Evaluation of a feasibility study using patient-generated health data from Twitter to identify, engage, and recruit cancer survivors in clinical trials in Los Angeles County (Preprint)

2021 ◽  
Author(s):  
Katja Reuter ◽  
Praveen Angyan ◽  
NamQuyen Le ◽  
Thomas A. Buchanan

BACKGROUND Failure 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/friends on the social network Twitter could be used to identify, engage, and recruit cancer survivors into cancer trials. OBJECTIVE This pilot examined the feasibility of using user-reported health data from cancer survivors and family members/friends on Twitter in Los Angeles County for enhancing clinical trial recruitment. We focused on six cancer conditions (breast, colon, kidney, lymphoma, lung cancer, and prostate). METHODS The social media intervention involved (1) monitoring cancer-specific posts about the six cancers by Twitter users in Los Angeles (L.A.) County to identify cancer survivors and their family members/friends, and (2) contacting eligible Twitter users with information about open cancer trials at the USC Norris Comprehensive Cancer Center (USC Norris). We reviewed both retrospective and prospective data published by Twitter users in L.A. 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. RESULTS We analyzed 107,424 Twitter posts in English by 25,032 unique Twitter users in L.A. County for the six cancer conditions. We identified and contacted 434 (1.7%) eligible cancer survivors (29.3 %; 127/434) and their family members/friends (70.3%; 305/434). Half of them were female and about a third was male. About one-fifth were Persons of Color, while most of them were White. About one-fifth (19.6%, 85/434) engaged with the outreach messages (cancer survivors: 38.2%, 33/85; family members/friends: 61.2%, 52/85). A quarter of those who engaged with the message were male, the majority were women, and about one-fifth were People of Color, while the majority was White. Nearly 12% (10/85) of the contacted users requested more information and 40% (4/10) set up a pre-screening. Two eligible candidates were transferred to USC Norris for further screening. Both were eligible for trial participation, but none of them enrolled. CONCLUSIONS Our findings demonstrate the potential of identifying and engaging cancer survivors and their family members/friends on Twitter. The 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 datasets to support more rigorous testing of the intervention. CLINICALTRIAL not applicable

2018 ◽  
Author(s):  
Katja Reuter ◽  
Praveen Angyan ◽  
NamQuyen Le ◽  
Alicia MacLennan ◽  
Sarah Cole ◽  
...  

BACKGROUND Insufficient recruitment of participants remains a critical roadblock to successful clinical research, in particular clinical trials. Social media (SM) provides new ways for connecting potential participants with research opportunities. Researchers suggested 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. OBJECTIVE The objective of this pilot study is to examine the feasibility and impact of using Twitter monitoring data (i.e., user activity and their conversations about cancer-related conditions and concerns expressed by Twitter users in LA County) as a tool for enhancing clinical trial recruitment at a comprehensive cancer center. METHODS We will conduct a mixed-methods interrupted time series study design with a before and after SM recruitment intervention. Based on a preliminary analysis of eligible trials, we plan to onboard at least 84 clinical trials across six disease categories: breast cancer, colon cancer, kidney cancer, lymphoma, non-small cell lung cancer, and prostate cancer that are open to accrual at the USC Norris Comprehensive Cancer Center (USC Norris). We will monitor messages about the six cancer conditions posted by Twitter users in LA County. Recruitment for the trials will occur through the Twitter account (@USCTrials). Primary study outcomes include, first, feasibility and acceptance of the social media intervention among targeted Twitter users and the study teams of the onboarded trials, which will be assessed using qualitative interviews and 4-point Likert scale, and 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 people who enrolled 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. RESULTS This study has been funded by the National Center for Advancing Translational Science (NCATS) through a Clinical and Translational Science Award (CTSA) award. Study approval was obtained from the Clinical Investigations Committee (CIC) at USC Norris and the Institutional Review Board (IRB) at USC. Recruitment on Twitter started in February 2018. Data collection will be completed in November 2018. CONCLUSIONS This pilot project will provide preliminary data and practical insight into the application of publicly available Twitter data to identify and recruit clinical trial participants center across six cancer disease types. We will shed light on the acceptance of the SM 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.


Author(s):  
Giandomenico Di Domenico ◽  
Annamaria Tuan ◽  
Marco Visentin

AbstractIn the wake of the COVID-19 pandemic, unprecedent amounts of fake news and hoax spread on social media. In particular, conspiracy theories argued on the effect of specific new technologies like 5G and misinformation tarnished the reputation of brands like Huawei. Language plays a crucial role in understanding the motivational determinants of social media users in sharing misinformation, as people extract meaning from information based on their discursive resources and their skillset. In this paper, we analyze textual and non-textual cues from a panel of 4923 tweets containing the hashtags #5G and #Huawei during the first week of May 2020, when several countries were still adopting lockdown measures, to determine whether or not a tweet is retweeted and, if so, how much it is retweeted. Overall, through traditional logistic regression and machine learning, we found different effects of the textual and non-textual cues on the retweeting of a tweet and on its ability to accumulate retweets. In particular, the presence of misinformation plays an interesting role in spreading the tweet on the network. More importantly, the relative influence of the cues suggests that Twitter users actually read a tweet but not necessarily they understand or critically evaluate it before deciding to share it on the social media platform.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e18573-e18573
Author(s):  
Jessica Yasmine Islam ◽  
Denise Christina Vidot ◽  
Imran K Islam ◽  
Argelis Rivera ◽  
Marlene Camacho-Rivera

e18573 Background: Despite the use of clinical trials to provide gold-standard evidence of treatment and intervention effectiveness, racial/ethnic minorities are frequently underrepresented participants. Our objective was to evaluate racial/ethnic differences in knowledge and attitudes towards clinical trials among adults in the U.S. Methods: We leveraged Health Informational National Trends Survey (HINTS) data, which is a weighted, nationally representative survey of 3865 adults (≥18 years). Data were collected between February-June 2020, and included age, race/ethnicity, sex, cancer history, and comorbidities. Participants were asked questions focused on clinical trials, including their knowledge, influential factors to participate, trusted sources of information, and if they were ever invited or participated in a clinical trial. Among adults who self-reported to have heard of clinical trials (n = 2366), we used multivariable logistic regression to evaluate racial/ethnic differences in self-reported invitation and participation in clinical trials after adjustment for cancer history, age, sex, comorbidities, and insurance status. Results: Overall, the sample included 64% non-Hispanic (NH) White, 11% NH-Black, 17% Hispanic, and 5% NH-Asian respondents. Nine percent were cancer survivors. Almost 60% self-reported to at least have some knowledge about clinical trials. When asked about factors that would influence their decision to participate in clinical trials “A lot”, participants across racial groups most frequently chose “I would want to get better” and “If the standard care was not covered by my insurance.” Cancer survivors also frequently reported their decision would be influenced “A lot” or “Somewhat” if “My doctor encouraged me to participate.” NH-White (76%), NH-Black (78%), and Hispanic (77%) cancer survivors reported their trusted source of information about clinical trials was their health care provider; NH-Asian cancer survivors reported their health care provider (51%) as well as government health agencies (30%). Compared to NH-White adults, NH-Black adults were more likely to be invited to participate in a clinical trial (OR: 2.60, 95% CI: 1.53-4.43). However, compared to NH-White adults, our data suggest NH-Black adults were less likely to participate in the clinical trial (OR: 0.76, 95% CI: 0.39-1.49) although not statistically significant. Compared to NH-White adults, NH-Asian adults were less likely to participate in clinical trials (OR: 0.10, 95% CI: 0.06-0.18). Conclusions: Health care providers are a trusted source of clinical trial information. Although NH-Black adults are more likely to be invited, they are less likely to participate in a clinical trial; as well as Asian adults. Efforts to leverage insights gained on factors of influence and sources of trusted information on clinical trials should be prioritized.


2021 ◽  
Author(s):  
Jarett Anderson ◽  
Austin Hamp ◽  
Michelle Militello ◽  
Ryan Geist ◽  
Jaclyn Anderson ◽  
...  

BACKGROUND Clinical trials are an essential process in discovering new biomedical or behavioral outcomes in disease processes. There are several steps involved in creating a clinical trial. One step, patient recruitment, is often touted as the largest contributor to trial delays, which has financial, scientific, and ethical ramifications. Approximately 1.2 billion dollars in the United States is spent each year on this process and as many as 86% of clinical trials do not meet recruitment targets within their perspective timeframes, and 19% of trials had to be terminated early due to insufficient recruitment and/or patient retention1. Social media is a viable, inexpensive tool that can be utilized to improve both recruitment and retention rates2. To date, platforms such as Facebook, Twitter and others have been widely utilized in recruitment for clinical trials, communication among stakeholders, and educational tools. Social media also has the advantage of reaching populations that otherwise would be more difficult to reach3. A list of these platforms and each of their distinct advantages for clinical trial recruitment can be found in Table 1. This review aims to highlight the unique characteristics of several social media platforms and their advantageous properties in increasing recruitment and retention during clinical trials. OBJECTIVE This narrative review analyzes the current use of several social media sites in clinical trial recruitment and retention. It also offers insight concerning potential uses of these sites that are not currently utilized. METHODS A literature search was performed using PubMed, Google Scholar, and ResearchGate to access and review relevant articles published in peer-reviewed journals concerning social media and its use in clinical trials. Two independent researchers with education and experience in dermatology screened publications to select studies featuring quantitative results concerning social media and clinical trial recruitment. RESULTS 13 social media applications were studied and reviewed. 7 of these social media sites or applications have currently been studied, and their use in complementing traditional recruiting methods such as advertisements in newspapers, health fairs, and direct mailing, has been analyzed and reported. 6 additional social media applications have further been studied, and their potential use within clinical trial research has been additionally analyzed. CONCLUSIONS A large number and variety of social media platforms exist to aid in the recruitment and retention process for clinical trials, many of which can utilize niche features and reach a targeted demographic. Although recruitment remains a barrier for researchers involved in clinical trials, the potential to recruit through social media may be underutilized. Many avenues that exist to improve recruitment have not been leveraged. For example, partnering to create collaborative videos with social media influencers on platforms such as Instagram and Youtube may help to broaden the audience and increase clinical trial enrollments. Creating biomedical educational profiles or channels that discuss details of clinical trials with descriptions of these trials could also be employed to increase the scope of the audience. Reddit, Smart Patients, and Patients Like Me can target difficult-to-reach patient populations due to their use of subgroups, allowing researchers to reach their target audience. Additionally, many of these platforms provide user engagement features that allow users to respond directly to videos or posts and could be used to encourage enrollment by allowing users to react directly to clinical trial advertisements.


Author(s):  
Saliha Akhtar

Research has shown that clinical research continues to have difficulty recruiting participants. This problem is expected to increase as the number of clinical trials increases and as there continues to be more focus on complex diseases and treatments. Researchers have typically relied on traditional recruitment methods to recruit participants, which revolve around the physicians and their support staff having the primary role to locate and recruit these participants. However, with individuals using online platforms such as social media to retrieve information, this creates an opportunity for research site personnel to use it as a way to relay information on clinical trial opportunities. Studies that have used social media as a way to recruit participants are discussed. Furthermore, pros and cons of social media for recruitment, along with recommendations that future researchers should consider when deciding whether to implement this type of strategy in their clinical trials will be shared. In general, clinical trial recruitment strategies need to shift to an approach that is not only more targeted, but also has a larger reach. By evaluating the success of studies that have used social recruitment strategies so far, it is evident that future researchers can also achieve recruitment success through social media. Moreover, social media could be a promising new avenue for clinical trial recruitment that allows for a more positive experience for both investigative site personnel and potential participants.


1972 ◽  
Vol 37 (3) ◽  
pp. 323-328 ◽  
Author(s):  
Virginia Sanchez-Salazar ◽  
Anne Stark

Laryngectomee rehabilitation at the Los Angeles County-University of Southern California Medical Center’s Speech Pathology Clinic is based on crisis intervention theory. The speech pathologist and the social worker, working together to totally rehabilitate laryngectomees, identified four potentially crisis-precipitating events. The laryngectomee rehabilitation staff designed and applied interventive and preventive techniques for these situations. They include preoperative counseling of the patient as soon as possible after the need for the laryngectomy is confirmed and related to him, follow-up ward visits with him and his family, team counseling of the patient before his discharge, outpatient clinic visits after discharge, participation in the hospital’s chapter of the Lost Chord Club, and group interaction therapy one hour a week for 10 weeks.


2020 ◽  
Vol 17 (2) ◽  
pp. 13-25
Author(s):  
Ma’at Hembrick ◽  
Makala Conner ◽  
Heather Tarleton

Cancer survivors have an increased risk of treatment-related deficits in physical health and low health-related quality of life. In this cross-sectional study, a health questionnaire was mailed to women from the Los Angeles County Cancer Surveillance Program aged 45-70 and diagnosed with cervical, endometrial, or ovarian cancer in 2005-2014. Of the 5,941 surveys with valid postal addresses, 586 (10%) were completed and returned. The average age of respondents was 66 years old, and 36% identified as non-white. Non-white respondents were less likely to have a college degree (p<0.001), more likely to sleep for less than seven hours each night (p<0.001), experience bodily pain (p<0.001), and have a diagnosis of cervical cancer (p=0.002), when compared to white respondents. Health behaviors and determinants were examined across cervical, endometrial, and ovarian cancer cases. Cervical cancer survivors reported sleeping less than 7 hours per night, on average (p=0.015). Race was associated with sleep duration among endometrial (p=0.002) and ovarian (p=0.003) cancer survivors. Menopausal status was associated with the relationship between race and sleep duration (p<0.001). Depression was inversely related to sleep duration (p = 0.022) but was not associated with race, menopausal status, time since treatment, physical activity, or cancer type. Postmenopausal cervical cancer survivors reported a moderate concern about fall risk compared to their premenopausal counterparts (p=0.048). Physical activity levels increased as time since treatment increased (p=0.003) regardless of cancer type. Race, menopausal status, depression, and cancer type impacted the sleep duration. KEYWORDS: Health Disparities; Sleep Duration; Depression; Gynecologic Cancers; Survivorship Care


Author(s):  
Elizabeth M Seabrook ◽  
Margaret L Kern ◽  
Ben D Fulcher ◽  
Nikki S Rickard

BACKGROUND Frequent expression of negative emotion words on social media has been linked to depression. However, metrics have relied on average values, not dynamic measures of emotional volatility. OBJECTIVE The aim of this study was to report on the associations between depression severity and the variability (time-unstructured) and instability (time-structured) in emotion word expression on Facebook and Twitter across status updates. METHODS Status updates and depression severity ratings of 29 Facebook users and 49 Twitter users were collected through the app MoodPrism. The average proportion of positive and negative emotion words used, within-person variability, and instability were computed. RESULTS Negative emotion word instability was a significant predictor of greater depression severity on Facebook (rs(29)=.44, P=.02, 95% CI 0.09-0.69), even after controlling for the average proportion of negative emotion words used (partial rs(26)=.51, P=.006) and within-person variability (partial rs(26)=.49, P=.009). A different pattern emerged on Twitter where greater negative emotion word variability indicated lower depression severity (rs(49)=−.34, P=.01, 95% CI −0.58 to 0.09). Differences between Facebook and Twitter users in their emotion word patterns and psychological characteristics were also explored. CONCLUSIONS The findings suggest that negative emotion word instability may be a simple yet sensitive measure of time-structured variability, useful when screening for depression through social media, though its usefulness may depend on the social media platform.


2017 ◽  
Author(s):  
Julie M Cowie ◽  
Mark E Gurney

BACKGROUND This report provides data on the use of social media advertising as a clinical trial recruitment strategy targeting healthy volunteers aged 60 years and older. The social media advertising campaign focused on enrollment for a Phase 1 clinical trial. Traditional means of recruiting—billboards, newspaper advertising, word of mouth, personal referrals, and direct mail—were not producing enough qualified participants. OBJECTIVE To demonstrate the effectiveness of using targeted advertising on the social networking site Facebook to recruit people aged 60 years and older for volunteer clinical trial participation. METHODS The trial sponsor used a proactive approach to recruit participants using advertising on social media. The sponsor placed and monitored an Institutional Review Board-approved advertising campaign on Facebook to recruit potential candidates for a Phase 1 clinical trial. The clinical trial required a 10-day residential (overnight) stay at a clinic in Michigan, with one follow-up visit. The sponsor of the clinical trial placed the advertising, which directed interested respondents to a trial-specific landing page controlled by the Contract Research Organization (CRO). The CRO provided all follow-up consenting, prescreening, screening, and enrollment procedures. The campaign was waged over an 8-week period to supplement recruiting by the CRO. RESULTS A total of 621 people responded to a Facebook advertising campaign by completing an online form or telephoning the CRO, and the clinical trial was fully enrolled at 45 subjects following an 8-week Facebook advertising campaign. CONCLUSIONS An 8-week Facebook advertising campaign contributed to 868 inquiries made regarding a Phase 1 clinical trial seeking to enroll healthy elderly subjects. Over the initial 11 weeks of recruitment, 178 inquiries were received using traditional methods of outreach. Respondents to the Facebook advertising campaign described in this report engaged with the sponsored advertising at a higher rate than is typical for social media-based clinical trial recruitment strategies. The older adults’ engagement rate of 4.92% was more than twice as high as click-through rates of younger adults engaged with social media advertising in other clinical trial recruitment studies. Advertising placed on the social media platform Facebook is effective with the healthy volunteer population aged 60 years and older. This approach can quickly and cost-effectively reach qualified candidates for clinical trial recruitment as a supplement to traditional means of recruiting. CLINICALTRIAL ClinicalTrials.gov: NCT02840279; https://clinicaltrials.gov/ct2/show/NCT02840279 (Archived by WebCite at http://www.webcitation.org/6wamIWXAt)


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