and missing from 57% (13/23) of the studies; therefore,
through multiple times by 2 authors (KH and SS) who had data were not collated. Sex data were missing from 39% (9/23)
previous experience with thematic analyses. One author (SS) of the studies. Included studies used a variety of social media
then coded qualitative text within the table on a platforms to gather research priorities, including websites,
segment-by-segment basis. At frequent meetings, a second emails, Facebook, Twitter, e-newsletters, web-based flyers,
author (KH) reviewed the coding decisions using a constant Survey Monkey, ExpertLens, blogs, YouTube, Choicebook,
comparative approach adapted from Thorne [11]. As a group, Instagram, WhatsApp, Snapchat, and web-based forums. The
we (KH, SS, and LJ) then collapsed these codes into subthemes most common platforms used in the included studies were
and themes based on the between-code relationships and in websites (12/23, 52%) and Facebook (9/23, 39%). The median
accordance with our research questions. length of a study’s social media campaign, when reported, was
3.5 months (range 1-24 months). Table 1 summarizes the
Results characteristics of the included studies.
Overview
Figure 1 outlines our study identification process. Overall, 23
papers reporting on 22 unique studies were included in this
Figure 1. Study screening flowchart.
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Figure 2. Social media–based research prioritization publication trend.
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Table 1. Study characteristics (N=23).
Study Year; Sam- Age and Social Social media Purpose for Duration of Social Social Survey re- Outcomes of
country ple, N sex media target group social media social me- media media an- sponse rate campaign in
platform use dia use outreach alytics terms of re-
(eg, (out- search-priority
emails comes) gathering
sent and
posts
made)
Allsop 2019; 51 Not stat- Website Members of To identify May to Au- 101 orga- Not stat- 51 (100%) Research prior-
et al 32 coun- ed and the African (1) current gust 2016 nizations ed survey re- ities success-
[12] tries emails Palliative mobile (4 months) were sponses fully identi-
within Care Associ- health use in emailed (50.5% re- fied
Africa ation and in- palliative with web- sponse
dividuals care, (2) po- based sur- rate)
who work in tential barri- vey links
palliative ers to use,
care and (3) prior-
ities for re-
search devel-
opment
Cor- 2020; 365 Not stat- Website, Patients and To identify November 19,176 Not stat- 441 survey Research prior-
rell et United ed emails, caregivers of what re- 2016, Jan- emails ed responses ities success-
al [13] States and other children (age search topics uary 2017, were sent fully identi-
≥13 years) were most and March fied
important to 2017 for
patients and JM, AFd,
caregivers of
and LFAe,
children with
respective-
JMa, JAb, ly (5
and cSLEc months)
Dyson 2017; 110 Median Website, Caregivers To identify December Creation Website 110 Research prior-
et al Canada age 35 Face- of children the outcome 2013 to of web- visits (100%) ities success-
[14] and Por- years; book, and aged 0-17 priorities of March site, Face- (5207); survey re- fully identi-
tugal 90% Twitter years parents of 2014 (4 book, and 3.9% spondents fied
(99/110) children who months) Twitter view rate
women, had experi- page or
10% enced an posts
(11/110) acute respira- with em-
men tory infec- bedded
tion survey
links
Dyson 2017; 110 Median Website, Caregivers To identify December Creation Survey 110 Research prior-
et al Canada age 35 Face- of children the outcome 2013 to of web- site visits (100%) ities success-
[15] and Por- years; book, and aged 0-17 priorities of March site, Face- (5027); survey re- fully identi-
tugal 90% Twitter years parents of 2014 (4 book, and Facebook spondents fied
(99/110) children who months) Twitter page likes
women, had experi- page or (104);
10% enced an posts and Twit-
(11/110) acute respira- with em- ter follow-
men tory infec- bedded ing (52
tion survey new fol-
links lowers)
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Study Year; Sam- Age and Social Social media Purpose for Duration of Social Social Survey re- Outcomes of
country ple, N sex media target group social media social me- media media an- sponse rate campaign in
platform use dia use outreach alytics terms of re-
(eg, (out- search-priority
emails comes) gathering
sent and
posts
made)
Eber- 2019; 4601; Age not Newslet- Athletic To identify January 30, 48,752 Started 4514 Research prior-
man et United 87 stated; ters via trainers research pri- 2017 to emails the sur- (100%) re- ities success-
al [16] States (1.89%) 55.05% email orities and March 16, were sent vey search par- fully identi-
for fo- (2533/4601) unify re- 2017 (2 (5131, ticipants fied
cus women, search with months) 10.5%); (9.3% re-
groups, 43.40% clinical prac- agreed to sponse
4514 (1997/4601) tice to im- partici- rate)
(98.11%) men, and prove patient pate
for sur- 0.61% care and ad- (4514,
vey (28/4601) vance the 9.3%);
no indica- profession and com-
tion pleted the
question-
naire
(3910,
86.6%)
Han et 2019; 332 Median Newslet- Females To identify November 904 web- Survey 332 Identified high
al [17] United age 51 ters via aged ≥18 diabetes type 2016 to site posts link (100%) re- priority re-
States years; web, web- years 1 or 2 or pre- June 2017 clicks search par- search areas
100% site, Face- diabetes (8 months) (421); ticipants for women liv-
(332/332) book, health re- com- ing with dia-
women Twitter, search priori- ments on betes
web- ties posts
based fly- (904); to-
ers, and tal likes
emails (530); to-
tal search-
es (167);
and re-
source
download
(671)
Han et 2017; 332 Median Newslet- Females To identify Not stated 551 Tag 332 The re-
al [18] United age 49 ters via aged ≥18 diabetes type emails clicks (100%) searchers
States years; web, web- years 1 or 2 or pre- were sent (497); re- survey re- identified 11
100% site, Face- diabetes posts and spondents high priority
(332/332) book, health re- com- (84% re- categories of
women Twitter, search priori- ments sponse topics that
web- ties (872); rate) were dis-
based fly- voted for cussed on the
ers, and posts DiabetesSis-
emails (540); tersVoices
searched community
for re-
sources
(167);
and
download-
ed re-
sources
(671)
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Study Year; Sam- Age and Social Social media Purpose for Duration of Social Social Survey re- Outcomes of
country ple, N sex media target group social media social me- media media an- sponse rate campaign in
platform use dia use outreach alytics terms of re-
(eg, (out- search-priority
emails comes) gathering
sent and
posts
made)
Healy 2018; 790 Age not Website, People invit- To identify July 2016 Not stat- Not stat- 790 List of top 10
et al United stated; emails, ed to partici- priority re- to August ed ed (100%) re- trial recruit-
[19] King- 71% and Twit- pate in a ran- search ques- 2016 (1 spondents ment uncer-
dom (561/790) ter domized trial tions related month) tainties, deter-
and Ire- women, or participat- to trial re- mined by
land 28.98% ed in Trial cruitment those directly
(229/790) Steering involved in tri-
men Committees, als, were iden-
front line tified
randomized
trials staff
and investiga-
tors, and
people famil-
iar with trial
methodology
Kim et 2018; 360 Age not Ex- Patient, pa- To deter- 18 months Not stat- Not stat- 84% re- Research prior-
al [20] United stated; pertLens tient advo- mine engage- ed ed sponse rate ity successful-
States 60% (ie, ex- cate, clini- ment of ly identified
(216/360) pert opin- cian, and re- stakeholders
women, ion fo- searcher in research
40% rums), stakeholders related to
(144/360) emails, heart failure,
men and other obesity, and
Kawasaki
disease
Kriss 2019; 207 Not stat- Email Experts in To identify October 17 774 Not stat- 207 Four main re-
et al United ed global, re- research pri- to Novem- emails ed (100%) re- search priori-
[21] States gional, and orities for ber 4, 2016 were sent spondents ties within the
national or achieving (approxi- field of
subnational disease elimi- mately 1 measles and
health nation goals month) rubella
in the con-
text of
measles and
rubella
Morris 2015; 475 Not stat- Website, Children To identify Not stated Creation Not stat- 369 respon- Successfully
et al United ed newslet- with neu- and priori- of web- ed dents (78% established
[22] King- ters, and rodisability, tize research site and response top 3 research
dom emails caregivers, questions re- emails rate) priorities
with em- and clini- garding were sent
bedded cians ways to im- with em-
links prove the bedded
health and links
well-being
of children
and young
people with
neurodisabil-
ity
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Study Year; Sam- Age and Social Social media Purpose for Duration of Social Social Survey re- Outcomes of
country ple, N sex media target group social media social me- media media an- sponse rate campaign in
platform use dia use outreach alytics terms of re-
(eg, (out- search-priority
emails comes) gathering
sent and
posts
made)
Morse 2021; 31 Mean age Email Parents of To (1) ascer- August Posting Social Not stated Established re-
et al United 15 years; and social children with tain parents’ 2018 to institu- media search priori-
[23] States 55% media medical perceived February tional re- post ties
(17/31) platforms complexity characteris- 2019 (6 view shares
women, (not speci- tics of child months) board–ap- (n=30)
45% fied) pain experi- proved
(14/31) ences, (2) message
men determine on prima-
the extent to ry investi-
which par- gator’s
ents feel that social me-
caregivers dia page
adequately
address pain,
and (3) iden-
tify ways in
which pain
collaboration
between par-
ents and
caregivers
may be im-
proved
Nor- 2015; 57 Not stat- Survey Patients, To identify August 6 to Not stat- “Ob- Not stated Developed a
mansell United ed Monkey, caregivers, research pri- September ed tained a list of priority
et al King- Face- and health orities in 5, 2014 (1 large Cochrane Re-
[5] dom book, care profes- asthma month) number views
Twitter, sionals with of re-
website, expertise in sponses
and other this disci- in a short
pline timeperi-
od with
potential-
ly wide
geographi-
cal reach”
Oe- 2020; 363 Not stat- What- OGAAf To prioritize September Posted on Not stat- Not stated Established re-
sopha- United ed sApp and committee, future re- to Novem- organiza- ed search priori-
go- King- email national search areas ber 2019 (3 tions’ so- ties
Gas- dom leaders, and of unmet months) cial me-
tric engaged clinical need dia ac-
Anas- clinicians in RCTsg to counts
tomo- from high-, reduce anas-
sis low-, and tomotic
Study middle-in- leaks
Group come coun-
[24] tries
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Study Year; Sam- Age and Social Social media Purpose for Duration of Social Social Survey re- Outcomes of
country ple, N sex media target group social media social me- media media an- sponse rate campaign in
platform use dia use outreach alytics terms of re-
(eg, (out- search-priority
emails comes) gathering
sent and
posts
made)
Row- 2019; 482 Not stat- Twitter Patients, To identify March 320 Twitter Not stated Top 10 list for
both- world- ed their care- research pri- 2016 to tweets followers research in
am et wide givers, and orities for January gained CFh was estab-
al [25] clinicians cystic fibro- 2017 (10 (n=732); lished
sis months) total num-
ber of
views
(n=151,000);
engage-
ments
with hash-
tag
(n=1806);
and fol-
lowers
(n=1160)
Rus- 2016; 96 Not stat- Facebook Family To exchange June 2014 432 Face- 96 Face- 49 respon- Provided re-
sell et Canada ed members of knowledge to March book book dents (51% searchers with
al [26] children on project 2015 (10 posts members; response an opportunity
planning and months) were pub- posts rate) to consult
research di- lished were gen- families of
rection and erally children with
translate re- seen by special needs
search all group to receive
knowledge members; guidance and
on disabili- median hear issues
ties and med- likes that are impor-
ical complex- (n=3); tant to them.
ity and com- Research prior-
ments ities not identi-
(n=4) fied
Salmi 2020; 36 Not stat- Twitter, Patients with To describe April 2018 Two 60- 417 N/Ai Research prior-
et al United ed emails, brain tumor the use of (1 month) minute tweets by ities, in the
[27] States blog and their Twitter to scheduled partici- form of quali-
posts, and care partners complement live chat pants in tative themes,
Facebook (ie, family in-person on Twit- first ses- were success-
groups members stakeholder ter sion and fully identi-
and friends engagement 355 fied
who care for and report tweets by
patients) emerging partici-
themes from pants in
qualitative second
analysis of session
tweet chats
on quality of
life needs
and pallia-
tive care op-
portunities
for patients
with brain
tumor
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Study Year; Sam- Age and Social Social media Purpose for Duration of Social Social Survey re- Outcomes of
country ple, N sex media target group social media social me- media media an- sponse rate campaign in
platform use dia use outreach alytics terms of re-
(eg, (out- search-priority
emails comes) gathering
sent and
posts
made)
Shal- 2020; 300 Not stat- Blogs and Patients and To under- January Not stat- Facebook Not stated Optimal
hub et United ed website their care- stand patient 2018 and ed members modality for
al [28] States, givers needs and April 2018 in secret research partic-
United determine (2 months) group ipation and
King- the research (n=363) methodologies
dom, methods best and Face- for building
and suited to book fol- trust in the re-
Canada study the ad- lowers search teams
verse health (n=80,573) were identi-
implications fied
associated
with vascu-
lar Ehlers-
Danlos syn-
drome
Shields 2010; >800 Not stat- Choice- Residents of To engage Not stated YouTube “Hits” on Not stated Findings iden-
et al Canada ed book, and health the disperse video website tified new or
[29] message service population welcome platform additional re-
board, providers in of northwest- message; (n=2500); search priori-
blog, northwestern ern Ontario weekly website ties for health
YouTube, Ontario in health blogs; views network
Face- care priority and week- (n=2000);
book, and setting ly partici- and >800
email pation up- partici-
date re- pants
ports
Siefried 2021; 47 Mean age Newslet- Consumers, To identify February Newslet- Not stat- Not stated Research
et al Aus- 42 years; ter, family, clinical re- 2019 to ter with ed themes and
[30] tralia 45% emails friends, care- search priori- March embed- priorities were
(21/47) with em- givers, clini- ties for 2019 (1 ded link successfully
women, bedded cians, re- metham- month) were sent identified
45% links, searchers, phetamine to mail-
(21/47) Twitter, policymak- and emerg- ing list
men, and and web- ers, industry, ing drugs of and recipi-
5% (2/47) site research fun- concern in ents of
other or ders, institu- Australia, to emails
preferred tions, organi- guide the were invit-
not to say zations, law work of the ed to for-
enforcement, National ward the
border con- Centre for email to
trol, and oth- Clinical Re- other in-
er communi- search on terested
ty members Emerging parties
interested in Drugs
the topic of
metham-
phetamine
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Study Year; Sam- Age and Social Social media Purpose for Duration of Social Social Survey re- Outcomes of
country ple, N sex media target group social media social me- media media an- sponse rate campaign in
platform use dia use outreach alytics terms of re-
(eg, (out- search-priority
emails comes) gathering
sent and
posts
made)
Sin- 2019; 80 Mean age ConnectE- Parents of To identify Approxi- 105 par- 92% 54 (68%) Top 10 list of
clair et Croatia, 38 years; people (e- children with the research mately 2 ents were (74/80) of respon- research prior-
al [31] France, 94% forum), illness priorities of months invited to partici- dents ities were suc-
Ger- (75/80) Face- parents of secret pants ac- (51.4% re- cessfully iden-
many, women, book, children with Facebook cessed sponse tified
Italy, 6% (5/80) YouTube, Down syn- group the sur- rate)
the men Twitter, drome, cleft vey
Nether- What- lip or cleft through
lands, sApp, palate, con- social me-
Poland, Snapchat, genital heart dia and
Portu- and Insta- defects, or Facebook
gal, gram spina bifida members
Spain, (32)
and the
United
King-
dom
Sylvia 2018; 4103 Age Website Patients, To under- May 2015 Not stat- 4103 Not stated Research prior-
et al United range be- and web- caregivers, stand re- to May ed (100%) ity agenda in
[32] States tween 18 based fo- clinicians, search topics 2017 (24 users en- the area of
and 86 rums and other ad- that are of months) rolled in- mood disor-
years; vocates most interest to the ders were suc-
78.21% to individu- web- cessfully iden-
(3209/4103) als with based tified
women, mood disor- communi-
19.01% ders ty (via
(780/4103) the web-
men site)
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Study Year; Sam- Age and Social Social media Purpose for Duration of Social Social Survey re- Outcomes of
country ple, N sex media target group social media social me- media media an- sponse rate campaign in
platform use dia use outreach alytics terms of re-
(eg, (out- search-priority
emails comes) gathering
sent and
posts
made)
Woj- 2019; 79 Not stat- Emails Individuals To identify June 2018 124 email Not stat- 79 (100%) Five priority
cieszek Aus- ed with em- involved in research pri- to August invita- ed respon- research top-
et al tralia, bedded stillbirth re- orities and 2018 (1.5 tions dents (64% ics were suc-
[33] New link search, clini- explore po- months) were sent survey re- cessfully iden-
Zealand, cal practice, tential sponse tified
Africa, and advoca- methodolo- rate)
Asia, cy gies to in-
Europe, form care in
North subsequent
Ameri- pregnancies
ca, following a
South or stillbirth
Central
Ameri-
ca, the
United
King-
dom,
and Ire-
land
a
JM: juvenile myositis.
b
JA: juvenile arthritis.
c
cSLE: childhood-onset systemic lupus erythematosus.
d
AF: Arthritis Foundation.
e
LFA: Lupus Foundation of America.
f
OGAA: oesophago-gastric anastomosis audit.
g
RCT: randomized controlled trial.
h
CF: cystic fibrosis.
i
N/A: not applicable.
during a set period, to which Twitter users respond via tweets
Research Question 1: Social Media–Based Strategies and engage in discussions with each other. A web-based forum
Used strategy led to the creation of a space where families and
Table 2 shows the particular social media strategies used to researchers could share ideas on the priority-setting research
enhance knowledge user engagement in research priority-setting project [31]. Informational videos were created and hosted on
exercises grouped by platform. Of studies using email as their YouTube for people potentially interested in contributing
primary social media platform [12,16,17,19,23,24,27,29,30,33] research priorities and were later posted on other platforms
study teams emailed messages with embedded research [28,29]. For studies involving blogs, researchers posted stories
prioritization survey links (including to researchers’ existing and internal updates related to the project to enhance interest
mailing lists) and integrated tell a friend tool in emails to prompt in participation [28,29]. Studies also distributed e-newsletters
recipients to invite colleagues to participate. Facebook-specific to existing networks, sending them monthly to promote
methods to engage stakeholders included embedding survey participation [16-18,28,30]. In addition, several studies used
links within Facebook posts, using the platform’s boosting posts on Reddit and websites and web-based connection with
feature (ie, paid advertisements), and hiring a Facebook the research team through video-calling platforms (eg, Skype,
advertising specialist. Informational Facebook pages were also WhatsApp, or FaceTime or video chat on Facebook Messenger)
used and involved private and public question-and-answer pages to promote participation in priority-setting research [22,28,32].
and a resource center with links to relevant documents
Table 3 summarizes techniques to disseminate actual web-based
[5,17,14-18].
research priority-setting surveys through social media. Snowball
Twitter-specific methods to engage participation included the recruitment, in which current participants’ friends and family
use of hashtags within tweets and question-and-answer threads were approached for participation, was used [14,15,29,30].
for prospective participants [5,14,15,17-19,25,31]. In addition, Study teams also provided partner organizations with toolkits,
Salmi et al [27], hosted live chats on Twitter, in which host templates, and promotional materials [5,12,13,15,17,23,29].
Twitter accounts tweet about predefined topics with questions Then, organizations could use these materials to support the
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broadcasting of participation opportunities through social media. the participation opportunity to their networks via social media
Individuals embedded in research prioritization exercises, such [12-16,19,23,30], including by providing such individuals with
as steering group members, were additionally asked to promote preworded statements to tweet [19].
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Table 2. Social media platform strategies.
Social media platform and specific strategy Strategy description Representative quotes Studies provid-
ing evidence
Blogs
Blog post stories Posting insightful stories related to • “Weekly blogs by the Shields et al
the priority-setting research project chief executive officer [29]
with the goal of promoting participa- profiling stories that are
tion particularly moving or in-
sightful, as well as internal
news on the project.”
Project news posting Posting internal news or updates relat- • “Some organisations or Dyson et al [14]
ed to the priority-setting research individuals promoted the
project study on Twitter or a
blog.”
Emails
Embedded links Embedding survey links within emails • “Invitations to participate Allsop et al
to promote participation in the priori- in the research and a link [12], Correll et
ty-setting research project to the online survey (in the al [13]; Han et
relevant language) were al [18], Kriss et
sent via email. Those ap- al [21], Siefried
proached to complete the et al [30], and
survey were identified us- Wojcieszek et
ing membership lists of al [33]
the African Palliative Care
Association (APCA).”
Mailing list distribution The use of an existing mailing list to • “A link to an initial elec- Allsop et al
promote participation in the priority- tronic survey (created us- [12], Correll et
setting research project ing REDCap) was emailed al [13], Han et
to members of Cure JMa, al [17], Siefried
et al [30], and
AFb and LFAc patient and
Wojcieszek et
family members and post-
al [33]
ed on their respective so-
cial media sites. The rank-
ing survey was emailed to
the Cure JM, AF, and
LFA listservs and a link
was posted on their respec-
tive social media sites.”
Peer-to-peer dissemination Using a tell a friend tool, which in- • “Tell a Friend tool to in- Shields et al
vites friends and colleagues to partic- vite friends or colleagues [29]
ipate (peer-to-peer messaging) in the to participate, using e-
priority-setting research project mail-based peer-to-peer
messaging.”
Reminders to participate Sending email reminders to individu- “We sent an initial e-mail on Eberman et al
als about the opportunity to partici- Tuesday, January 30, 2017, at [16], Han et al
pate in the priority-setting research 12:00 PM EST to potential [17], Kriss et al
project participants and, on subsequent [21], and Woj-
Tuesdays between 10:00 AM cieszek et al
and 12:00 PM EST, sent 5 [33]
weekly reminders to those who
had not yet responded.”
Reminders to finish survey Sending email reminders to individu- • “Reminder emails were Kriss et al [21]
als who began the survey but only sent to non-responders and and Wojcieszek
partially completed it to individuals who began et al [33]
the survey but only partial-
ly completed it.”
Facebook
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Social media platform and specific strategy Strategy description Representative quotes Studies provid-
ing evidence
Embedded links to create Embedding simple and direct links • “Simple ‘How to Partici- Normansell et
ease of participation within Facebook posts to external pate’ area that provided a al [5] and
sites related to participation in the visual menu of the ways Shields et al
priority-setting research project to get involved, with sim- [29]
ple links to take partici-
pants directly to the tools.
Resource Centre page
with access to links, docu-
ments and reports to help
participants deepen their
knowledge of the techni-
cal health challenges in
the region.”
Engagement of advertising Hiring a Facebook advertising strate- • “Tactica Interactive, a Dyson et al [15]
strategists gist to plan the social media campaign digital media enterprise,
used for promoting participation in was hired to broaden our
the priority-setting research project sampling frame via a
Facebook advertising
strategy.”
Providing participation ex- Creating a Facebook section that ex- • “Simple ‘How to Partici- Dyson et al [15]
planation plains how to participate in the prior- pate’ area that provided a
ity-setting research project visual menu of the ways
to get involved, with sim-
ple links to take partici-
pants directly to the
tools.”
Use of private and public Creating both public and private “Announcement of the vEDSd Dyson et al,
pages Facebook groups to allow private Collaborative survey was dis- [14], Shalhub et
discussion among participants in the seminated via vEDS public and al [28], and Sin-
priority-setting research project private social media pages.” clair et al [31]
• “Secret Facebook groups,
providing optimal securi-
ty, were set up for newly
recruited research-aware
parents (RAPs) to commu-
nicate privately and confi-
dentially with each other
and for the research team
to generate questions and
to interpret findings.”
Providing project explana- Creating a section on Facebook page • “‘About our Project’ sec- Shields et al
tion dedicated to explaining the priority- tion to provide partici- [29]
setting research project and how par- pants with specific details
ticipation could have an impact on how their participation
would affect the North
West LHINe decision-
making and the second
IHSPf.”
Question and answer Using and moderating a web-based • “To encourage engage- Han et al [17]
question-and-answer thread on Face- ment and re-engagement, and Sinclair et
book to promote discussion topics the site moderator used al [31]
regarding research participation online question and an-
swer threads to keep pro-
moting new discussion
topics and emailed a
weekly topic to all the
registered users to encour-
age them to come back.”
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Social media platform and specific strategy Strategy description Representative quotes Studies provid-
ing evidence
Resource center Creating a resource center with links • “‘Resource Centre’ page Shields et al
to documents and reports on the with access to links, docu- [29]
Facebook page ments and reports to help
participants deepen their
knowledge of the techni-
cal health challenges in
the region.”
Private and secret groups Creating private Facebook groups to • “Announcement of the Shalhub et al
allow private discussion among partic- vEDS Collaborative sur- [28] and Sin-
ipants in the priority-setting research vey was disseminated via clair et al [31]
project vEDS public and private
social media pages”
Newsletter
Distribution through the re- Distributing newsletter to an existing • “To increase our reach and Han et al [18],
searcher’s existing network network to promote participation in the likelihood of participa- Eberman et al
the priority-setting research project tion, the NATAg market- [16], and
ing team distributed our Siefried et al
recruitment announcement [30]
and link to volunteers via
the ‘‘Range of Motion’’
newsletter to all registered
attendees 5 and 6 weeks
before the conference.”
Frequent promotion Sending monthly newsletters to pro- • “Social media promotion Han et al [18]
mote participation in the priority-set- through Facebook and and Han et al
ting research project Twitter and monthly elec- [17]
tronic newsletters from
DiabetesSisters.”
Web-based Idea sharing Creating forums through which fami- • “Moderated online group Russell et al
forums lies and researchers could share their where families and re- [26]
ideas related to the priority-setting searchers can share ideas
research project related to research.”
Reddit Posting of promotional mate- The use of Reddit as a social media • “Announcement of the Shalhub et al
rial platform used to promote participa- vEDS Collaborative sur- [28]
tion in the priority-setting research vey was disseminated via
project vEDS public and private
social media pages.”
Twitter
Hashtags Using Twitter hashtags to attract par- • “A bespoke Twitter ac- Rowbotham et
ticipants and generate conversation count was set up @ques- al [25]
among relevant stakeholders tionCF with the associated
hashtag #questionCF. This
was managed by members
of the steering group and
aimed to promote the on-
line surveys and increase
participation.”
Question and answer Creating a post for inviting partici- “A bespoke Twitter account Rowbotham et
pants to ask questions about the prior- was set up @questionCF with al [25]
ity-setting research project, which the associated hashtag #ques-
was moderated by steering group tionCF. This was managed by
members members of the steering group
and aimed to promote the on-
line surveys and increase partic-
ipation.”
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Social media platform and specific strategy Strategy description Representative quotes Studies provid-
ing evidence
Live chats Host Twitter accounts tweeting about • “The tweet chat hosts Salmi et al [27]
predefined topics with questions over (@BTSMchat and
a set period, during a scheduled chat, @HPMchat, respectively)
to which Twitter users respond via tweeted the 4 predefined
tweets and engage in discussions with topics (Table 1) with
each other. Tweets from participants questions over a 60-
are limited to 280 characters and par- minute period during a
ticipants typically include an assigned scheduled chat. The hosts
hashtag in their tweet, thus allowing alerted tweet chat partici-
aggregation of the conversation. pants that the transcript of
the chat would be subject
to qualitative analysis and
used to inform research.
One tweet question was
posted roughly every 15
minutes. Twitter users re-
sponded to the questions
and engaged in discus-
sions with each other. On
Twitter, responses are
limited to 280 characters,
and participants were in-
structed to add the
#BTSM or #HPM hashtag
to aggregate the conversa-
tion.”
YouTube Welcome video Using YouTube to create a personal • “On the site’s home page, Shields et al
welcome message on Facebook YouTube video personal [29] and Shal-
pages, inviting users to participate in welcome message.” hub et al [28]
the priority-setting research project
Website Posting of promotional mate- Discussing the use of websites with • “We created an online and Allsop et al
rial survey as a social media platform social media presence via [12], Dyson et
used to promote participation in the a study website (Out- al, Normansell
priority-setting research project comes in Child Health)...” et al [5], and
• “We collaborated with or- Sylvia et al [32]
ganisations interested in
ARIh and patient engage-
ment to advertise our re-
search via websites and
other channels...”
Video call- Digital connection to pro- Discussing the use of video-calling • “Discussed details about Sinclair et al
ing mote participation or internet-based face-to-face interac- the project and the par- [31]
tions to promote participation in the ents’ research needs
priority-setting research project through face-to-face social
media platforms such as
Skype, WhatsApp, Face-
Time, or via video chat on
Facebook Messenger to
build trust.”
a
JM: juvenile myositis.
b
AF: Arthritis Foundation.
c
LFA: Lupus Foundation of America.
d
vEDS: vascular Ehlers-Danlos syndrome.
e
LHIN: local health integration network.
f
IHSP: integrated health services plan.
g
NATA: National Athletic Trainers’ Association.
h
ARI: acute respiratory infection.
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Table 3. Dissemination techniques.
Category and specific technique Technique description Representative quotes Studies providing
evidence
Existing network
Individual promo- Using individuals (eg, steering • “Those approached to complete the survey were Allsop et al [12],
tion group members) within existing identified using membership lists of the African Correll et al [13],
network to promote the survey Palliative Care Association (APCA).” Dyson et al, [14],
to their networks via social • “A link to an initial electronic survey (created Eberman et al [16],
media using REDCap) was emailed to members of Cure Healy et al [19],
JM, AF and LFA patient and family listservs and Rowbotham et al
posted on their respective social media sites.” [25], and Siefried
• “We also asked individuals and organisations et al [30]
within our existing networks to promote the
study.”
• “All Steering Group members were requested to
use pre-worded Tweets, which included the link
to the survey.”
• “Invitations to participate in the research and a
link to the online survey (in the relevant language)
were sent via email. Those approached to com-
plete the survey were identified using membership
lists of the African Palliative Care Association
(APCA).”
Individual promo- Providing individuals (eg, • “All Steering Group members were requested to Dyson et al [15];
tion–prewording steering group members) within use pre-worded Tweets, which included the link Healy et al [19],
existing network with preword- to the survey.” Rowbotham et al
ed tweets to promote the re- • “A bespoke Twitter account was set up @ques- [25], and Morse et
search participation opportunity tionCF with the associated hashtag #questionCF. al [23]
on their Twitter accounts This was managed by members of the steering
group and aimed to promote the online surveys
and increase participation.”
External organizations
Social media col- External organizations posting • “A link to an initial electronic survey (created Correll et al [13],
laboration on their respective social media using REDCap) was emailed to members of Cure Dyson et al [14],
sites to promote research partic- JM, AF and LFA patient or family listservs and Han et al [17],
ipation opportunity posted on their respective social media sites. The Normansell et al
a b [5], Siefried et al
ranking survey was emailed to the Cure JM , AF ,
[30], and Oesopha-
and LFAc listservs and a link was posted on their
go-Gastric Anasto-
respective social media sites.”
mosis Study Group
• “Tactica Interactive, a digital media enterprise,
[24]
was hired to broaden our sampling frame via a
Facebook advertising strategy.”
• “We collaborated with organisations interested
in ARId and patient engagement to advertise our
research via websites and other channels...”
• “A toolkit aimed at partnering organizations,
which included a template for the invitation from
the partner, a description of DiabetesSistersVoic-
es, and promotional materials including flyers
and postcards.”
• “A survey consisting of 27 questions was devel-
oped and distributed to surgeons from the OGAAe
collaborative and advertised through specialty
organizations’ social media accounts”
Providing re- Providing external organiza- • “A toolkit aimed at partnering organizations, Han et al [17]
sources tions with toolkits, templates, which included a template for the invitation from
or promotional materials that the partner, a description of DiabetesSistersVoic-
serve as guidelines for when es, and promotional materials including flyers
organization broadcasts re- and postcards.”
search participation opportunity
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Category and specific technique Technique description Representative quotes Studies providing
evidence
Website External organizations posting • “We collaborated with organisations interested Allsop et al [12],
on their website to promote re- in ARI and patient engagement to advertise our Dyson et al [14],
search participation opportunity research via websites and other channels: The and Normansell et
Alberta Centre for Child, Family & Community al [5]
Research (now known as PolicyWise for Children
and Families; a provincial organisation linking
government, academia and the community in a
focus on evidence-informed policy and prac-
tice),22 TRanslating Emergency Knowledge for
Kids (a national network of researchers and clin-
icians invested in improving paediatric emergency
care), 23 the Cochrane Consumer Network (an
international network of healthcare consumers
with an interest in evidence-based medicine) 24
and the Stollery Family Centered Care Network
(a local children’s hospital-based network of pa-
tients and families that provide input into patient
care).”
• “Online survey was posted on Survey Monkey
and advertised through the Asthma UK Facebook
and Twitter profiles and Cochrane Airways social
media and website.”
Snowball recruit- N/Af Disseminating research oppor- • “We used snowball sampling to recruit parents.” Dyson et al [14],
ment tunity to participants’ social • “First, we focused on identifying and engaging Shields et al [29],
networks to increase participa- recruitment targets with the potential for a high and Siefried et al
tion and access to specific pop- yield of participants. We then expanded our scope [30]
ulations through referrals and diffusion via social media.”
• “Through Facebook, friend networks were encour-
aged to invite each other to participate.”
• “Tell a Friend tool to invite friends or colleagues
to participate, using e-mail-based peer-to-peer
messaging.”
Boosts N/A Using the Facebook boosting • “Facebook posts were “boosted” monthly to Han et al [17] and
feature to reach a wider audi- showcase the posts to more users.” Han et al [18]
ence of possible participants • “Social media promotion through Facebook and
Twitter and monthly e-newsletters from Diabetes-
Sisters Facebook posts were boosted to showcase
the posts to more users, centralizing it to female
users in the United States with interests in dia-
betes-relevant topics. DiabetesSisters posted on
Facebook about the study and each month they
“boosted” the post to increase the number of
women who saw each post.”
a
JM: juvenile myositis.
b
AF: Arthitis Foundation.
c
LFA: Lupus Foundation of America.
d
ARI: acute respiratory infection.
e
OGAA: oesophago-gastric anastomosis audit.
f
N/A: not applicable.
(2) number of survey responses within a set period
Research Question 2: Measurement of Social Media [14,15,20,33], (3) proportion of surveys fully completed [21],
Campaign Effectiveness and (4) number of visits to external survey administration sites
Across all the 23 included studies, 21 (91%) claimed to be [14,15].
successful in conducting health research priority-setting
Indirect metrics for campaign effectiveness were (1) audience
exercises via social media–based methods.
reach (ie, extent to which the survey sample was characteristic
The direct effect of social media campaigns in securing of the target population [13-15], number of countries and local
stakeholder participation in research priority-setting was communities represented in the sample [12,21], and number of
assessed as the (1) number of survey responses [12,14,15,20,33], national associations and external organizations contacted [12]);
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(2) campaign interaction (ie, number of clicks and impressions [17,22,26,28,29,31,33]; and using platform-specific boosts (eg,
on posts [14,15,18,23,25,27], frequency of post views [26], Facebook boosts) [18,28]. This last strategy corresponded with
volume of comments left by target stakeholders [26], number the highest recruitment and enrollment yields.
of searches for campaign pages or downloads of resources
Recommendations to address the limitation that social media
[17,18], number of bespoke hashtag clicks or uses [25,27], and
may prevent priority-setting participation by some groups were
Google Analytics [18]); (3) participant satisfaction [17,28,31];
also suggested. These included implementing a hybrid of
and (4) platform-specific methods (ie, number of website views
electronic and nonelectronic survey dissemination methods to
or likes [12,14,15,17-19,21,29], number of registered
increase the representation of those without access to technology
participants in an email chain or total number of delivered emails
[12,17,18], developing web-based materials with simple
[12,13,16,19,21,29,33], new followers and likes on Facebook
navigation requirements to allow participation by individuals
pages [14,15,17,18,26], and Twitter followers gained
with less experience with the web [30], and intentionally
[14,15,25]).
tailoring social media strategies (eg, hashtags and boosts) for
Research Question 3: Benefits, Limitations, and subpopulations of individuals whom study teams identify as
Recommendations being underrepresented in research prioritization project data
sets [13-15,17,21,25,32].
Benefits and Limitations of Social Media–Based
Research Priority Setting Discussion
All included studies (23/23, 100%) successfully gathered
research priorities from key stakeholders and knowledge users Principal Findings
using social media–based participant recruitment. Cited benefits Recognizing the importance of engaging key stakeholders in
related to social media use were the capacity to elicit developing research agendas, we sought to use the extant
participation from many knowledge users [14,15,17,18,27,31], literature to understand how social media might support research
the speed at which research priorities were gathered, the sense priority-setting, how effectiveness of the method might be
of community developed [17,31], peer-support offered to measured, and the method’s benefits and drawbacks. We show
patients and family members [17,26,28,31] by social media that multiple social media strategies, which differ depending
campaigns, and the capacity for dissemination of on the social media platform, have been used to promote
health-promoting resources from health care professionals to participation in research priority setting—with strong success
patients. A cited limitation of social media–based methods was rates in generating research agendas. Metrics to quantify the
that web-only methods may limit the participation of individuals reach of these strategies included the number of impressions
with limited or no access to technology, limited leisure time to on posts (eg, likes and other reactions) and the volume of
engage with social media, and lower socioeconomic status and comments left by stakeholders. In addition to the benefits,
of older age [12-15,17]. limitations of the use of social media in research priority-setting
were also identified. Results from this review can guide methods
Recommendations for Successful Social Media–Based for research priority-setting by patients, family caregivers, health
Research Priority Setting care professionals, and other advocates and support the
To improve the effectiveness of social media campaigns, authors engagement of these stakeholders in developing future research
recommended focusing on the campaign’s graphic design agendas.
components and style of messaging [26,31,32], creating
opportunities for the target audience to personally interact with Social Media Platform Strategies and Dissemination
the team leading the campaign [31], and using platform-specific Techniques
paid advertisements (ie, also termed boosts) [18,28]. Social media–based strategies that incorporated
platform-specific amplification (eg, Facebook boosts) and
Design-related recommendations included implementing
components that encouraged active engagement by participants
illustrative and graphical sophistication, such as posts containing
(eg, question-and-answer forums and shared resources) enabled
words, text, and video [31] and establishing a tone and style of
researchers to reach a broad audience of possible participants.
graphics to create a consistent brand [26,32]. Messaging
This finding agrees with the literature showing that Facebook
recommendations were to post some content that is not directly
[34] health promotion posts receiving a paid boost reached
related to research, but of interest to community
significantly more users. Hashtags were also used in the included
members—especially if these posts are community-led
studies to increase visibility of tweets, which aligns with
[22,26,31]; to avoid phrases that do not foster inclusivity and
previous research showing hashtag use as effective in
may separate the researchers from the target audience (ie, us vs
influencing social media conversations related to mental health
them semantics); and to minimize scientific jargon in posts.
[35] and in cases where the desired participant pool is small
Interaction-related recommendations involved using moderators
[36].
[17,26], especially community members to build the authenticity
of the campaign [27]; initiating conversations with perspective Our finding that snowball sampling is used to disseminate
participants to break the ice; using software that supports priority-setting surveys and expand participant pools aligns with
face-to-face interaction between researchers and the community other research showing that options to like, tag, or share posts
[31]; allowing peer-to-peer sharing (ie, providing community expand a social media campaign’s reach [37]. This method may
members with capacity to invite colleagues to participate) be particularly advantageous in cases where the campaign target
https://www.jmir.org/2022/2/e29821 J Med Internet Res 2022 | vol. 24 | iss. 2 | e29821 | p. 20
(page number not for citation purposes)
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