Is Cancer Information Exchanged on Social Media Scientifically Accurate?

Abstract

Cancer patients and their caregivers are increasingly using social media as a platform to share cancer experiences, connect with support, and exchange cancer-related information. Yet, little is known about the nature and scientific accuracy of cancer-related information exchanged on social media. We conducted a content analysis of 12 months of data from 18 publically available Facebook Pages hosted by parents of children with acute lymphoblastic leukemia (N = 15,852 posts) and extracted all exchanges of medically-oriented cancer information. We systematically coded for themes in the nature of cancer-related information exchanged on personal Facebook Pages and two oncology experts independently evaluated the scientific accuracy of each post. Of the 15,852 total posts, 171 posts contained medically-oriented cancer information. The most frequent type of cancer information exchanged was information related to treatment protocols and health services use (35%) followed by information related to side effects and late effects (26%), medication (16%), medical caregiving strategies (13%), alternative and complementary therapies (8%), and other (2%). Overall, 67% of all cancer information exchanged was deemed medically/scientifically accurate, 19% was not medically/scientifically accurate, and 14% described unproven treatment modalities. These findings highlight the potential utility of social media as a cancer-related resource, but also indicate that providers should focus on recommending reliable, evidence-based sources to patients and caregivers.

Pilot study of Australian veterinarians and their perceptions and experiences related to online pet health information

“…Social media sites clearly influence people's health‐related perceptions and offer powerful tools for improving the health of both people and animals. Yet these sites, and their lack of gatekeepers, can also misinform people about both human and animal health‐related topics . The open‐ended questions in the current study illustrate both the potential benefits and pitfalls of social media for accessing health‐related topics.…”

“…Yet these sites, and their lack of gatekeepers, can also misinform people about both human and animal health-related topics. [13][14][15] The open-ended questions in the current study illustrate both the potential benefits and pitfalls of social media for accessing health-related topics. A relatively new line of research in human medicine in which social media is utilised to correct misinformation 15 might be of benefit to veterinary medicine as well.…”

Age differences in patterns and confidence of using internet and social media for cancer-care among cancer survivors

“…With an increasing number of investigations (i.e., genomic and tumor molecular profiling studies) and treatment options (i.e., clinical trials) available for cancer-care and a growing population of cancer survivors, accessing cancer-related online health information is expected to rise [39,40]. Patients will often consult additional sources of information other than their health care providers [41], raising concerns of patient misinterpretation of online information, information accuracy, and false information being exchanged on social media and the internet [2,42,43]. Oncology healthcare providers are in a unique position given their relationship with patients to help guide them on medical decision making and interpreting online information.…”

Harnessing social media data for pharmacovigilance: a review of current state of the art, challenges and future directions

“…Health information posted online by patients is in abundance and is often publicly available, thus representing an untapped source of post-market safety data that could supplement data from existing sources of medicine safety information [22,156]. For example, the study by Gage-Bouchard et al [23] on cancer information exchanged on personal Facebook Pages revealed that this information predominantly related to treatment protocols and health services use (35%), followed by information related to side effects and late effects (26%) and medication (16%).…”