Use and Taxonomy of Social Media in Cancer-Related Research: A Systematic Review

Abstract

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.

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 health-related 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 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 cancer-related 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 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 Preferred Reporting Items for Systematic Reviews and Meta-Analysis 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; (M-health 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 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.

Eligibility Criteria

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.

FIGURE 1.

Flowchart of article selection and inclusion criteria for systematic review of social media (SM) in cancer research.

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.

Data Collection

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 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).

Social Media Taxonomy and Time Line

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 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 video-sharing 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 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 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

TABLE 1.

Social Media Cancer Studies With Descriptive Design and Content Analysis Focus

Type of Cancer/Study	Participants	Social Media Platforms/Study Goals	Key Findings
Online forums
Breast
Barker and Galardi10	BC survivors and current patients	Examine reactions of women with BC to the 2009 US  Preventive Services Task Force recommendations  for mammography screening from 5 BC discussion  boards.	Women felt betrayed by new BRCA screening  guidelines, believing they aimed to save insurance  companies money rather than save lives.
Bender et al.12	White BC survivors	Identify the characteristics and levels of use of  online communities for female BC survivors.	Retrieved 111 Web sites: 65% had a broad focus,  34% were exclusive to BC, 1% catered to specific  disease characteristics. Most sites were American,  nonprofit, and moderated by community members.
Chen16	Unknown	Characterize and compare online discussion forums  for 3 conditions: BC, type 1 diabetes, and  fibromyalgia from social networking site  DailyStrength.	Clusters for each condition differed but all fit a set  of common categories: generic, support, patient  centered, experiential knowledge, treatments/  procedures, medications, condition management.
Civan and Pratt17	BC survivors, current patients, and caregivers	Use online BC communities as a window to  understand the prevalence and characteristics of  informational support that peers exchanged and  its role in facilitating patient expertise.	Support centered on collaborative problem solving  for future and emergent events. Action strategies,  knowledge, and information resources peers  recommended reflected patients’ expertise and  offered a source for others to learn from as they  faced similar situations.
Kenen et al.26	Women aged 30–49 y	Examine the physical, psychological, and social  consequences of prophylactic mastectomy during  decision-making, recuperation, and reconstruction  process from posts on the FORCE Web site.	Themes included self-image and interpersonal  relationships, feeling loss of natural breasts,  perception of self–other stigma, shifts in friendship  and workplace relationships, intrusion into  mother–children relationship, and coming to terms  with the decision.
Mao et al.35	BC patients	Understand the frequency and content of side  effects and associated adherence behaviors  discussed by female BC patients on BC message  boards related to AIs, with particular emphasis on  AI-related arthralgia.	Few AI-related posts (18%) mentioned ≥ 1 side  effect (joint/musculoskeletal pain, hot flashes,  osteoporosis, weight gain). In studies reporting AI  use, 13% of patients reported discontinuing and  38% mentioned switching AIs. Many community  members offered support and advice for coping  with AI-associated arthralgia.
Shim et al.41,a	Medically underserved African American and White  women with BC	Examine how women with BC benefit from written  disclosure of insights and emotions in online  support groups.	Overall, disclosure of insights in online groups had  stronger effects on enhancing health benefits than  did disclosure of emotions.
Sillence42	BC patients	Examine how peers exchange advice in an online BC  support forum to better understand online groups  as a resource for decision-making.	Advice was offered in ~40% of all support group  messages. Direct and hedged types of advice were  the most common responses to requests for  advice. Requests for opinions or information and  problem disclosure were the most common types  of advice solicitation.
Yoo et al.45	BC patients	Explore how expression of emotional support in  CHESS, an online BC support group for midlife  women, changes over time and what factors  predict this pattern of change.	Individual expression of emotional support  increased in first 12 wk of study, then decreased.  Age, living situation, comfort level with computer  and Internet, and coping strategies were important  factors in predicting emotional support patterns.
Keeling et al.25	Women aged 40–65 y	Demonstrate construction of tacit knowledge with  an online BC community for midlife women and  how consumers exercise their “voice” within  complex professional services.	Most medical information reported from patient  perspective; participants negotiated knowledge in  the absence of a formal normative hierarchy.
Ovarian: Gill and Whisnant21	Unknown	Illustrate role that online communities (http://  medhelp.org) play in helping patients and their  families deal with ovarian cancer.	Users participated in information seeker–  information provider process, sharing both  technical and emotional self-management  knowledge while building trust and support.
Cervical: Penţa and Băban37	Romanian men and women	Explore public’s constructions of HPV vaccine as  expressed on Romanian Internet discussion  forums.	Positive and negative discourses found; both used  appeals to authority to provide power to  messaging. Themes included mistrust, helpfulness  of vaccine, uncertainty.
Breast and ovarian: Kenen et al.27	Women at high risk for BC and ovarian cancer	Understand the unique health concerns and  emotional support needs of women with hereditary  risk who post to Facing our Risk of Cancer  Empowered discussion board.	Women sought emotional and informational support  about prophylactic oophorectomies. Online  exchange generated sense of trust and feeling of  being in control during BC treatments.
Breast and lung: Lu et al.34	Patients with chronic conditions (cancer or  diabetes), caregivers, and a few providers	Determine (by text clustering method) differences in  interesting topics among different types of disease  discussion boards (BC, lung cancer, diabetes) on  Medhelp.org.	BC discussion boards were more likely to discuss  examinations; lung cancer boards focused more  on symptoms. BC patients discussed  complications less often than lung cancer and  diabetic patients.
Colorectal: Beusterien et al.14	Patients with advanced cancer	Explore impact of CRC treatments in patient Web  forums.	Common themes were treatment side effects,  impact on life, and emotional distress. Emotional  impacts exemplified resilience and positive coping  strategies.
General
Buis and Whitten15	Unknown	Determine how social support content in online  support communities (Association of Cancer  Online Resources and Yahoo!) for different cancers  varies according to cancer survival rate.	Emotional support was more common than  informational support. Communities with high  survival rates had more emotional support  content; those with lower survival rates had more  informational support content.
Love et al.31	Young adults with cancer	Understand patients’ exercise and nutrition habits,  identify needs, and assess how notion of works  helps define their efforts.	Nutrition and exercise needs affected illness  trajectories, including management of illness,  everyday life, and biographical and  communication work.
Love et al.32	Adolescents and young adults with cancer	Identify topics discussed in an online forum.	Themes were exchanging support, coping, describing  experiences, enacting identity, and communicating  membership.
Love et al.33	Young adults with cancer	Describe topics, needs, and concerns related to  nutrition and exercise posted on an online young  adult cancer forum.	Participants described several functions achieved  through nutrition and exercise: fighting cancer,  losing weight, obtaining nutrients despite  treatment, promoting general health and mental  health, and enjoyment.
Schultz et al.38	Cancer patients and caregivers	Review traffic to University of Texas MD Anderson  Cancer Center Web site and message board.	Most posters (60%) were cancer patients. Of  nonpatients, 22% were spouses and 69% were  family members of cancer survivors. BC patients  most often posted about treatment, and lung  cancer patients most often posted about support.
Street et al.44	Predominantly White, middle-aged Australian men  and women.	Examine value of facilitated telephone and online  support groups for palliative care.	Participant narratives focused on dying with dignity  or on deferring discussion of death/dying to focus  on the present. Participants reported these forums  to be safe and accessible.
Video-sharing sites
Cervical: Ache and Wallace53	Unknown	Analyze how YouTube videos portray HPV  vaccination.	YouTube videos more often positively portrayed HPV  vaccine.
General: Chou et al.54	Cancer survivors	Describe authentic personal cancer stories through  a linguistically based narrative analysis of YouTube  videos.	Common themes were orientation of being  diagnosed with cancer, series of complicating  actions after diagnosis, evaluation of cancer  diagnosis, results and resolution of diagnosis  event.
Rhabdomyosarcoma: Clerici et al.55	Adolescent cancer survivors and parents of living  and deceased pediatric cancer patients	Investigate availability and content of YouTube  videos about pediatric neoplastic diseases  (rhabdomyosarcoma and soft tissue sarcoma)	Of 149 videos analyzed, 25 were considered useful.  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.
Prostate: Steinberg et al.56	Unknown	Analyze PC videos on YouTube for information  content and bias.	Search found 14 videos on PSA, 5 on radiotherapy,  and 32 on surgery; 73% had fair or poor  information content. Bias for surgery, radiotherapy,  or PSA testing present in 69%; none were biased  against treatment or PSA testing.
Blogs
Breast, colorectal, Hodgkin lymphoma, ovarian,  sarcoma, and melanoma
Keim-Malpass and Steeves51,a	Late adolescent and young adult women	Analyze cancer patients’ online illness blogs.	Themes were living in the middle between sick and  healthy/living and dead, establishing a new  normal, urgency and transition into the unknown.
Keim-Malpass et al.49	Late adolescent and young adult women	Examine complementary therapy use described in  online cancer blogs.	Themes were awakening (understanding the new  normal), establishing new identities (that  incorporated loss), the good stuff in life, and  release.
Keim-Malpass et al.50	Late adolescent and young adult women	Analyze cancer survivor blogs.	Themes were pain and fatigue, insurance and  financial barriers, infertility, and post-traumatic  symptoms (including anxiety).
General: Kim and Gillham52,a	Women and men aged 20–29 y	Explore experiences of and better understand  cancer patients through PlanetCancer.org blogs.	Themes were physical burdens, future prospects,  isolation (physical and psychological), guilt,  mortality, images of cancer, creating a positive  attitude, health care, online social interaction,  and cancer survivorship.
Microblog
Cervical and breast: Lyles et al.69	Unknown	Ascertain whether cervical cancer and BC screening  is discussed on Twitter, whether sufficient volume  exists for meaningful analysis, and nature of  content.	Study coded 203 Pap test and 271 mammogram  messages (> 75% from individual accounts);  ~25% of messages discussed personal  experiences (attending appointments, negative  sentiments about procedure, results); 8% of Pap  test and 18% of mammogram messages promoted  screening.
General: Sugawara et al.70	Japanese men and women	Examine recent Twitter usage to evaluate role in  lives of today’s wired cancer patients.	Most tweets focused on greetings, treatment  discussions, and other psychological support.
Social bookmarking sites
Prostate: Friedman et al.67,b	Older adult African American men	Examine content of articles related to PC screening  information tagged on 4 major social bookmarking  sites.	Most articles did not discuss screening guidelines  for high-risk individuals; > 50% of the sites  reviewed also encouraged individuals to seek more  information about PC or cancer screening.
Social networking site
Breast: Bender et al.58	Unknown	Characterize purpose, use, and creators of  Facebook groups related to BC.	Groups most often created to raise funds, raise  cancer awareness, or promote external BC-related  Web sites.
Multiple channels
Breast: Quinn et al.75	Unknown	Assess daily new BC-related posts on the Internet.	BC-related topics had significantly more posts/  d than others. Most posts were on media sites.  Accuracy levels were high, but significantly lower in  posts on blogs or discussion forums. Anonymous  posts were common and less likely to be accurate.  Use of discussion forms increased over past 5 y.
Colorectal and breast: De la Torre-Díez et al.71	Unknown	Characterize purpose and use of Facebook and  Twitter groups concerning CRC, BC, and diabetes.	Search found 216 BC groups, 171 CRC groups, and  527 diabetes groups. CRC and BC groups mostly  focused on prevention, diabetes groups on  research.
Prostate: Sillence and Mo76	Young adult and midlife men	Explore types of decision-making processes users  exposed to on PC online message boards.	Many messages (49.6%) reported nonsystematic  decision processes, most often deferral to doctor  and proof of cancer removal. For systematic  processing (36.5%), messages mostly considered  treatment outcomes and side effects. Processes  did not vary between blogs and online forums.

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.

^aArticle references Internet access digital divide.

^bArticle references cancer health disparities.

TABLE 2.

Social Media Cancer Studies With Descriptive Designs and Various Foci

Measurement	Type of Cancer (Study)	Participants	Social Media Platforms/Study Goals	Key Findings
Online survey	General (Seckin40)	Adult cancer survivors	Examine whether online self-help group  interactions encourage patients’ sense of  control over their illness and lead to  higher satisfaction with health status.	Online support increased perception of  control over cancer, which led to higher  levels of satisfaction with health status.  Individuals with less education and lower  income levels reported more benefits  from electronic coping support.
	Breast (Kim et al.28,a)	Medically underserved African American  and White women with BC	Use online support groups (CHESS) to  examine interplay between emotional  support giving and receiving and the  effects of emotional support giving and  receiving on patients’ psychosocial  health outcomes.	Those receiving high social support were  less likely to have BC concerns and more  likely to reframe their problems positively  as well as to adopt positive strategies for  coping.
	Breast (Tercyak et al.43)	Adult partners (male and female) of  women at risk for hereditary BC	Understand the role of a Web-based  message board and chat in meeting  psychoeducational needs among  partners of hereditary BC survivors.	Partners had a moderately high need for  psychoeducational interventions across  content areas. Partners tended to prefer  printed self-help and interactive online  resources.
	Skin (Hawkins et al.23)	Adult patients and parents of children with  xeroderma pigmentosum	Use online support group to recruit  participants to complete a survey on  symptoms and QOL.	All participants reported positive effects on  lifestyles and QOL from participation in  online support group.
	Colorectal (Hwang et al.24)	Older adult cancer survivors	Assess the acceptability of narratives to  promote CRC screening among members  of an online weight loss community  (sparkpeople.com).	Among members who were up to date with  CRC screening, 39% were interested in  sharing narratives. This positively  correlated with African American race  and negatively correlated with age,  marital status, and CRC worry.
	Testicular (Bender et al.11,b)	Canadian young adult male cancer  survivors	Examine met or unmet support care needs  of survivors and their use of Internet,  social media, and online communities.	Participants had more met than unmet  needs; 62.5% had ≥ 1 unmet need. Most  respondents (76%) used social media  and 26% had used an online support  community. Social media users were  more likely to speak English as a first  language and to have unmet needs.
Survey and content analysis	General (Fernsler and Manchester9)	Adult cancer survivors	Use forum to post cancer-related  information.	Respondents used the cancer forum to  connect with others sharing similar  cancer experiences, to seek information,  to encourage other survivors, and to seek  emotional support
	Breast (Weinberg et al.8)	Adult BC patients	Investigate the use of online message  boards that emotional and informational  support.	Participants logged in to the BC bulletin  board 158 times. Online approach was  similar to face-to-face support groups.  Participants discussed medical  condition/treatment, shared personal  experiences and concerns, and offered  support for other members.
Survey and in-depth interviews	Breast (Bender et al.13)	Canadian adult BC survivors	Explore the role of online communities  from the perspective of survivors who are  face-to-face support group facilitators.	Online communities were used by 31.5%  of participants, mostly during cancer  treatment, for information, symptom  management, and an emotional outlet to  address unmet needs during periods of  peak stress or uncertainty.
Survey and Web metrics	Breast (Han et al.22,a,c)	Medically underserved African American  and White women with BC	Explore the social and psychological  characteristics that predict different  levels of engagement on an online BC  support group message board (CHESS).	Many women do not use online support  groups. Of participants, 44.6% posted  messages, 32% lurked on the sites, and  23.4% did not log in to the system.  Women who posted were more often  were younger and lived alone. Nonusers  and lurkers had significantly more social  support than those who posted online.
Social network analysis	General (Durant et al.20)	Patients, caregivers, researchers, and  providers	Determine whether gender-preferred social  styles can be observed in user  interactions in an online cancer  community.	Men preferred to socialize in large, less  intimate groups. Women were more likely  to form a highly intimate bond on  a women-specific cancer forum.
Focus groups and content analysis	Breast (Lieberman and Goldstein30)	Adult BC patients	Examine emotions expressed by women  participating in online bulletin boards.	Expression of negative emotion did not  predict psychosocial improvement.  Expression of fear and anxiety was  associated with lower QOL and with  depression.
In-depth interviews and content analysis	Breast and prostate (Seale39)	Adult cancer survivors	Compare interviews and Internet postings  involving people with BC and PC and  discussion of sexual health.	Patients who disclosed information on the  Web forum provided more detailed  health and sexual health information  online than during in-depth interviews.
Blogs
Interviews	General (Andersson et al.47)	Swedish adult relatives of cancer patients	Highlight relatives’ experiences of blogging  when a family member is in the end-oflife  phase of cancer.	Themes were delivering information about  cancer, vulnerability in writing the blog,  sensitivity of information, not knowing who  viewed the blog, blogging to ease burden of  cancer, and blogging to build strength.
Focus groups	General (Chiu and Hsieh48)	Adult cancer patients and caregivers	Explore how cancer patients’ posting on  and reading blogs, social networking  sites, and online support groups play  a role in their illness experience.	Themes were wanting to be remembered  after death, writing for relief and gaining  strength, writing to support fellow  patients, influence of other cancer  patients, finding other survivors, and  a sense of belonging.
Survey	General (Chung and Kim46)	Adult cancer patients and their  companions	Examine use of blogs related to  gratification outcomes.	Four areas emerged as gratifications of  blog use: prevention and care, problem  solving, emotion management, and  information sharing. Participants found  blogging most helpful for emotion  management and information sharing.
Microblog
Social network analysis	Breast and prostate (Himelboim and  Han68)	Unknown	Assess density and interconnectedness of  social networks of individuals who post  information on Twitter about BC and PC.	Authors categorized groups who frequently  posted about BC and PC as core  communities and groups who more  sporadically discussed these cancers as  visiting communities. The different types  of communities exhibited distinct  patterns of information flow, information  sources, and user interactions.  Regardless of group classification,  communities that discussed BC were  significantly larger than PC communities.  Visiting communities were not common  in BC clusters but played an integral role  in PC clusters.
Social networking sites
Survey	Cervical (Zaid et al.65,b)	Women with history of small- or large-cell  cervical cancer	Determine feasibility of posting a survey on  Facebook for epidemiological and QOL  research.	Use of social media for epidemiological  and QOL research with patients with rare  gynecologic tumors appeared feasible.  Social media permitted research to be  conducted efficiently and rapidly.
	Cervical (Gunasekaran et al.59)	Young adult women in Australia	Assess and investigate predictors of  cervical cancer and HPV knowledge  among participants recruited on  Facebook	Most respondents (> 50%) knew that HPV  is a common virus. Predictors of high  HPV knowledge were older age, higher  SES, Australian birth, older at sexual  debut, awareness of HPV vaccines, selfreported  HPV vaccination status.
	Breast (Kapp et al.60)	Women aged 35–49 y	Assess feasibility of recruiting cancer  patients via Facebook.	Few women (3.2%) clicked on ad and  proceeded to survey; none completed  survey.
	Colon and skin (Leighton et al.61,b)	Young adults and adult genetic counselors	Recruit participants via Facebook to  participate in study of perceptions and  understanding of direct-to-consumer  genetic testing.	General public and genetic counselors  differed significantly in interpretation of  genetic test results in 3 of 4 chronic  disease mock scenarios.
Multiple channels
Web metrics	General (Justice-Gardiner et al.72,a,c)	Racially and ethnically diverse populations	Use blogs, microblogs, and social  networking sites to increase awareness of  and access to existing Spanish-language  cancer resources for cancer survivors.	Web site traffic increased in all areas from  2008 print and radio campaign to 2009  campaign with the addition of social  media.
	Osteosarcoma (Lam et al.73,b)	Unknown	Assess quality, readability, and social  reach of blogs, YouTube, Facebook, and  social bookmarking sites used to post  information on pediatric osteosarcoma.	Only 12.5% of social media included  adolescent-specific content. Only 1 Web  site achieved readability targets and  provided adolescent-specific content.
Survey	Breast (Paxton et al.74,a,c)	Adult African American BC survivors	Use social networking (blog, Facebook,  Twitter) recruitment to determine  physical activity intervention preferences  and whether preferences differ by  medical or demographic factors.	Participants were interested in  interventions that used the Web, e-mail,  or postal mail to promote walking and  resistance activities. Intervention  preferences did not differ by medical or  demographic factors.
Survey	General (Song et al.63)	Racial and ethnic minority young adult  cancer survivors	Explore cancer survivor identities and how  these are associated with internalized  stereotypes about survivorship and  psychological health on a social  networking site and video blog for cancer  survivors (LIFECommunity).	Survivors of childhood cancer did not  publicly dwell on cancer stereotypes  when discussing their experiences with  each other. Survey found evidence for  internalizing positive and negative  stereotypes. Self-perceived negative  stereotypes were positively associated  with depression.
Frequencies of study enrollment	General (Rabin et al.62)	Young adult cancer survivors	Assess various strategies to recruit  participants for for pilot intervention,  including use of Facebook and Twitter.	Most participants were recruited from  mailings. Internet and social media  recruitment accounted for 15% of study  contacts, 7% of those screened, and no  enrollees.

Note. BC = breast cancer; CRC = colorectal cancer; HPV = human papilloma virus; PC = prostate cancer; QOL = quality of life; SES = socioeconomic status.

^aArticle references Internet access digital divide.

^bArticle references health literacy.

^cArticle references cancer health disparities.

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 design^19,29,36,64 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

TABLE 3.

Social Media Cancer Intervention Studies

Channel/Type of Cancer	Study	Participants	Social Media Platforms/Study Goals	Key Findings
Virtual world: breast	Andrade et al.66	Male, 62%; female, 38%; mean age, 29 y;  White, 50%; Hispanic, 38%; Asian, 12%	Study feasibility of creating standardized  patient avatars in Second Life to use in  training physicians to deliver bad news.	Self-efficacy affective competence scores of  trainees improved overall. All participants  considered the experience positive and  novel, although avatars were not able to  portray body language cues.
Online forum  Gynecologic	Classen et al.18	Women; age range, 28–59 y; White, 74%;  Asian, 11%; African American, 8%; Hispanic,  7%	Feasibility study to examine participation  rates and preliminary outcomes for an  online support group (GyneGals) designed  specifically for women who are sexually  distressed subsequent to gynecologic  cancer treatment.	Participation was higher in wait-listed control  group than in immediate treatment group.  Exit interviews indicated that most  participants were satisfied with intervention.  Intent-to-treat analyses suggested a small  effect for reduction in sexual distress.
General	Duffecy et al.19	Female, 87%; male, 13%; mean age, 50 y;  White, 87%; African American, 10%; Asian,  1%; Hispanic, 10%	Examine feasibility and acceptability of  individual Internet intervention for posttreatment  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.	Mean number of logins over 8 wk: Onward  group, 20.8; individual intervention–only  group, 12.5. Onward group had fewer  dropouts than individual intervention–only  group (3 vs 5). Among participants with  depressive symptoms at baseline (n = 17 for  both groups), hospital anxiety and  depression decreased significantly.
Breast	Klemm29	Women; mean age, 52.3 y; White, 90%;  African American, 10%	Evaluate effects of different formats of online  group support (moderated vs peer led) on  depressive symptoms and extent of  participation among women with breast  cancer.	Depressive symptoms did not differ  significantly by group or over time or  demonstrate a group-by-time interaction.  Moderated groups read and posted  significantly more messages than peer-led  groups.
Prostate	Osei et al.36	Men; mean age, 67.2 y; White, 85%; African  American, 7.5%; Hispanic, 5.0%	Explore effect of an online support group (Us  TOO) intervention on self-reported QOL.	From baseline to 6 weeks, intervention group  improved in 3 of 6 QOL measures (urinary,  sexual, and hormonal health); 6 QOL  measures declined in control group. Both  groups returned to baseline levels at 8 wk.
Multiple channels (social networking and  video sharing): general	McLaughlin et al.57,a	Male, 64.3%; female, 35.7%; Hispanic,  85.7%; Asian, 7.1%; Native American, 7.1%	Examine key factors that may influence  a childhood cancer survivor’s participation  in a social networking and video-sharing  intervention (LIFEcommunity) tailored to  their social support, social capital, and QOL  needs.	Bridging social capital of participants was  positively related to level of participation,  sharing videos, more frequent visits to other  participants’ walls, exchanging information  and empathy support through sending and  receiving private messages. Decreased  levels of real-life support were linked to  increased levels of online participation.  Participants with more family support were  less likely to participate in the social  networking program. A higher depression  level correlated with more activity in blog  posting.
Social networking site: general	Valle et al.64,b,c	Female, 91%; Male, 9%; mean age, 32 y;  White, 91%; African American, 9%;	Evaluate feasibility and efficacy of Facebookbased  intervention to increase physical  activity; compare with a Facebook-based  self-help comparison condition.	Intervention participants lost weight and  engaged in more weekly minutes of light  physical activity than did control group.  Groups did not significantly differ in weekly  minutes of moderate vigorous physical  activity.

Note. QOL = quality of life.

^aArticle references health literacy.

^bArticle references cancer health disparities.

^cArticle references Internet access digital divide.

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; 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 osteosarcoma-related 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 cancer-related 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. 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 cancer-related 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 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 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 meta-analysis 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 cancer-related 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.

Examples of Social Media and Other Types of Electronic Communication

Social Media	Not Social Media
Blogs	E-mail
Microblogs	Listserv
Social networking sites	Regular Web page
Social bookmarking sites	Prerecorded podcast
Online support groups (online forum)
Online message boards (online forum)
Video-sharing sites
Photo-sharing sites
Virtual worlds
Wikis
Some forms of online games