Patient engagement is a symbiotic relationship between patients and health care professionals to “promote and support active patient and public involvement in healthcare and strengthen their influence on healthcare decisions, at both the individual and collective levels.”^6(p110) A systematic review of 170 studies of patients' use of information technology and patient engagement found that 89% of studies demonstrated a positive impact on health behavior (eg, increased weight loss in an Internet-based weight control program) and 83% reported improvements in patient engagement (eg, a text messaging system enhanced the access of patients with diabetes to their clinical data).⁷ SM provide a space to mentally process and reflect on the cancer experience. Empowered patients are more likely to attend regular check-ups and screenings and to receive immunizations.⁸ They are also more likely to have reduced body mass index, blood pressure, and cholesterol values than are those who are less active.⁸ Health care professionals have also developed successful SM pages specifically for patient engagement.⁹

Psychosocial support buffers cancer-related distress.¹⁰ Adequate social support is correlated with better physical and mental health–related quality of life.¹¹ Larger social support networks are also associated with better prognosis after breast cancer treatment, whereas social isolation is associated with higher all-cause mortality. Social isolation was associated with lower rates of physical activity and with obesity, smoking, and excessive alcohol use, all factors deleterious to health.¹² Those without significant, in-person support systems can use SM communities to gather social support for coping with their diagnosis,¹³ and individuals are able to comfort themselves through reduced social isolation.¹⁴ SM can also be used to discuss emotional, spiritual, and physical treatment barriers, including inadequate resources, lengthy treatment processes, negative health care perceptions, and difficult personal relationships.¹⁵ Shim et al¹⁶ found that those who disclosed personal insights about breast cancer in an online support group experienced greater health self-efficacy and emotional and functional well-being. Users of a Twitter breast cancer support group also reported decreased anxiety after tweet chats.⁴ However, these examples of breast cancer support groups may not be generalizable. Randomized studies are needed to further systematically investigate the impact of SM on psychosocial health outcomes.

Online communication can overcome the barriers of traditional, in-person cancer support groups, such as employment, family responsibilities, poverty and transportation issues, and lack of time and energy.¹⁷ Some online communities encourage a regular presence, but in many cases, there is little expectation to make a formal commitment. Users can post and/or reply to connections as frequently as is convenient and comfortable for them. Furthermore, the expansiveness of SM can locate others to empathize on a level that one may be unable to find otherwise. For example, SM-proficient cancer survivors can find others with similar personal or demographic characteristics (eg, disease site, disease stage, age, sex, treatment program) across the country and the world. This can be particularly helpful for the geographically isolated and/or those with rare diagnoses.¹⁸

SM can help locate cancer information. Seventy-two percent of adult Internet users have searched for health information online,¹⁹ and in a survey of 1,745 adults, 31.6% used SM for health information.²⁰ Because of the brief nature of most SM posts (eg, Twitter’s 280-character limit), it is possible to consume information quickly on many topics. Incidental learning occurs when users come across information indirectly. For example, a breast cancer survivor searching treatment options with the Twitter hashtag #BreastCancer may inadvertently come across information for an online breast cancer support group. SM can also potentially promote health literacy with brief, straightforward content for all reading levels, but additional research is needed. Existing research indicates that low health literacy is associated with a reduced ability to evaluate online health information.²¹ However, videographic SM platforms (eg, YouTube) convey information visually and through spoken language, which may overcome literacy barriers. SM can also distribute messages about cancer prevention and screening to diverse communities to reduce health disparities.²² It should be noted, however, that low socioeconomic status is a barrier to technology and Internet access.^23,24

Although patients should not use SM to contact their personal physicians, SM for health-related information can increase confidence in relationships with physicians and lead to more equal communication.²⁵ Seeing physicians share trustworthy cancer-related information on SM may improve patients’ impressions of the medical community and may lead to enhanced trust in their own physician. Twitter Tweetchats (ie, prearranged virtual discussions moderated and focused on a specific topic) have evolved into a variety of online oncology communities for breast cancer (#BCSM), gynecologic cancer (#GyncSM), lung cancer (#LCSM), and others, allowing patients to connect with physicians.⁵ The hashtag (#) categorizes information about a specific topic together, which allows other Twitter users to find and follow its content.

SM can effectively inform patients about clinical trials, especially SM-savvy young survivors.²⁶ Some believe that study accrual barriers including low resources, difficult-to-access populations, and low participant interest can be ameliorated by widespread, affordable SM advertising.²⁷ Patients with rare diseases can join SM groups specific to their diagnosis where study recruiters share upcoming clinical trial and other research opportunities.¹⁸ Individuals may locate research opportunities of which their oncologist is unaware, and then discuss them with the care team to determine if participation is appropriate.

Social support from SM ranges from infrequent and unstructured to regularly scheduled formal online support groups. SM may provide adequate support in some circumstances and not in others. For example, people with depression sometimes express their distress online,²⁸ yet may not reveal their condition to someone in person, which could hinder treatment. SM use may also become impulsive and may interfere with positive social interactions offline.²⁹ To our knowledge, no studies have explored the efficacy of online support in cancer survivors with various levels of in-person support. There is, however, research about the efficacy of online support groups versus in-person groups. One study found that emotional support and insight was higher in person than online.³⁰ Huber et al³¹ compared face-to-face with online support groups for prostate cancer and found that across both modalities, experiences were rated positively and there were no significant differences in anxiety, depression, and quality-of-life measures. On average, those in the online groups were younger, had higher incomes, and experienced greater distress. Again, these findings may not be generalizable to other disease sites. Online groups are used more often by those unable to attend in-person groups, whereas the latter are preferable for culture-specific discussions.³² Therefore, it may be important to consider how sociodemographic characteristics may affect the desire to use online groups.^27,31 To our knowledge, no studies with representative cancer populations exist to examine the efficacy of social support gained through SM.

The trustworthiness and quality of online health information can be unreliable and should not be a substitute for professional medical advice; rather, it should be considered a starting place to collect information that can later be discussed with the care team. Many sources provide medically inaccurate, incomplete, and inadvisable treatment options and advice.^33,34 Patients may even use online information to attempt to justify nonadherence to professional medical recommendations.³⁵ Although sources with characteristics indicative of untrustworthy information can be avoided, it is difficult to define dependable criteria for trustworthiness. Bernstam et al³⁴ found that a systematic assessment of Web sites with 15 quality criteria and three Web site characteristics did not reliably predict if a Web site contained inaccurate breast cancer information. Consumers must also be aware that information shared by seemingly trustworthy entities could represent conflicts of interest (eg, a physician influenced by the pharmaceutical industry tweets about a particular drug).³⁶ Thus, it is best to approach health information from SM with a degree of skepticism and to consult a physician about its validity. Physicians may also be unable to identify advice arising from conflicts of interest because they are seldom disclosed. Individuals must also be aware that SM posts about medical professionals or services that are false or inflammatory may have personal legal consequences. Such statements could result in lawsuits for libelous or defamatory statements.³⁷

SM users must be aware of those with financial motives who target vulnerable cancer populations online with unproven cancer cure claims. Examples include high-dose vitamin and mineral supplements, special diets, oxygen therapies, shark cartilage supplements, and many others.³⁸ Such treatments have not been evaluated by the Food and Drug Administration and may be harmful. Medical advertisements shared via SM may also create false hopes³⁹ or attempt to lure individuals into unnecessary and expensive procedures and treatments.

A burgeoning issue for many patients with cancer in the digital age is the attempt to make sense of large amounts of medical information. They seek information from their health care team, personal social networks, Web sites, blogs, books, pamphlets, podcasts, news sources, and more. Too much information is associated with anxiety about being unable to comprehend the amount of information and use it effectively to make decisions. This is known as information overload.⁴⁰ Jensen et al⁴⁰ developed a cancer information overload scale to measure this phenomenon. Greater information overload is found with lower socioeconomic status.⁴¹ Information overload also has the potential to cause discussion of unverified SM information at length during clinic visits, thereby disrupting allocated clinical time for standard medical consultations.

SM users may compromise their privacy. For example, individuals may choose not to disclose their diagnosis among in-person social networks including family members, friends, and colleagues. However, SM are public forums, and notwithstanding privacy settings, an individual’s diagnosis may be revealed inadvertently by an SM post.⁴² Similarly, seemingly anonymous SM posts may easily identify individuals on the basis of characteristics such as age, disease type, sex, and geographic location.

The most effective way for professionals to become acquainted with the potential benefits and drawbacks patients may experience is to explore cancer-related SM themselves. The percentage of oncologists who use SM professionally is unclear. One national survey of Canadian oncologists and oncology trainees found that 72% of respondents used SM.⁴³ When SM were used professionally, 55% used them to network, 17% for research, and 13% for leadership development. Only three of 207 respondents used it to interact with patients.⁴³ SM participation allows medical professionals to see content to which their patients are exposed. One way to help improve the quality of online information is for oncologists and other medical professionals to create trustworthy content. Physician participation in tweetchats such as #BCSM, #GyncSM, and others may help disseminate reliable, valid information and correct misinformation or misperceptions. Intentional contributions to cancer information on platforms such Facebook and Twitter may aid in establishing oneself as a trustworthy source for medical information.⁴⁴ Participation in SM may also cultivate trust and strengthen the patient–physician relationship. In addition, SM platforms present an opportunity for health care practitioners to provide education outside medical settings.

Oncologists who are knowledgeable about SM may consider a conversation with patients about their SM use to help them experience the potential benefits and avoid the drawbacks of SM. To begin the conversation, oncologists could ask, “Have you ever used Facebook, Twitter, an online community or something similar to look for information about or connect with other people with cancer?” The answer may indicate whether the patient is a sophisticated SM user, would like to learn more about SM in relation to their cancer, has had negative experiences, or is completely uninterested. Patients’ level of openness to discussing their health in online communities will allow the oncologist to counsel appropriately.

For those interested in SM for cancer-related purposes, oncologists can briefly detail the benefits discussed previously. The features of SM about which to be cautious, including misinformation, information overload, compromised privacy, financial exploitation, unscrupulous medical professionals trolling for new patients, and being targeted for unproven treatments, should be emphasized. Oncologists may recommend certain dependable SM platforms or online resources. Above all, the oncologist should clearly communicate that although SM can be helpful, they should not be considered a substitute for the care team’s advice. Table 1 provides resources that oncologists are encouraged to explore to learn more about best practices when using SM, and specific tips to share with patients.

Table 1. ASCO Social Media Resources

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Medical professionals must be aware of the privacy risks inherent in SM and set boundaries to reduce these risks.⁴⁷ They should refrain from dispensing medical advice to any patient and avoid communicating with their own patients via SM. SM communication should omit identifiable photographs, names, and other details (eg, specific care plan, sex, geographic location, and so forth) of patients. Even with precautions, medical privacy remains a challenge. Among 271 medical blogs by health care professionals, 42% contained descriptive individual patient information and 17% were descriptive enough to identify individual patients.⁴⁸ Physicians are responsible for breaches in privacy and can be held legally responsible for violation of the federal Health Insurance Portability and Accountability Act and state privacy laws.⁴⁹

SM as a mechanism to cope with cancer has gained popularity, yet there is little scholarship devoted to how oncologists can guide their patients in its use. We encourage oncology care professionals to understand the potential benefits and drawbacks and to guide individuals about SM for cancer-related purposes. SM can be beneficial for empowerment and engagement in the cancer experience, psychosocial support, quick and wide distribution of information, enhancement of relationships between patients and medical professionals, and advertisement of cancer research opportunities. However, they also have their drawbacks, which include failing to provide a substitute for in-person social connection, spreading misinformation, causing consumers to become overwhelmed by voluminous content, violating privacy, and advertising ineffective cancer therapies to users. Oncology professionals are encouraged to speak with their patients about SM and to suggest best practices to enjoy the positive and circumvent the negative aspects of SM. As SM platforms continue to modify the social landscape, the oncology community must recognize and act on their influence on patients with cancer.

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jop/site/ifc/journal-policies.html.

No relationship to disclose

Consulting or Advisory Role: Astex Pharmaceuticals

Research Funding: Astex Pharmaceuticals (Inst), Aduro Biotech (Inst)

Research Funding: Eli Lilly (Inst)