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Public Concern About Monitoring Twitter Users and Their Conversations to Recruit for Clinical Trials: Survey Study.

ABSTRACT: BACKGROUND:Social networks such as Twitter offer the clinical research community a novel opportunity for engaging potential study participants based on user activity data. However, the availability of public social media data has led to new ethical challenges about respecting user privacy and the appropriateness of monitoring social media for clinical trial recruitment. Researchers have voiced the need for involving users' perspectives in the development of ethical norms and regulations. OBJECTIVE:This study examined the attitudes and level of concern among Twitter users and nonusers about using Twitter for monitoring social media users and their conversations to recruit potential clinical trial participants. METHODS:We used two online methods for recruiting study participants: the open survey was (1) advertised on Twitter between May 23 and June 8, 2017, and (2) deployed on TurkPrime, a crowdsourcing data acquisition platform, between May 23 and June 8, 2017. Eligible participants were adults, 18 years of age or older, who lived in the United States. People with and without Twitter accounts were included in the study. RESULTS:While nearly half the respondents-on Twitter (94/603, 15.6%) and on TurkPrime (509/603, 84.4%)-indicated agreement that social media monitoring constitutes a form of eavesdropping that invades their privacy, over one-third disagreed and nearly 1 in 5 had no opinion. A chi-square test revealed a positive relationship between respondents' general privacy concern and their average concern about Internet research (P<.005). We found associations between respondents' Twitter literacy and their concerns about the ability for researchers to monitor their Twitter activity for clinical trial recruitment (P=.001) and whether they consider Twitter monitoring for clinical trial recruitment as eavesdropping (P<.001) and an invasion of privacy (P=.003). As Twitter literacy increased, so did people's concerns about researchers monitoring Twitter activity. Our data support the previously suggested use of the nonexceptionalist methodology for assessing social media in research, insofar as social media-based recruitment does not need to be considered exceptional and, for most, it is considered preferable to traditional in-person interventions at physical clinics. The expressed attitudes were highly contextual, depending on factors such as the type of disease or health topic (eg, HIV/AIDS vs obesity vs smoking), the entity or person monitoring users on Twitter, and the monitored information. CONCLUSIONS:The data and findings from this study contribute to the critical dialogue with the public about the use of social media in clinical research. The findings suggest that most users do not think that monitoring Twitter for clinical trial recruitment constitutes inappropriate surveillance or a violation of privacy. However, researchers should remain mindful that some participants might find social media monitoring problematic when connected with certain conditions or health topics. Further research should isolate factors that influence the level of concern among social media users across platforms and populations and inform the development of more clear and consistent guidelines.

SUBMITTER: Reuter K

PROVIDER: S-EPMC6914244 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

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Public Concern About Monitoring Twitter Users and Their Conversations to Recruit for Clinical Trials: Survey Study.

Reuter Katja K Zhu Yifan Y Angyan Praveen P Le NamQuyen N Merchant Akil A AA Zimmer Michael M

Journal of medical Internet research 20191030 10

<h4>Background</h4>Social networks such as Twitter offer the clinical research community a novel opportunity for engaging potential study participants based on user activity data. However, the availability of public social media data has led to new ethical challenges about respecting user privacy and the appropriateness of monitoring social media for clinical trial recruitment. Researchers have voiced the need for involving users' perspectives in the development of ethical norms and regulations. ...[more]

PMID: 31670698

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Project description:BackgroundInsufficient recruitment of participants remains a critical roadblock to successful clinical research, particularly clinical trials. Social media provide new ways for connecting potential participants with research opportunities. Researchers suggest that the social network Twitter may serve as a rich avenue for exploring how patients communicate about their health issues and increasing enrollment in cancer clinical trials. However, there is a lack of evidence that Twitter offers practical utility and impact.ObjectiveThis pilot study aimed to examine the feasibility and impact of using Twitter monitoring data (ie, user activity and their conversations about cancer-related conditions and concerns expressed by Twitter users in Los Angeles County) as a tool for enhancing clinical trial recruitment at a comprehensive cancer center.MethodsWe will conduct a mixed-methods interrupted time series study design with a before-and-after social media recruitment intervention. On the basis of a preliminary analysis of eligible trials, we plan to onboard at least 84 clinical trials across 6 disease categories: breast cancer, colon cancer, kidney cancer, lymphoma, non-small cell lung cancer, and prostate cancer that are open to accrual at the University of Southern California (USC) Norris Comprehensive Cancer Center. We will monitor messages about these 6 cancer conditions posted by Twitter users in Los Angeles County. Recruitment for the trials will occur through the Twitter account (@USCTrials). Primary study outcomes-feasibility and acceptance of the social media intervention among targeted Twitter users and the study teams of the onboarded trials-will be assessed using qualitative interviews and the 4-point Likert scale and by calculating the proportion of targeted Twitter users who engaged with outreach messages. Second, impact of the social media intervention will be measured by calculating the proportion of enrollees in trials. The enrollment rate will be compared between the active intervention period and the prior 10 months as historical control for each disease trial group. This study has been funded by the National Center for Advancing Translational Science through a Clinical and Translational Science Award. Study approval was obtained from the clinical investigations committee at USC Norris and the institutional review board at USC.ResultsRecruitment on Twitter started in February 2018. Data collection will be completed in November 2018.ConclusionsThis pilot project will provide preliminary data and practical insight into the application of publicly available Twitter data to identify and recruit clinical trial participants across 6 cancer disease types. We will shed light on the acceptance of the social media intervention among Twitter users and study team members of the onboarded trials. If successful, the findings will inform a multisite randomized controlled trial to determine the efficacy of the social media intervention across different locations and populations.Trial registrationClinicalTrials.gov NCT03408561; https://clinicaltrials.gov/ct2/show/NCT03408561 (Archived by WebCite at http://www.webcitation.org/72LihauzW).Registered report identifierRR1-10.2196/9762.

Project description:BackgroundInfodemiology is an emerging field of research that utilizes user-generated health-related content, such as that found in social media, to help improve public health. Twitter has become an important venue for studying emerging patterns in health issues such as substance use because it can reflect trends in real-time and display messages generated directly by users, giving a uniquely personal voice to analyses. Over the past year, several states in the United States have passed legislation to legalize adult recreational use of cannabis and the federal government in Canada has done the same. There are few studies that examine the sentiment and content of tweets about cannabis since the recent legislative changes regarding cannabis have occurred in North America.ObjectiveTo examine differences in the sentiment and content of cannabis-related tweets by state cannabis laws, and to examine differences in sentiment between the United States and Canada between 2017 and 2019.MethodsIn total, 1,200,127 cannabis-related tweets were collected from January 1, 2017, to June 17, 2019, using the Twitter application programming interface. Tweets then were grouped geographically based on cannabis legal status (legal for adult recreational use, legal for medical use, and no legal use) in the locations from which the tweets came. Sentiment scoring for the tweets was done with VADER (Valence Aware Dictionary and sEntiment Reasoner), and differences in sentiment for states with different cannabis laws were tested using Tukey adjusted two-sided pairwise comparisons. Topic analysis to determine the content of tweets was done using latent Dirichlet allocation in Python, using a Java implementation, LdaMallet, with Gensim wrapper.ResultsSignificant differences were seen in tweet sentiment between US states with different cannabis laws (P=.001 for negative sentiment tweets in fully illegal compared to legal for adult recreational use states), as well as between the United States and Canada (P=.003 for positive sentiment and P=.001 for negative sentiment). In both cases, restrictive state policy environments (eg, those where cannabis use is fully illegal, or legal for medical use only) were associated with more negative tweet sentiment than less restrictive policy environments (eg, where cannabis is legal for adult recreational use). Six key topics were found in recent US tweet contents: fun and recreation (keywords, eg, love, life, high); daily life (today, start, live); transactions (buy, sell, money); places of use (room, car, house); medical use and cannabis industry (business, industry, company); and legalization (legalize, police, tax). The keywords representing content of tweets also differed between the United States and Canada.ConclusionsKnowledge about how cannabis is being discussed online, and geographic differences that exist in these conversations may help to inform public health planning and prevention efforts. Public health education about how to use cannabis in ways that promote safety and minimize harms may be especially important in places where cannabis is legal for adult recreational and medical use.

Project description:BackgroundThe US public health response to the COVID-19 pandemic has required contact tracing and symptom monitoring at an unprecedented scale. The US Centers for Disease Control and Prevention and several partners created the Text Illness Monitoring (TIM) platform in 2015 to assist US public health jurisdictions with symptom monitoring for potential novel influenza virus outbreaks. Since May 2020, 142 federal, state, and local public health agencies have deployed TIM for COVID-19 symptom monitoring.ObjectiveThe aim of this study was to evaluate the utility, benefits, and challenges of TIM to help guide decision-making for improvements and expansion to support future public health emergency response efforts.MethodsWe conducted a brief online survey of previous and current TIM administrative users (admin users) from November 28 through December 21, 2020. Closed- and open-ended questions inquired about the onboarding process, decision to use TIM, groups monitored with TIM, comparison of TIM to other symptom monitoring systems, technical challenges and satisfaction with TIM, and user support. A total of 1479 admin users were invited to participate.ResultsA total of 97 admin users from 43 agencies responded to the survey. Most admin users represented the Indian Health Service (35/97, 36%), state health departments (26/97, 27%), and local or county health departments (18/97, 19%), and almost all were current users of TIM (85/94, 90%). Among the 43 agencies represented, 11 (26%) used TIM for monitoring staff exclusively, 13 (30%) monitored community members exclusively, and 19 (44%) monitored both staff and community members. Agencies most frequently used TIM to monitor symptom development in contacts of cases among community members (28/43, 65%), followed by symptom development among staff (27/43, 63%) and among staff contacts of cases (24/43, 56%). Agencies also reported using TIM to monitor patients with COVID-19 for the worsening of symptoms among staff (21/43, 49%) and community members (18/43, 42%). When asked to compare TIM to previous monitoring systems, 78% (40/51) of respondents rated TIM more favorably than their previous monitoring system, 20% (10/51) said there was no difference, and 2% (1/51) rated the previous monitoring system more favorably than TIM. Most respondents found TIM favorable in terms of time burden, staff burden, timeliness of the data, and the ability to monitor large population sizes. TIM compared negatively to other systems in terms of effort to enroll participants (ie, persons TIM monitors) and accuracy of the data. Most respondents (76/85, 89%) reported that they would highly or somewhat recommend TIM to others for symptom monitoring.ConclusionsThis evaluation of TIM showed that agencies used TIM for a variety of purposes and rated TIM favorably compared to previously used monitoring systems. We also identified opportunities to improve TIM; for example, enhancing the flexibility of alert deliveries would better meet admin users' varying needs. We also suggest continuous program evaluation practices to assess and respond to implementation gaps.

Project description:BackgroundFailure to find and attract clinical trial participants remains a persistent barrier to clinical research. Researchers increasingly complement recruitment methods with social media-based methods. We hypothesized that user-generated data from cancer survivors and their family members and friends on the social network Twitter could be used to identify, engage, and recruit cancer survivors for cancer trials.ObjectiveThis pilot study aims to examine the feasibility of using user-reported health data from cancer survivors and family members and friends on Twitter in Los Angeles (LA) County to enhance clinical trial recruitment. We focus on 6 cancer conditions (breast cancer, colon cancer, kidney cancer, lymphoma, lung cancer, and prostate cancer).MethodsThe social media intervention involved monitoring cancer-specific posts about the 6 cancer conditions by Twitter users in LA County to identify cancer survivors and their family members and friends and contacting eligible Twitter users with information about open cancer trials at the University of Southern California (USC) Norris Comprehensive Cancer Center. We reviewed both retrospective and prospective data published by Twitter users in LA County between July 28, 2017, and November 29, 2018. The study enrolled 124 open clinical trials at USC Norris. We used descriptive statistics to report the proportion of Twitter users who were identified, engaged, and enrolled.ResultsWe analyzed 107,424 Twitter posts in English by 25,032 unique Twitter users in LA County for the 6 cancer conditions. We identified and contacted 1.73% (434/25,032) of eligible Twitter users (127/434, 29.3% cancer survivors; 305/434, 70.3% family members and friends; and 2/434, 0.5% Twitter users were excluded). Of them, 51.4% (223/434) were female and approximately one-third were male. About one-fifth were people of color, whereas most of them were White. Approximately one-fifth (85/434, 19.6%) engaged with the outreach messages (cancer survivors: 33/85, 38% and family members and friends: 52/85, 61%). Of those who engaged with the messages, one-fourth were male, the majority were female, and approximately one-fifth were people of color, whereas the majority were White. Approximately 12% (10/85) of the contacted users requested more information and 40% (4/10) set up a prescreening. Two eligible candidates were transferred to USC Norris for further screening, but neither was enrolled.ConclusionsOur findings demonstrate the potential of identifying and engaging cancer survivors and their family members and friends on Twitter. Optimization of downstream recruitment efforts such as screening for digital populations on social media may be required. Future research could test the feasibility of the approach for other diseases, locations, languages, social media platforms, and types of research involvement (eg, survey research). Computer science methods could help to scale up the analysis of larger data sets to support more rigorous testing of the intervention.Trial registrationClinicalTrials.gov NCT03408561; https://clinicaltrials.gov/ct2/show/NCT03408561.

Dataset Information

Public Concern About Monitoring Twitter Users and Their Conversations to Recruit for Clinical Trials: Survey Study.

Publications

Public Concern About Monitoring Twitter Users and Their Conversations to Recruit for Clinical Trials: Survey Study.

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