SYSTEMATIC REVIEW
Use and Taxonomy of Social Media in Cancer-Related Research: A Systematic Review Little is known about how social media are used in cancer care. We conducted a systematic review of the use and taxonomy of social media in cancer-related studies, in PubMed, Web of Knowledge, CINAHL, and Google Scholar. We located 1350 articles published through October 2013; 69 met study inclusion criteria. Early research (1996–2007) was predominantly descriptive studies of online forums. Later, researchers began analyzing blogs, videos shared on YouTube, and social networking sites. Most studies (n = 62) were descriptive, and only 7 reported intervention studies published since 2010. Future research should include more intervention studies to determine how social media can influence behavior, and more empirical research is needed on how social media may be used to reduce health disparities. (Am J Public Health. 2014;104:e20–e37. doi:10. 2105/AJPH.2014.301980)
Alexis Koskan, PhD, Lynne Klasko, MPH, Stacy N. Davis, PhD, MPH, Clement K. Gwede, RN, PhD, MPH, Kristen J. Wells, PhD, MPH, Ambuj Kumar, MD, MPH, Natalia Lopez, BS, and Cathy D. Meade, RN, PhD
SOCIAL MEDIA ARE DEFINED as interactive Web sites that enable users to create, share, comment on, and, often, modify content.1 The Centers for Disease Control and Prevention lists the following as social media sites: social networking sites, blogs, microblogs, RSS (Really Simple Syndication) feeds, and online forums.2 A more complete list of social media types is shown in the box on the next page. With social media, the public largely controls what content is created and circulated online, including healthrelated information. Researchers are interested in social media because the public and health practitioners are beginning to use these sites to connect individuals to reliable health promotion information, address impediments to health literacy, enhance patients’ communication with health care providers, and invite diverse audiences to participate in research studies, such as clinical trials.3 In short, social media sites can serve as key health communication channels to increase the bidirectional flow of information.4 The sites provide a location for online dialogue and encourage individuals and communities to interact by providing their opinions, personal accounts, and other information related to disease prevention, early detection, treatment, and survivorship. The Centers for Disease Control and Prevention adds that social media sites enable users to share health information in a timely manner and empower users to make health decisions
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informed by the contributions of other visitors.2 Little is known about how social media are used in health care research. Chou et al. conducted a systematic review of social media sites (Web sites hosted on the Web 2.0 platform) in general health promotion.5 They recommended that more intervention studies should use social media and that social media measurement tools and methods should be developed and refined for future research. Public health researchers, including those whose focus is cancer, are beginning to examine how social media are changing the health communication landscape.3 The type of information shared, purpose of use, and application of social media sites for cancerrelated information may differ from the use of social media sites for general health promotion and in other health contexts. In particular, it is unclear whether the complexity of cancer treatment and survivorship and the need for provider and caregiver involvement influence how social media sites are used for health information. For example, individuals or organizations who search for general health promotion information (nonspecific to particular diseases and treatments) on social media sites may be looking for information about general positive lifestyle behaviors (e.g., diet, nutrition, smoking cessation). Individuals who browse social media sites for cancer-related information, however, may be searching for more
specific content related to the different stages of the cancer continuum (prevention, diagnosis, treatment, treatment aftermath). They may also search for online social support to share or understand others’ cancer-related experiences. For example, cancer survivors and their caregivers may more actively seek support and search for information about treatment, treatment side effects, and symptom management. Interventions for cancer survivors may also entail challenges in study implementation arising from the health of study participants. Similarly, it is unclear whether interventions that use social media sites as the vehicle for cancer communication would elicit similar efficacy or participation levels as those reported by Chou et al.5 Nevertheless, in light of the potential power of social media to affect cancer information sharing and seeking and the enactment of prevention behaviors, it is important to explore how these new, widely and increasingly accepted communication channels can be used across the cancer continuum. Communication technologies that allow users to access social media sites (e.g., computers, tablets, smartphones) are increasingly available. Newer devices can bring information to wider populations, including those who have had limited computer Internet access and have traditionally have been affected by the digital divide.5,6 Chou et al. have examined ways that social media can narrow this communication digital divide for
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Examples of Social Media and Other Types of Electronic Communication Social Media
Not Social Media
Blogs
E-mail
Microblogs Social networking sites
Listserv Regular Web page
Social bookmarking sites
Prerecorded podcast
Online support groups (online forum) Online message boards (online forum) Video-sharing sites Photo-sharing sites
Eligibility Criteria
Virtual worlds Wikis Some forms of online games
health promotion.5 Similarly, it is important to examine how social media may bring cancer-related information and interventions to populations affected by the digital divide and subject to disparities in both cancer and cancer communication. In response to this gap in knowledge, we conducted a systematic review of peer-reviewed studies specific to social media and cancer. We aimed to (1) examine the taxonomy and time line of social media sites used in cancer care, and (2) categorize the designs of studies that assessed the role of social media in the context of cancer care. Although it was not a primary aim of our review, we also examined the extent to which cancer-related articles published on social media discussed the digital divide, health literacy, and the potential impact of social media interventions on cancer disparities.
METHODS We conducted a systematic review of articles published through October 2013 (with no specified beginning date) and followed the
cancer; (phone application OR “phone application”) AND cancer; (interactive media OR “interactive media”) AND cancer; (twitter OR “Twitter”) AND cancer; (myspace OR “MySpace”) AND cancer; (facebook OR “Facebook”) AND cancer; (youtube OR “YouTube”) AND cancer; (Second Life OR “Second Life”) AND cancer; (Smart Phone OR “Smart Phone”) AND cancer.
Preferred Reporting Items for Systematic Reviews and MetaAnalysis guidelines.7 With the assistance of a medical librarian, we developed a comprehensive search strategy for 3 medical---health care databases (PubMed, Web of Knowledge, CINAHL) and Google Scholar. We used the following search strategy and search terms: (social media OR “social media”) AND cancer; (Web 2.0 OR “Web 2.0”) AND cancer; (Medicine 2.0 AND “Medicine 2.0”) AND cancer; (Mhealth 2.0 AND “M-health”) AND cancer; (E-health OR “E-health”) AND cancer; (social networking site AND “social networking site”) AND cancer; (social bookmarking OR “social bookmarking”) AND cancer; (discussion thread OR “discussion thread”) AND cancer; (message board OR “message board”) AND cancer; (blogs OR “blogs”) AND cancer; (online communities OR “online communities”) AND cancer; (RSS OR “RSS”) AND cancer; (photo sharing OR “photo sharing”) AND cancer; (video sharing OR “video sharing”) AND cancer; (wikis OR “wikis”) AND cancer; (virtual world OR “virtual world”) AND
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Articles that focused on social media across the cancer continuum were eligible for inclusion. We applied no restrictions on the year articles were published. We excluded articles if they were not written in English, did not specifically discuss both cancer and social media, only mentioned social media without actual application of social media, were not research articles (e.g., editorials, letters to the editor, review articles), or were gray literature (e.g., non---peer-reviewed literature such as dissertations, unpublished manuscripts, and book chapters). Figure 1 illustrates article selection according to our eligibility criteria. Four authors independently scanned the titles and abstracts of the articles found in the search to assess their eligibility for the systematic review. When we could not make a decision regarding study inclusion from the study title and abstract, we retrieved the full text of the article and evaluated the content for eligibility. Another author arbitrated and resolved any disagreements.
each article) according to the following elements: 1. type of cancer, 2. type of social media site, 3. content of social media, 4. how social media was used in the study (e.g., purpose, such as sharing information, recruitment), 5. study design, 6. data collection procedures, 7. characteristics of participant population (e.g., gender, race, ethnicity, age), 8. key findings of the study, and 9. whether the study described how the use of social media sites related to the digital divide, health disparities, or health literacy. We reviewed all extracted data for accuracy. When we identified discrepancies, an additional author served as an arbitrator to reconcile these differences. Our team met several times to discuss the data, achieve consensus, and synthesize findings.
RESULTS The initial search yielded 1350 articles. We excluded 635 duplicates, 410 articles that did not pertain to both social media and cancer, 220 that were not research articles, 11 that we considered to be gray literature, 3 literature reviews, and 2 that were written in a language other than English. We reviewed the 69 studies that met inclusion criteria (Figure 1).
Data Collection
Social Media Taxonomy and Time Line
We created a standardized data extraction form, and the entire team reviewed it before use. Four authors independently extracted data from all included studies (2 authors independently reviewed
The earliest studies on social media and cancer that we found were published in 1996.8 Early studies primarily described content and provided thematic analyses of messages posted on online
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Initial Search Web of Knowledge n = 453 PubMed n = 470 CINAHL n = 106 Google Scholar n = 321 Total n = 1350
Duplicates n = 635
Manually excluded upon reading articles n = 646
Did not focus on the combination of SM and cancer n = 410 Grey literature n = 11 Not a research article n = 220
Total articles for review n = 69
Literature reviews n=3 Not written in English n=2
FIGURE 1—Flowchart of article selection and inclusion criteria for systematic review of social media (SM) in cancer research.
cancer forums. From 1996 to 2013, online forums, such as discussion boards or forums, message boards, online support group Web sites (n = 38; 55.1%), were the most common form of social media reported in the studies.8---45 Beginning in 2008,46 researchers also began analyzing the use and content of blogs and blog responses, often examining reasons for and benefits of blogging during cancer treatment and survivorship (n = 7; 10.1%).46---52 Published studies also specifically addressed cancer-related use of videosharing sites such as YouTube (n = 5; 7.2%),53---57 and social
networking sites such as Facebook (n = 8; 11.6%).58---65 Only 1 study (1.4%) explored the use of a virtual world, Second Life, to demonstrate how an interactive world can help to train physicians to share medical bad news, such as a cancer diagnosis.66 Research describing the use of social bookmarking sites (e.g., Digg.com, Redditt.com) was also less common. One study (1.4%) assessed which Web sites that featured information about prostate cancer screening recommendations users were reading and sharing on the 4 most widely used social bookmarking sites.67
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Researchers began publishing articles (n = 3; 4.3%) on the use of microblogs, particularly Twitter, in 2012.68---70 Also in 2012, articles (n = 8; 11.4%) began to appear on a combination of social media types, such as social networking sites and blogs or online videos and support groups.42,62,63,71---76
Social Media by Cancer Focus and Type Studies most often focused on breast cancer (n = 22; 31.9%),8,10,12,13,16,17,22,25,26,28--30,35,41---43,45,58,60,66,74,75 and prostate cancer (n = 4; 5.8%).36,56,67,76
Other cancers mentioned were osteosarcoma,73 rhabdomyosarcoma,55 testicular,11 skin,23 cervical,37,53,59,65 ovarian,21, lung,34 and colorectal.14,24 Cancer in general was the focus of 21 articles (30.4%),9,15,19,20,31---33,38,40,44,46--48,52,54,57,62---64,70,72 and 11 (15.9%) discussed multiple types of cancer.18,27,34,39,49---51,61,68,69,71 Most articles that described social media use in breast cancer care focused on content analysis of online forums for provision of information and emotional support as well as self-expression (n = 13; 18.8%).8,10,12,16,17,25,26,30,35,39,41,42,45 In the articles about cancer in general, authors described how social media users often posted content about cancer treatments (e.g., prescriptions, chemotherapy, radiation) as well as disease outcomes and expectations (n =13; 18.8%).9,15,18,31---33,39,40,46,48,52,54,70 For example, 1 article described the use of a social media site to encourage women with gynecologic cancers to discuss their concerns related to sexual distress, anxiety, and depression arising from their diagnosis and treatment.18 Less often, researchers discussed research about cancer prevention information on social media sites (n = 3; 4.3%).37,53,59 Two studies explored the type of information end users posted on social media sites about the human papillomavirus (HPV) and the HPV vaccine.37,53 In another study, researchers used a social networking site to recruit participants to take a survey that measured individuals’ HPV and cervical cancer knowledge. A total of 6 studies (8.7%) used social media sites to recruit participants for their research.23,59---62,74 In these studies, researchers located specific cancer-related Facebook groups or interest pages and either messaged individual members or posted a recruitment advertisement
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for their study on the group’s main Facebook page.
Social Media Types, Study Goals, and Designs Most articles analyzed the content of social media sites (Table 1), such as online forums, emphasizing their use by participants as sounding boards to express emotions and to raise awareness about cancer, provide support for cancer survivors and caregivers, promote information sharing and problem solving, recommend specific treatments, and, less often, raise funds for cancer-related initiatives. Other descriptive studies (n = 12; 17.4%; Table 2) used surveys,11,23,24,28,40,43,46,59,60,63,65,74 in-depth interviews,47 focus groups,48 social network analyses,20,68 a mix of measurement techniques,8,9,13,22,30,39 Web metrics,72,73 and frequencies62 to describe how users employed social media to obtain and receive cancer information. It is important to note that only 1 of these studies reviewed the accuracy of information posted on a social media site (YouTube); it reported that roughly 75% of all videos had either fair or poor information about prostate cancer screening.56 Seven articles (10.1%) described the use of social media interventions for affecting health behaviors and social support (Table 3),18,19,29,36,57,64,66 of which 4 had an experimental design19,29,36,64 and 3 were feasibility studies.18,57,66 Studies with experimental designs sought to lessen depression,19,29 increase social support,57 and increase the quality of life of cancer survivors.36 The other 3 studies that contained social media interventions were designed to (1) increase support for women who were sexually distressed subsequent to gynecologic cancer treatment,18
(2) use Facebook to increase social support for physical activity among cancer survivors,64 and (3) use a virtual world as a mock setting for training physicians to deliver medical bad news, such as a cancer diagnosis.66
Social Media and Disparities A secondary goal of our review was to extract data about how authors described health disparities in their work. We examined how authors described health disparities among diverse populations and the role of the digital divide and limited general and health literacy, which may contribute to disparities in health communication. Of the 69 articles, 7 (10.1%) touched on cancer disparities,22,51,52,64,67,72,74 and these articles often discussed populations that were underserved or overlooked because of age, geography, race, or ethnicity. Three studies concentrated on young adult cancer survivors, an understudied population, who often lack services and resources specific to their needs.51,52,64 Three studies focused on the use of social media to address African Americans’ increased risk for specific cancers (prostate cancer and breast cancer).22,67,74 One study described health and communication-related disparities, in particular how articles about prostate cancer screening that were posted on social bookmarking sites did not adequately discuss screening guidelines for African American men, a population at increased risk for prostate cancer.67 Three studies (4.3%) discussed the digital divide—individuals’ lack of access to Internet communication— in relation to race and ethnicity.22,28,72 One study highlighted the growing use of the Internet among US Hispanics, thus shrinking the digital divide;
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presenting information online may be a viable new method to promote health information access for Hispanics.72 Two other studies directly aimed to reduce the digital divide via social media (e.g., providing Internet-based health services) for breast cancer survivors living in rural, medically underserved areas.22,28 Five studies (7.2%) mentioned health literacy, and in some cases site readability, in the context of using social media for cancer care.11,57,61,65,73 One article described the need for a high literacy level to interpret the cancer genetic testing offered by some Web sites.61 Another study reported that insufficient e-health literacy deterred participation in an online community.11 Participants in 1 study were required to have a minimum of an eighth-grade reading level to participate in a Web-based intervention aimed at increasing support for cancer survivors.57 Another study posited that participants in online support groups may already have higher health literacy levels than nonusers of such online communities.65 In 1 study, readability was an outcome in a study assessing osteosarcoma information on the Internet and social media channels. Overall, the researchers rated the information on osteosarcomarelated Web sites as fair, but most Web sites did not reach the recommended standards on ease of understanding.73
DISCUSSION Our review was the first, to our knowledge, to assess the taxonomy and characterize the use of social media across the cancer spectrum. The earliest research in this field (1996---2007) comprised descriptive studies analyzing the use and content of cancer-related
online communities such as message boards, discussion threads, and support groups. Social media intervention studies were not reported until 2010. Our findings suggest that the use of social media has evolved from simple information delivery and access via online forums to intervention studies with increased use of interactive strategies. Most social media research in our review analyzed the content of online forums where users asynchronously posted or responded to information with resource and information sharing or emotional support. Our findings highlight the possible lag between what has been reported in peer-reviewed literature about how individuals use different types of social media sites to find cancer information and support and the public’s current use of these sites for similar information and reasons. For example, social networking sites (e.g., Facebook) are among the most popular forms of social media, but they received limited attention in social media research related to cancer. However, this finding may also indicate that the public prefers to search directly for cancerrelated information or to seek support on online message boards rather than on social networking sites. This preference for online message boards may be attributable to users’ preference to remain anonymous and “faceless,” as opposed to posting personal information, pictures, and other identifying information (as happens on social networking sites) when searching for cancer information. Therefore, interventions that use social media as a health communication channel possibly should focus on cancer survivors and caregivers and host online support groups or forums that allow users to remain anonymous if they wish.
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faced similar situations.
and workplace relationships, intrusion into
did disclosure of emotions. Continued
Overall, disclosure of insights in online groups had
with AI-associated arthralgia.
members offered support and advice for coping
stronger effects on enhancing health benefits than
38% mentioned switching AIs. Many community
AI-related arthralgia.
support groups.
osteoporosis, weight gain). In studies reporting AI use, 13% of patients reported discontinuing and
discussed by female BC patients on BC message boards related to AIs, with particular emphasis on
disclosure of insights and emotions in online
effect (joint/musculoskeletal pain, hot flashes,
effects and associated adherence behaviors
women with BC
Few AI-related posts (18%) mentioned ‡ 1 side Understand the frequency and content of side
with the decision.
mother–children relationship, and coming to terms
perception of self–other stigma, shifts in friendship
process from posts on the FORCE Web site.
Themes included self-image and interpersonal relationships, feeling loss of natural breasts,
decision-making, recuperation, and reconstruction
Examine the physical, psychological, and social consequences of prophylactic mastectomy during
recommended reflected patients’ expertise and
its role in facilitating patient expertise.
Examine how women with BC benefit from written
Women aged 30–49 y
Kenen et al.26
knowledge, and information resources peers
informational support that peers exchanged and
offered a source for others to learn from as they
for future and emergent events. Action strategies,
understand the prevalence and characteristics of
Support centered on collaborative problem solving
centered, experiential knowledge, treatments/ procedures, medications, condition management.
Use online BC communities as a window to
of common categories: generic, support, patient
fibromyalgia from social networking site DailyStrength.
Medically underserved African American and White
BC survivors, current patients, and caregivers
Civan and Pratt17
nonprofit, and moderated by community members. Clusters for each condition differed but all fit a set
for 3 conditions: BC, type 1 diabetes, and
Characterize and compare online discussion forums
Shim et al.41,a
Unknown
Chen16
34% were exclusive to BC, 1% catered to specific
online communities for female BC survivors.
disease characteristics. Most sites were American,
Retrieved 111 Web sites: 65% had a broad focus,
Identify the characteristics and levels of use of
companies money rather than save lives.
BC patients
White BC survivors
Bender et al.12
guidelines, believing they aimed to save insurance
for mammography screening from 5 BC discussion boards.
Women felt betrayed by new BRCA screening
Key Findings
Preventive Services Task Force recommendations
Examine reactions of women with BC to the 2009 US
Online forums
Social Media Platforms/Study Goals
Mao et al.35
BC survivors and current patients
Participants
Barker and Galardi10
Breast
Type of Cancer/Study
TABLE 1—Social Media Cancer Studies With Descriptive Design and Content Analysis Focus
SYSTEMATIC REVIEW
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Colorectal: Beusterien et al.14
the most common responses to requests for
as a resource for decision-making.
and Internet, and coping strategies were important
forums.
strategies. Continued
impacts exemplified resilience and positive coping
impact on life, and emotional distress. Emotional
Common themes were treatment side effects,
diabetic patients.
discussion boards (BC, lung cancer, diabetes) on Medhelp.org. Explore impact of CRC treatments in patient Web
on symptoms. BC patients discussed complications less often than lung cancer and
interesting topics among different types of disease
diabetes), caregivers, and a few providers
Patients with advanced cancer
examinations; lung cancer boards focused more
Determine (by text clustering method) differences in
BC discussion boards were more likely to discuss
being in control during BC treatments.
exchange generated sense of trust and feeling of
risk who post to Facing our Risk of Cancer Empowered discussion board.
about prophylactic oophorectomies. Online
emotional support needs of women with hereditary
Women sought emotional and informational support
messaging. Themes included mistrust, helpfulness of vaccine, uncertainty.
forums. Understand the unique health concerns and
appeals to authority to provide power to
expressed on Romanian Internet discussion
Positive and negative discourses found; both used
knowledge while building trust and support.
technical and emotional self-management
families deal with ovarian cancer. Explore public’s constructions of HPV vaccine as
information provider process, sharing both
medhelp.org) play in helping patients and their
Users participated in information seeker–
the absence of a formal normative hierarchy.
how consumers exercise their “voice” within complex professional services. Illustrate role that online communities (http://
perspective; participants negotiated knowledge in
an online BC community for midlife women and
Most medical information reported from patient
factors in predicting emotional support patterns.
Age, living situation, comfort level with computer
predict this pattern of change. Demonstrate construction of tacit knowledge with
increased in first 12 wk of study, then decreased.
women, changes over time and what factors
of advice solicitation. Individual expression of emotional support
problem disclosure were the most common types
CHESS, an online BC support group for midlife
Explore how expression of emotional support in
messages. Direct and hedged types of advice were
support forum to better understand online groups advice. Requests for opinions or information and
Advice was offered in ;40% of all support group
Examine how peers exchange advice in an online BC
Patients with chronic conditions (cancer or
Women at high risk for BC and ovarian cancer
Breast and ovarian: Kenen et al.27
Breast and lung: Lu et al.34
Romanian men and women
Cervical: Penţa and Băban37
Women aged 40–65 y
Keeling et al.25
Unknown
BC patients
Yoo et al.45
Ovarian: Gill and Whisnant21
BC patients
Sillence42
TABLE 1—Continued
SYSTEMATIC REVIEW
Koskan et al. | Peer Reviewed | Systematic Review | e25
Examine value of facilitated telephone and online support groups for palliative care.
Adolescents and young adults with cancer
Young adults with cancer
Cancer patients and caregivers
Predominantly White, middle-aged Australian men and women.
Love et al.32
Love et al.33
e26 | Systematic Review | Peer Reviewed | Koskan et al.
Schultz et al.38
Street et al.44
membership.
Only 1 video was produced by a doctor; 82.5% were produced by patients or their families, and these mostly commemorated a child’s death.
Investigate availability and content of YouTube videos about pediatric neoplastic diseases (rhabdomyosarcoma and soft tissue sarcoma)
Adolescent cancer survivors and parents of living and deceased pediatric cancer patients
Rhabdomyosarcoma: Clerici et al.55
actions after diagnosis, evaluation of cancer
videos.
Continued
Of 149 videos analyzed, 25 were considered useful.
event.
diagnosis, results and resolution of diagnosis
diagnosed with cancer, series of complicating
a linguistically based narrative analysis of YouTube
vaccine. Common themes were orientation of being
Cancer survivors
vaccination. Describe authentic personal cancer stories through
General: Chou et al.54
YouTube videos more often positively portrayed HPV
Analyze how YouTube videos portray HPV
Unknown
to be safe and accessible.
on the present. Participants reported these forums
or on deferring discussion of death/dying to focus
Participant narratives focused on dying with dignity
most often posted about treatment, and lung cancer patients most often posted about support.
family members of cancer survivors. BC patients
nonpatients, 22% were spouses and 69% were
Most posters (60%) were cancer patients. Of
health, and enjoyment.
treatment, promoting general health and mental
losing weight, obtaining nutrients despite
Participants described several functions achieved through nutrition and exercise: fighting cancer,
Cervical: Ache and Wallace53
Video-sharing sites
Cancer Center Web site and message board.
Review traffic to University of Texas MD Anderson
adult cancer forum.
Describe topics, needs, and concerns related to nutrition and exercise posted on an online young
experiences, enacting identity, and communicating
Themes were exchanging support, coping, describing
communication work.
everyday life, and biographical and
helps define their efforts. Identify topics discussed in an online forum.
trajectories, including management of illness,
identify needs, and assess how notion of works
informational support content. Nutrition and exercise needs affected illness
content; those with lower survival rates had more
Understand patients’ exercise and nutrition habits,
survival rates had more emotional support
varies according to cancer survival rate. Young adults with cancer
informational support. Communities with high
Online Resources and Yahoo!) for different cancers
Emotional support was more common than
support communities (Association of Cancer
Love et al.31
Determine how social support content in online
Unknown
Buis and Whitten15
General
TABLE 1—Continued
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Japanese men and women
Older adult African American men
General: Sugawara et al.70
Prostate: Friedman et al.67,b
Unknown
Cervical and breast: Lyles et al.69
Late adolescent and young adult women
Keim-Malpass et al.50
Women and men aged 20–29 y
Late adolescent and young adult women
Keim-Malpass et al.49
General: Kim and Gillham52,b
Late adolescent and young adult women
Unknown
Keim-Malpass and Steeves51,b
sarcoma, and melanoma
Breast, colorectal, Hodgkin lymphoma, ovarian,
Prostate: Steinberg et al.56
TABLE 1—Continued
experiences (attending appointments, negative
screening.
reviewed also encouraged individuals to seek more information about PC or cancer screening. Continued
for high-risk individuals; > 50% of the sites sites.
Most articles did not discuss screening guidelines
discussions, and other psychological support.
Most tweets focused on greetings, treatment
information tagged on 4 major social bookmarking
Examine content of articles related to PC screening
Social bookmarking sites
lives of today’s wired cancer patients.
Examine recent Twitter usage to evaluate role in
;25% of messages discussed personal content.
sentiments about procedure, results); 8% of Pap test and 18% of mammogram messages promoted
messages (> 75% from individual accounts);
exists for meaningful analysis, and nature of
Study coded 203 Pap test and 271 mammogram
and cancer survivorship.
mortality, images of cancer, creating a positive attitude, health care, online social interaction,
isolation (physical and psychological), guilt,
Themes were physical burdens, future prospects,
symptoms (including anxiety).
financial barriers, infertility, and post-traumatic
Themes were pain and fatigue, insurance and
incorporated loss), the good stuff in life, and release.
normal), establishing new identities (that
Themes were awakening (understanding the new
normal, urgency and transition into the unknown.
healthy/living and dead, establishing a new
Themes were living in the middle between sick and
against treatment or PSA testing.
or PSA testing present in 69%; none were biased
information content. Bias for surgery, radiotherapy,
and 32 on surgery; 73% had fair or poor
Search found 14 videos on PSA, 5 on radiotherapy,
is discussed on Twitter, whether sufficient volume
Ascertain whether cervical cancer and BC screening
cancer patients through PlanetCancer.org blogs.
Explore experiences of and better understand
Analyze cancer survivor blogs.
online cancer blogs.
Examine complementary therapy use described in
Analyze cancer patients’ online illness blogs.
Microblog
Blogs
content and bias.
Analyze PC videos on YouTube for information
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Note. AI = aromatase inhibitor; BC = breast cancer; CRC = colorectal cancer; FORCE = Facing our Risk of Cancer Empowered; HPV = human papilloma virus; PAP = Papanicolau; PC = prostate cancer; PSA = prostate-specific antigen. a Article references Internet access digital divide. b Article references cancer health disparities.
did not vary between blogs and online forums.
treatment outcomes and side effects. Processes
processing (36.5%), messages mostly considered
and proof of cancer removal. For systematic
decision processes, most often deferral to doctor exposed to on PC online message boards.
research.
Many messages (49.6%) reported nonsystematic Young adult and midlife men Prostate: Sillence and Mo76
Explore types of decision-making processes users
Search found 216 BC groups, 171 CRC groups, and
527 diabetes groups. CRC and BC groups mostly focused on prevention, diabetes groups on Twitter groups concerning CRC, BC, and diabetes.
Characterize purpose and use of Facebook and Unknown Colorectal and breast: De la Torre-Dı´ez et al.71
Use of discussion forms increased over past 5 y.
posts were common and less likely to be accurate.
posts on blogs or discussion forums. Anonymous
Accuracy levels were high, but significantly lower in
BC-related topics had significantly more posts/ d than others. Most posts were on media sites. Unknown Breast: Quinn et al.75
Assess daily new BC-related posts on the Internet.
Web sites. Multiple channels
cancer awareness, or promote external BC-related Facebook groups related to BC.
Characterize purpose, use, and creators of Unknown Breast: Bender et al.58
TABLE 1—Continued
Social networking site
Groups most often created to raise funds, raise
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Our analysis also showed that previous research focused primarily on describing social media cancer content but rarely evaluated the accuracy or usefulness of such information. Only 1 study critiqued the accuracy of cancerrelated information posted on a social media site, and it found that the majority of the site’s videos contained suboptimal information. Inaccurate medical information on the Internet may lead to users misdiagnosing themselves, altering prescription medication regimens, failing to follow physician recommendations, and sharing incorrect medical information.77 Therefore, future research should assess the accuracy of cancer information shared on social media sites. We also assessed how researchers use social media to address cancer-related disparities and to reduce the digital divide. Although 7 studies discussed health disparities, none focused specifically on reducing cancer disparities via social media. Chou et al. found that significantly more minority than White Americans used social networking sites (45% vs 31%), suggesting that social media can provide researchers with a unique opportunity to provide targeted health information to minority populations.78 One study focused specifically on reducing cancer-related disparities (for young cancer survivors) via social media interventions.64 Thus, although we observed exponential growth in the use of social media in cancer care, we found a deficit of published descriptive and intervention studies addressing cancer health disparities. Furthermore, the lack of robust descriptions of demographic and other characteristics of participants in the majority of these studies precluded thoughtful
American Journal of Public Health | July 2014, Vol 104, No. 7
July 2014, Vol 104, No. 7 | American Journal of Public Health
Survey and content analysis
Online survey
Measurement
less likely to have BC concerns and more likely to reframe their problems positively as well as to adopt positive strategies for coping.
examine interplay between emotional support giving and receiving and the effects of emotional support giving and receiving on patients’ psychosocial
online support group.
symptoms and QOL.
General (Fernsler and Manchester9)
Testicular (Bender et al.11,b)
correlated with African American race
social media, and online communities.
Adult cancer survivors
respondents (76%) used social media and 26% had used an online support
of survivors and their use of Internet,
survivors
connect with others sharing similar
information.
Continued
to encourage other survivors, and to seek emotional support
cancer experiences, to seek information,
Respondents used the cancer forum to
Use forum to post cancer-related
language and to have unmet needs.
more likely to speak English as a first
community. Social media users were
needs; 62.5% had ‡ 1 unmet need. Most
Examine met or unmet support care needs
Participants had more met than unmet
marital status, and CRC worry.
and negatively correlated with age,
sharing narratives. This positively (sparkpeople.com).
Among members who were up to date with CRC screening, 39% were interested in of an online weight loss community
Assess the acceptability of narratives to promote CRC screening among members
resources. All participants reported positive effects on
Canadian young adult male cancer
Older adult cancer survivors
participants to complete a survey on
xeroderma pigmentosum Colorectal (Hwang et al.24)
lifestyles and QOL from participation in
Use online support group to recruit
printed self-help and interactive online
partners of hereditary BC survivors. Adult patients and parents of children with
content areas. Partners tended to prefer
psychoeducational needs among
Skin (Hawkins et al.23)
Partners had a moderately high need for psychoeducational interventions across
Understand the role of a Web-based message board and chat in meeting
Adult partners (male and female) of women at risk for hereditary BC
Those receiving high social support were
Breast (Tercyak et al.43)
health outcomes.
Individuals with less education and lower
higher satisfaction with health status.
Use online support groups (CHESS) to
levels of satisfaction with health status.
control over their illness and lead to
and White women with BC
control over cancer, which led to higher
interactions encourage patients’ sense of
income levels reported more benefits from electronic coping support.
Online support increased perception of
Examine whether online self-help group
Medically underserved African American
Key Findings
Breast (Kim et al.28,a)
Social Media Platforms/Study Goals
Adult cancer survivors
Participants
General (Seckin )
40
Type of Cancer (Study)
TABLE 2—Social Media Cancer Studies With Descriptive Designs and Various Foci
SYSTEMATIC REVIEW
Koskan et al. | Peer Reviewed | Systematic Review | e29
e30 | Systematic Review | Peer Reviewed | Koskan et al.
General (Andersson et al.47)
Interviews
Swedish adult relatives of cancer patients
Blogs
Adult cancer survivors
Breast and prostate (Seale39)
In-depth interviews and content analysis
Patients, caregivers, researchers, and providers
General (Durant et al.20)
Social network analysis
Adult BC patients
Medically underserved African American and White women with BC
Breast (Han et al.22,a,c)
Survey and Web metrics
Breast (Lieberman and Goldstein30)
Canadian adult BC survivors
Breast (Bender et al.13)
Survey and in-depth interviews
Focus groups and content analysis
Adult BC patients
Breast (Weinberg et al.8)
TABLE 2—Continued
board 158 times. Online approach was similar to face-to-face support groups.
boards that emotional and informational support.
of participants, mostly during cancer treatment, for information, symptom
from the perspective of survivors who are face-to-face support group facilitators.
messages, 32% lurked on the sites, and 23.4% did not log in to the system.
levels of engagement on an online BC support group message board (CHESS).
Web forum provided more detailed health and sexual health information
involving people with BC and PC and discussion of sexual health.
cancer, vulnerability in writing the blog, sensitivity of information, not knowing who viewed the blog, blogging to ease burden of
when a family member is in the end-oflife phase of cancer.
Continued
cancer, and blogging to build strength.
Themes were delivering information about
Highlight relatives’ experiences of blogging
online than during in-depth interviews.
depression. Patients who disclosed information on the Compare interviews and Internet postings
associated with lower QOL and with
Expression of fear and anxiety was
predict psychosocial improvement.
participating in online bulletin boards.
a women-specific cancer forum.
community.
Expression of negative emotion did not
to form a highly intimate bond on
interactions in an online cancer Examine emotions expressed by women
Men preferred to socialize in large, less intimate groups. Women were more likely
Determine whether gender-preferred social styles can be observed in user
support than those who posted online.
and lurkers had significantly more social
were younger and lived alone. Nonusers
Women who posted were more often
Many women do not use online support groups. Of participants, 44.6% posted
Explore the social and psychological characteristics that predict different
peak stress or uncertainty.
address unmet needs during periods of
management, and an emotional outlet to
Online communities were used by 31.5%
Explore the role of online communities
experiences and concerns, and offered support for other members.
condition/treatment, shared personal
Participants discussed medical
Participants logged in to the BC bulletin
Investigate the use of online message
SYSTEMATIC REVIEW
American Journal of Public Health | July 2014, Vol 104, No. 7
July 2014, Vol 104, No. 7 | American Journal of Public Health
Survey
Cervical (Gunasekaran et al.59)
Cervical (Zaid et al.65,b)
Breast and prostate (Himelboim and Han68)
Social network analysis
is a common virus. Predictors of high HPV knowledge were older age, higher SES, Australian birth, older at sexual
cervical cancer and HPV knowledge among participants recruited on Facebook
Continued
debut, awareness of HPV vaccines, selfreported HPV vaccination status.
Most respondents (> 50%) knew that HPV
conducted efficiently and rapidly.
Social media permitted research to be
and QOL research with patients with rare gynecologic tumors appeared feasible.
Use of social media for epidemiological
in PC clusters.
in BC clusters but played an integral role
Visiting communities were not common
significantly larger than PC communities.
Regardless of group classification, communities that discussed BC were
sources, and user interactions.
patterns of information flow, information
of communities exhibited distinct
visiting communities. The different types
Assess and investigate predictors of
Facebook for epidemiological and QOL research.
Young adult women in Australia
Determine feasibility of posting a survey on
cervical cancer
Social networking sites
communities and groups who more
information on Twitter about BC and PC.
sporadically discussed these cancers as
Authors categorized groups who frequently posted about BC and PC as core
management and information sharing.
blogging most helpful for emotion
information sharing. Participants found
solving, emotion management, and
blog use: prevention and care, problem
a sense of belonging. Four areas emerged as gratifications of
Assess density and interconnectedness of social networks of individuals who post
Women with history of small- or large-cell
Unknown
gratification outcomes.
companions
Microblog
Examine use of blogs related to
Adult cancer patients and their
patients, influence of other cancer
a role in their illness experience.
General (Chung and Kim46)
strength, writing to support fellow
sites, and online support groups play
Survey
after death, writing for relief and gaining
and reading blogs, social networking
patients, finding other survivors, and
Themes were wanting to be remembered
Explore how cancer patients’ posting on
Adult cancer patients and caregivers
General (Chiu and Hsieh48)
Focus groups
TABLE 2—Continued
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Koskan et al. | Peer Reviewed | Systematic Review | e31
Young adults and adult genetic counselors
Colon and skin (Leighton et al.61,b)
proceeded to survey; none completed
patients via Facebook.
e32 | Systematic Review | Peer Reviewed | Koskan et al.
stereotypes about survivorship and
cancer survivors
or postal mail to promote walking and resistance activities. Intervention preferences did not differ by medical or
physical activity intervention preferences and whether preferences differ by medical or demographic factors.
internalizing positive and negative stereotypes. Self-perceived negative
networking site and video blog for cancer survivors (LIFECommunity).
mailings. Internet and social media recruitment accounted for 15% of study
participants for for pilot intervention, including use of Facebook and Twitter.
enrollees.
contacts, 7% of those screened, and no
with depression. Most participants were recruited from Assess various strategies to recruit
stereotypes were positively associated
each other. Survey found evidence for
psychological health on a social
demographic factors. Survivors of childhood cancer did not
interventions that used the Web, e-mail,
Twitter) recruitment to determine
provided adolescent-specific content. Participants were interested in
information on pediatric osteosarcoma. Use social networking (blog, Facebook,
Note. BC = breast cancer; CRC = colorectal cancer; HPV = human papilloma virus; PC = prostate cancer; QOL = quality of life; SES = socioeconomic status. a Article references Internet access digital divide. b Article references health literacy. c Article references cancer health disparities.
Frequencies of study enrollment
Young adult cancer survivors
when discussing their experiences with
these are associated with internalized
Racial and ethnic minority young adult
General (Song et al.63)
Survey
General (Rabin et al.62)
publicly dwell on cancer stereotypes
Explore cancer survivor identities and how
Adult African American BC survivors
adolescent-specific content. Only 1 Web site achieved readability targets and
media.
cancer resources for cancer survivors. reach of blogs, YouTube, Facebook, and social bookmarking sites used to post
campaign with the addition of social
and access to existing Spanish-language
Only 12.5% of social media included
2008 print and radio campaign to 2009
networking sites to increase awareness of
Assess quality, readability, and social
Web site traffic increased in all areas from
Use blogs, microblogs, and social
Breast (Paxton et al.74,a,c)
Web metrics
Survey
genetic test results in 3 of 4 chronic disease mock scenarios.
understanding of direct-to-consumer genetic testing.
Unknown
differed significantly in interpretation of
participate in study of perceptions and
Osteosarcoma (Lam et al.73,b)
General public and genetic counselors
Recruit participants via Facebook to
survey.
Few women (3.2%) clicked on ad and
Assess feasibility of recruiting cancer
Racially and ethnically diverse populations
Multiple channels
Women aged 35–49 y
Breast (Kapp et al.60)
General (Justice-Gardiner et al.72,a,c)
TABLE 2—Continued
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American Journal of Public Health | July 2014, Vol 104, No. 7
Explore effect of an online support group (Us TOO) intervention on self-reported QOL.
Men; mean age, 67.2 y; White, 85%; African American, 7.5%; Hispanic, 5.0%
Osei et al.36
cancer treatment.
Prostate
effect for reduction in sexual distress.
distressed subsequent to gynecologic
Women; mean age, 52.3 y; White, 90%; African American, 10%
Intent-to-treat analyses suggested a small
specifically for women who are sexually
Klemm29
participants were satisfied with intervention.
online support group (GyneGals) designed
7%
Breast
Exit interviews indicated that most
rates and preliminary outcomes for an
July 2014, Vol 104, No. 7 | American Journal of Public Health
dropouts than individual intervention–only group (3 vs 5). Among participants with depressive symptoms at baseline (n = 17 for both groups), hospital anxiety and
treatment cancer survivors embedded and integrated into an Internet support group (Onward) with ultimate goal of enhancing adherence and learning. Compare with individual Internet intervention alone.
1%; Hispanic, 10%
demonstrate a group-by-time interaction. Moderated groups read and posted significantly more messages than peer-led
depressive symptoms and extent of participation among women with breast cancer.
Continued
groups returned to baseline levels at 8 wk.
sexual, and hormonal health); 6 QOL measures declined in control group. Both
improved in 3 of 6 QOL measures (urinary,
From baseline to 6 weeks, intervention group
groups.
Depressive symptoms did not differ significantly by group or over time or
Evaluate effects of different formats of online group support (moderated vs peer led) on
depression decreased significantly.
group, 12.5. Onward group had fewer
Examine feasibility and acceptability of individual Internet intervention for post-
Female, 87%; male, 13%; mean age, 50 y; White, 87%; African American, 10%; Asian,
Mean number of logins over 8 wk: Onward group, 20.8; individual intervention–only
group than in immediate treatment group.
Feasibility study to examine participation
Asian, 11%; African American, 8%; Hispanic,
Participation was higher in wait-listed control
portray body language cues. Women; age range, 28–59 y; White, 74%;
Duffecy et al.19
training physicians to deliver bad news.
General
considered the experience positive and
patient avatars in Second Life to use in
novel, although avatars were not able to
trainees improved overall. All participants
Study feasibility of creating standardized
Self-efficacy affective competence scores of
Key Findings
White, 50%; Hispanic, 38%; Asian, 12%
Social Media Platforms/Study Goals
Male, 62%; female, 38%; mean age, 29 y;
Participants
Classen et al.18
Andrade et al.66
Study
Gynecologic
Online forum
Virtual world: breast
Channel/Type of Cancer
TABLE 3—Social Media Cancer Intervention Studies
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Koskan et al. | Peer Reviewed | Systematic Review | e33
Groups did not significantly differ in weekly minutes of moderate vigorous physical self-help comparison condition.
Note. QOL = quality of life. a Article references health literacy. b Article references cancer health disparities. c Article references Internet access digital divide.
physical activity than did control group. activity; compare with a Facebook-based
activity.
engaged in more weekly minutes of light based intervention to increase physical White, 91%; African American, 9%;
posting.
Intervention participants lost weight and Evaluate feasibility and efficacy of FacebookFemale, 91%; Male, 9%; mean age, 32 y; Valle et al.64,b,c Social networking site: general
level correlated with more activity in blog
receiving private messages. Decreased needs.
e34 | Systematic Review | Peer Reviewed | Koskan et al.
networking program. A higher depression
and empathy support through sending and their social support, social capital, and QOL
Participants with more family support were less likely to participate in the social
participants’ walls, exchanging information intervention (LIFEcommunity) tailored to
increased levels of online participation.
sharing videos, more frequent visits to other in a social networking and video-sharing
levels of real-life support were linked to
Bridging social capital of participants was positively related to level of participation, Examine key factors that may influence a childhood cancer survivor’s participation Male, 64.3%; female, 35.7%; Hispanic, 85.7%; Asian, 7.1%; Native American, 7.1% McLaughlin et al.57,a Multiple channels (social networking and video sharing): general
TABLE 3—Continued
SYSTEMATIC REVIEW
assessment of the digital divide and its impact on cancer health disparities. Although studies have predicted that social media may be used to bridge the digital divide,5,79,80 at this time it is difficult to fully discern what impact social media will have on reaching underserved groups and reducing the digital divide. Some researchers have noted the persistent gap in broadband Internet access among populations of lower socioeconomic status, but Gibbons et al. believe that social media may be the channels through which the digital divide will be reduced. They assert, however, that more emphasis on remedying health care system, provider, and individual (e.g., health literacy) factors is needed to reduce health disparities.3 Scant attention focused on how social media could be used to address health literacy. In light of the plethora of national public health imperatives for delivering clear and acceptable information, future social media interventions that address health literacy may represent a fertile area of research. Our systematic review revealed a paucity of literature examining intervention applications for social media in cancer care, showing that this area of cancer care research is in its infancy. Taken together with Chou et al.’s work, our findings suggest the need to determine, through empirical intervention research, how these new, widely used communication channels can be exploited to deliver cancer information and influence behaviors. Future research could evaluate the use of social media sites in interventions to enhance behaviors associated with cancer screening, treatment, and follow-up care. Because social
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media sites have been shown to increase the dissemination of health information and provide emotional support, future interventions could test the efficacy of social media to enhance emotional and informational support of cancer survivors. Interventions that use popular social networking sites, such as Facebook, should also be evaluated to determine their potential for promoting cancer screening. Adults aged 18 to 49 years make up the largest group of users of social networking sites such as Facebook and Twitter,81 so these sites might be useful in reaching this age group to promote cancer prevention and control behaviors and to disseminate medically sound health information regarding cancer, with a particular focus on skin and cervical cancer screening, HPV vaccination, smoking cessation, sun exposure reduction, weight management, and the benefits of exercise.
Limitations We excluded articles not published in English. However, our search turned up only 2 articles that were excluded for this reason, likely because our search terms were biased toward studies reported in English. In addition, we did not include scientific contributions of gray literature, such as dissertations and reports published by nonprofit organizations, in our systematic review. However, we included contributions of gray literature in our interpretation of study findings. We did not perform a metaanalysis because of the limited number of quantitative intervention studies and the variations in study design, population, intervention types, exposures, and outcomes. Such an analysis is an important focus of our continuing efforts.
Conclusions Our systematic review highlighted the evolution in the use of social media in cancer care from online forums and message boards where the public shares cancerrelated information and emotional support to multiple sites that provide cancer information and support. Researchers may need to examine the use of other social media sites (such as social networking sites) in light of the increased adoption of these channels by the public and the health industry. Intervention research in this area is in its beginning stages. The paucity of intervention studies suggests an important and emerging area of research for improving behaviors and promoting well-being and quality of life (e.g., increasing cancer screening, motivating youth to use sunscreen, providing support during chemotherapy, reducing fatigue). Research is also needed to explore and evaluate how social media sites can make health information more accessible, engaging, and interactive for increasingly diverse audiences. j
About the Authors At the time of the study, the authors were with Moffitt Cancer Center, Tampa, FL. Correspondence should be sent to Alexis Koskan, PhD, School of Nursing and Health Studies, University of Miami, 5030 Brunson Dr, Coral Gables, FL (e-mail:a.koskan@ miami.edu). Reprints can be ordered at http://www.ajph.org by clicking the “Reprints” link. This article was accepted March 1, 2014.
Contributors A. Koskan led and organized the study, reviewed articles, extracted data, analyzed findings, and was primary author. L. Klasko organized the search and the abstract and articles reviews, extracted data, analyzed findings, and helped write and edit the article. S. N. Davis helped review abstracts and articles, extract data, analyze findings, and write and edit the article. C. K. Gwede provided expertise and oversight, arbitrated differences between criteria
July 2014, Vol 104, No. 7 | American Journal of Public Health
and coding, and reviewed and edited the article. K. J. Wells helped conceptualize the study and systematic review process, provided critical feedback on study conduct, analyzed findings, and edited the article. A. Kumar helped create the inclusion and exclusion criteria, guided researchers on following Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines, and edited the article. N. Lopez helped review abstracts and articles, extract data, and edit the article. C. D. Meade oversaw the study and reviewed and edited the article.
Acknowledgments This study was supported by the National Cancer Institute (grant U54 CA153509 to Cathy D. Meade). Note. The contents of the article are solely the responsibility of the authors and do not necessarily represent the official views of the National Cancer Institute.
Human Participant Protection No protocol approval was required because the study reviewed published research.
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