Dimensions of Misinformation About the HPV Vaccine on Instagram: Content and Network Analysis of Social Media Characteristics.

BACKGROUND: The human papillomavirus (HPV) vaccine is a major advancement in cancer prevention and this primary prevention tool has the potential to reduce and eliminate HPV-associated cancers; however, the safety and efficacy of vaccines in general and the HPV vaccine specifically have come under attack, particularly through the spread of misinformation on social media. The popular social media platform Instagram represents a significant source of exposure to health (mis)information; 1 in 3 US adults use Instagram. OBJECTIVE: The objective of this analysis was to characterize pro- and anti-HPV vaccine networks on Instagram, and to describe misinformation within the anti-HPV vaccine network. METHODS: From April 2018 to December 2018, we collected publicly available English-language Instagram posts containing hashtags #HPV, #HPVVaccine, or #Gardasil using Netlytic software (n=16,607). We randomly selected 10% of the sample and content analyzed relevant posts (n=580) for text, image, and social media features as well as holistic attributes (eg, sentiments, personal stories). Among antivaccine posts, we organized elements of misinformation within four broad dimensions: 1) misinformation theoretical domains, 2) vaccine debate topics, 3) evidence base, and 4) health beliefs. We conducted univariate, bivariate, and network analyses on the subsample of posts to quantify the role and position of individual posts in the network. RESULTS: Compared to provaccine posts (324/580, 55.9%), antivaccine posts (256/580, 44.1%) were more likely to originate from individuals (64.1% antivaccine vs 25.0% provaccine; P<.001) and include personal narratives (37.1% vs 25.6%; P=.003). In the antivaccine network, core misinformation characteristics included mentioning #Gardasil, purporting to reveal a lie (ie, concealment), conspiracy theories, unsubstantiated claims, and risk of vaccine injury. Information/resource posts clustered around misinformation domains including falsification, nanopublications, and vaccine-preventable disease, whereas personal narrative posts clustered around different domains of misinformation, including concealment, injury, and conspiracy theories. The most liked post (6634 likes) in our full subsample was a positive personal narrative post, created by a non-health individual; the most liked post (5604 likes) in our antivaccine subsample was an informational post created by a health individual. CONCLUSIONS: Identifying characteristics of misinformation related to HPV vaccine on social media will inform targeted interventions (eg, network opinion leaders) and help sow corrective information and stories tailored to different falsehoods.

The impact of HPV vaccine narratives on social media: Testing narrative engagement theory with a diverse sample of young adults.

Rates of human papillomavirus (HPV) infection are highest in young adults, who can be vaccinated against HPV if they were not vaccinated as adolescents. Since young adults increasingly access health information on social media, we tested the impact of a social media campaign with narrative-based health information on intentions related to HPV vaccination. We also aimed to understand which ads resonated most with young adults and led to higher survey completion rates. We created social media posts featuring videos promoting HPV vaccination. We launched a sponsored ad campaign on Facebook to reach young women, ages 18-26, across the country. Participants were randomly assigned one of 6 videos and then completed a brief survey about video engagement and intentions to: talk with a health care professional, talk with friends or family, and vaccinate against HPV. A descriptive correlational design and a test for moderation were used to explore hypothesized relationships. Across all ads, 1332 link clicks led to 991 completed surveys that were reduced to 607 surveys (95 % ages 18-26, 63 % non-Caucasian; 58 % sexually active). Higher video engagement was associated with stronger intentions to talk with a health care professional (r = 0.44, p =.01), talk with friends/family (r = 0.52, p =.01), and vaccinate against HPV (r = 0.43, p =.01). Young adults were receptive to watching narrative-based health information videos on social media. When promoting HPV vaccination, more engaging information leads to greater intentions to talk about the vaccine and get vaccinated.

Exploring Knowledge and Attitudes About Human Papillomavirus Vaccination Among School Nurses in an Urban School District.

BACKGROUND: Nurses in an urban school district completed a brief survey about their knowledge, attitudes, and practices related to human papillomavirus (HPV) vaccination. METHODS: Descriptive and bivariate analyses examined trends and differences. RESULTS: Among 208 nurses, only 3% correctly answered all 5 knowledge questions. Nurses with greater than 10 years of experience were more confident about where to refer a student for vaccination (p < .01) and less likely to be interested in providing the vaccine at their school (p < .001) compared to those with less than 10 years of experience. Almost one third (32%) of nurses reported having access to educational material about the HPV vaccine at their schools. CONCLUSIONS: Whereas most nurses had positive attitudes about the vaccine, fewer were interested in administering the HPV vaccine in school. Educational resources for school nurses could increase awareness of the vaccine and promote linkages to care outside of school.

Engaging Patients with Late-Stage Non-Small Cell Lung Cancer in Shared Decision Making about Treatment.

Few treatment decision support interventions (DSIs) are available to engage patients diagnosed with late-stage non-small cell lung cancer (NSCLC) in treatment shared decision making (SDM). We designed a novel DSI that includes care plan cards and a companion patient preference clarification tool to assist in shared decision making. The cards answer common patient questions about treatment options (chemotherapy, chemotherapy plus immunotherapy, targeted therapy, immunotherapy, clinical trial participation, and supportive care). The form elicits patient treatment preference. We then conducted interviews with clinicians and patients to obtain feedback on the DSI. We also trained oncology nurse educators to implement the prototype. Finally, we pilot tested the DSI among five patients with NSCLC at the beginning of an office visit scheduled to discuss treatment with an oncologist. Analyses of pilot study baseline and exit survey data showed that DSI use was associated with increased patient awareness of the alternatives' treatment options and benefits/risks. In contrast, patient concern about treatment costs and uncertainty in treatment decision making decreased. All patients expressed a treatment preference. Future randomized controlled trials are needed to assess DSI implementation feasibility and efficacy in clinical care.

Gaps in Public Awareness About BRCA and Genetic Testing in Prostate Cancer: Social Media Landscape Analysis.

BACKGROUND: Genetic testing, particularly for BRCA1/2, is increasingly important in prostate cancer (PCa) care, with impact on PCa management and hereditary cancer risk. However, the extent of public awareness and online discourse on social media is unknown, and presents opportunities to identify gaps and enhance population awareness and uptake of advances in PCa precision medicine. OBJECTIVE: The objective of this study was to characterize activity and engagement across multiple social media platforms (Twitter, Facebook, and YouTube) regarding BRCA and genetic testing for PCa compared with breast cancer, which has a long history of public awareness, advocacy, and prominent social media presence. METHODS: The Symplur Signals online analytics platform was used to obtain metrics for tweets about (1) #BRCA and #breastcancer, (2) #BRCA and #prostatecancer, (3) #genetictesting and #breastcancer, and (4) #genetictesting and #prostatecancer from 2016 to 2020. We examined the total number of tweets, users, and reach for each hashtag, and performed content analysis for a subset of tweets. Facebook and YouTube were queried using analogous search terms, and engagement metrics were calculated. RESULTS: During a 5-year period, there were 10,005 tweets for #BRCA and #breastcancer, versus 1008 tweets about #BRCA and #prostatecancer. There were also more tweets about #genetictesting and #breastcancer (n=1748), compared with #genetic testing and #prostatecancer (n=328). Tweets about genetic testing (12,921,954) and BRCA (75,724,795) in breast cancer also had substantially greater reach than those about PCa (1,463,777 and 4,849,905, respectively). Facebook groups and pages regarding PCa and BRCA/genetic testing had fewer average members, new members, and new posts, as well as fewer likes and followers, compared with breast cancer. Facebook videos had more engagement than YouTube videos across both PCa and breast cancer content. CONCLUSIONS: There is substantially less social media engagement about BRCA and genetic testing in PCa compared with breast cancer. This landscape analysis provides insights into strategies for leveraging social media platforms to increase public awareness about PCa germline testing, including use of Facebook to share video content and Twitter for discussions with health professionals.

Exploring Asian Indian views about cancer and participation in cancer research: an evaluation of a culturally tailored educational intervention.

Asian Indians (AIs) are a growing population in the United States (US) with increased cancer incidence and mortality. However, screening rates among this population are low, and the population has been underrepresented in clinical research. This pilot study aims to address gaps in the literature in order to understand if a culturally tailored educational intervention will improve knowledge, risk perceptions, and awareness of cancer risk assessments among AIs. We delivered an educational intervention comprised of culturally tailored case studies describing risk factors for developing cancer in both males and females. We assessed knowledge gaps about cancer risk and genetic testing, cancer risk perceptions, and willingness to participate in medical research studies, pre- and post-intervention. Among 23 participants, knowledge of genetic testing use and screening recommendations significantly improved post-intervention, with increased willingness to discuss cancer with family members, participate in medical research, and undergo genetic testing for cancer risk assessment. However, findings at the 1-month follow-up time did not show significant changes, except for one knowledge item. Culturally tailored educational interventions, delivered in a community setting, can influence knowledge and risk perceptions about cancer risk and genetics among AIs. Our findings lay the groundwork to continue educational efforts in the area of cancer risk and genetic testing in the AI population, a growing population that has been understudied in the US.

Characterizing HPV Vaccine Sentiments and Content on Instagram.

Background. With its growing popularity, inclusion of image and text, and user-friendly interface, Instagram is uniquely positioned for exploring health behaviors and sources and types of informational exposure related to the human papillomavirus (HPV) vaccine. Aims. To characterize public Instagram posts about the HPV vaccine and quantify the impact of sentiment and context on engagement via likes. Method. Using Netlytic, 3,378 publicly available English-language posts were collected using the search terms "#HPV," "#HPVVaccine," and "#Gardasil." We randomly selected 1,200 posts to content analyze. Our final analytic sample included 360 posts after excluding posts whose links were no longer active (n = 221) or that were not relevant (n = 619). Results. A higher proportion of posts were pro-vaccine (55.8%) than anti-vaccine (42.2%). Pro-HPV vaccination posts were liked significantly less than anti-vaccination posts (24 vs. 86 likes; p < .001). More posts contained actionable information/resources (63.9%) than personal narrative elements (36.1%). Less than one in three posts (30.0%) came from health-related sources. Discussion. Pro-vaccine posts were more prevalent on Instagram, and anti-vaccine posts had higher engagement and typically included misleading information about the HPV vaccine. Personal narratives skewed toward anti-vaccine sentiments and most were produced by individual users. Pro-vaccine narratives portrayed individuals who received the vaccine, but provided limited details on vaccine experiences, starkly contrasting with the depth of details in anti-vaccine personal narrative posts. Conclusion. On Instagram, individuals and organizations have an opportunity to promote HPV vaccination by continuing to provide informational resources in addition to creating more narrative-style posts.

Exploring Asian Indian and Pakistani views about cancer and participation in cancer genetics research: toward the development of a community genetics intervention.

Cancer is a leading cause of mortality among the three million Asian Indian/Pakistanis (AIPs) in the USA. AIPs have traditionally been underrepresented in cancer-related research, although reasons remain largely unexplored. We sought to understand AIP's awareness and perceptions of cancer to improve their participation in risk assessment and cancer genetics research. Four focus groups, stratified by gender and birthplace (US-born vs. foreign-born), were held at an AIP cultural center. Discussions focused on knowledge and awareness of cancer risk; how AIP culture influences cancer perceptions; access to health care services for cancer screening, diagnosis, or treatment; and willingness to or experiences with participating in cancer genetics research. Sessions were audio-recorded, transcribed verbatim, and content analyzed using NVivo®11 for dominant themes. Thirty-two AIP adults participated in a focus group. Information on family cancer history is challenging to obtain due to the desire for privacy, cancer stigma, and loss of medical records. Interest in genetic testing for cancer risk was mixed: some were in favor of knowing their personal risk, yet many noted that future generations in their family would benefit more by knowing their risk. Participants felt that the AIP community has largely been overlooked in recruitment efforts for research studies. Recommendations for improving recruitment efforts included partnering with community events and festivities, posting culturally and linguistically relevant recruitment materials, and focusing on population-wide health improvement. Understanding the culture and perceptions of AIPs, separate from Asian Americans at large, will allow for more tailored approaches for including this population in cancer genetics research.