Dataset Information

A novel approach to conducting clinical trials in the community setting: utilizing patient-driven platforms and social media to drive web-based patient recruitment.

ABSTRACT:

Background

Participant recruitment for clinical research studies remains a significant challenge for researchers. Novel approaches to recruitment are necessary to ensure that populations are easier to reach. In the context of rare diseases, social media provides a unique opportunity for connecting with patient groups that have representatively lower diagnosis rates when compared with more common diseases or illness. We describe the implementation of designing a patient-centered approach to message design for the purposes of recruiting patients for clinical research studies for rare disease populations.

Methods

Using an iterative research approach, we analyzed our previous experience of using web-based direct-to-patient recruitment methods to compare these online strategies with traditional center of excellence recruitment strategies. After choosing six research studies for inclusion in the previous study, in-depth, online interviews (n?=?37) were conducted with patients represented in each disease category to develop and test recruitment message strategies for social media and a Web-based platform for patients to access study information and pre-screen. Finally, relationships were established with Patient Advocacy Groups representing each rare disease category to ensure further dissemination of recruitment materials via their own social media networks.

Results

Guided by social marketing theory, we created and tested various recruitment message designs. Three key message concepts preferred by patients emerged: (1) infographic; (2) positive emotional messages; and (3) educational information for sharing. A base study website was designed and created based on data from patient interviews. This website includes the option for potential participants to pre-screen and determine their eligibility for the study.

Conclusions

Study participants report wanting to be involved in the design and implementation of recruitment approaches for clinical research studies. The application of the aforementioned methods could aide in the evolution of clinical research practices for the recruitment of both rare and common diseases, where patient-centric approaches can help to create targeted messages designs that participants pre-test and support.

SUBMITTER: Applequist J

PROVIDER: S-EPMC7069058 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

A novel approach to conducting clinical trials in the community setting: utilizing patient-driven platforms and social media to drive web-based patient recruitment.

Applequist Janelle J Burroughs Cristina C Ramirez Artemio A Merkel Peter A PA Rothenberg Marc E ME Trapnell Bruce B Desnick Robert J RJ Sahin Mustafa M Krischer Jeffrey P JP

BMC medical research methodology 20200313 1

<h4>Background</h4>Participant recruitment for clinical research studies remains a significant challenge for researchers. Novel approaches to recruitment are necessary to ensure that populations are easier to reach. In the context of rare diseases, social media provides a unique opportunity for connecting with patient groups that have representatively lower diagnosis rates when compared with more common diseases or illness. We describe the implementation of designing a patient-centered approach ...[more]

PMID: 32169041

Similar Datasets

Project description:BackgroundWeb-based respondent-driven sampling is a novel sampling method for the recruitment of participants for generating population estimates, studying social network characteristics, and delivering health interventions. However, the application, barriers and facilitators, and recruitment performance of web-based respondent-driven sampling have not yet been systematically investigated.ObjectiveOur objectives were to provide an overview of published research using web-based respondent-driven sampling and to investigate factors related to the recruitment performance of web-based respondent-driven sampling.MethodsWe conducted a scoping review on web-based respondent-driven sampling studies published between 2000 and 2019. We used the process evaluation of complex interventions framework to gain insights into how web-based respondent-driven sampling was implemented, what mechanisms of impact drove recruitment, what the role of context was in the study, and how these components together influenced the recruitment performance of web-based respondent-driven sampling.ResultsWe included 18 studies from 8 countries (high- and low-middle income countries), in which web-based respondent-driven sampling was used for making population estimates (n=12), studying social network characteristics (n=3), and delivering health-related interventions (n=3). Studies used web-based respondent-driven sampling to recruit between 19 and 3448 participants from a variety of target populations. Studies differed greatly in the number of seeds recruited, the proportion of successfully recruiting participants, the number of recruitment waves, the type of incentives offered to participants, and the duration of data collection. Studies that recruited relatively more seeds, through online platforms, and with less rigorous selection procedures reported relatively low percentages of successfully recruiting seeds. Studies that did not offer at least one guaranteed material incentive reported relatively fewer waves and lower percentages of successfully recruiting participants. The time of data collection was shortest in studies with university students.ConclusionsWeb-based respondent-driven sampling can be successfully applied to recruit individuals for making population estimates, studying social network characteristics, and delivering health interventions. In general, seed and peer recruitment may be enhanced by rigorously selecting and motivating seeds, offering at least one guaranteed material incentive, and facilitating adequate recruitment options regarding the target population's online connectedness and communication behavior. Potential trade-offs should be taken into account when implementing web-based respondent-driven sampling, such as having less opportunities to implement rigorous seed selection procedures when recruiting many seeds, as well as issues around online rather than physical participation, such as the risk of cheaters participating repeatedly.

Project description:BackgroundThree-dimensional (3D) printing technology has been utilized to create patient-specific (PS) replicas as visual aids for surgical planning.1-4 However, they cannot recreate the operative experience due to a lack of realistic tissue characteristics.ObjectivesDevelop anatomically accurate, realistic, PS partial nephrectomy platforms suitable for pre-operative surgical rehearsals using 3D-printing and hydrogel casting.MaterialPatient CT scans were segmented into a computer-aided design (CAD) file and used to create injection casts. Kidney and tumor casts along with hollow vascular and urinary structures were 3D-printed. The hilar structures and tumor were registered into the kidney cast, injected with poly-vinyl alcohol (PVA) hydrogel, and processed to create the kidney phantom. Mechanical and functional testing protocols were completed to confirm that the properties of PVA matched the live tissue.5 Anatomical accuracy was confirmed by CT scanning the phantom and creating another CAD, which was compared to the original patient CAD. Full-procedural PS rehearsals were completed 24-48 hours prior to their respective live surgeries. Clinically relevant metrics (warm ischemia time, estimated blood loss, and positive surgical margins) from each rehearsal and live case were compared using a Wilcoxon-rank sum test.ResultsThe 7%-3freeze/thaw PVA best recreated the mechanical and functional properties of porcine kidneys, while anatomical verification showed ≤1 mm deviation of the kidney and tumor from the patient anatomy and ≤3 mm for the hilar structures. PS rehearsal platforms were fabricated using these methods for 8 patients (average tumor size 5.92 cm and nephrometry score 9.8). A positive correlation was found for warm ischemia time and estimated blood loss between rehearsals and live surgeries.ConclusionThis reproducible method shows high anatomical accuracy, realistic tissue properties, and translational effects between rehearsals and live surgery. To determine the effects on patient outcomes, future studies will compare the impact of completing a pre-operative rehearsal vs standard surgical preparation.

Project description:BACKGROUND:Social media platforms such as Facebook, Instagram, and Twitter, which have millions of users who interact and communicate every day, have been effective in promoting sexual health interventions and in disseminating reproductive health education. They have also been shown to be useful in health promotion and have been used to track several key metrics (eg, comments, posts) among users of all demographics. However, there is a lack of research on the impact and reach of these social media platforms as a community-based tool for disseminating sexual health information and for increasing engagement among Black adolescents and young adults, which is a targeted high-risk population. OBJECTIVE:The purpose of this study was to determine the social media platforms and banner advertisements that affected engagement among Black male adolescents and young adults in participating in web-based health surveys. METHODS:A web-based survey was conducted from March 2019 to July 2019 to assess sexual health and health behaviors in a convenience sample of Black male adolescents and young adults in the age range of 18-24 years (N=170). Social media metrics from Facebook, Instagram, and Twitter were monitored. This cross-sectional survey comprised several categories, including basic personal information, drug-related risk behaviors, health care, sexual reproductive health questions, attitudes, norms, and perceived control, mental health, violence-related risk behaviors, and social media preferences. RESULTS:Social media advertisements on the Black Male Opinion survey reached approximately 146,412 individuals. Our primary finding of the web-based survey engagement was that referral (eg, group chat, indirect social media sharing) led to as the greatest proportion of recruitment, with Twitter and YouTube as the preferred sites to receive sexual health information. CONCLUSIONS:Recognizing the variety of technologies being used among Black male young adults and adolescents can help the community, researchers, and health care providers understand the web-based engagement of this high-risk population. This information may also promote culturally sensitive, customized marketing on sexual health information for this population.

Project description:BackgroundOnline advertisements on social media platforms are an important tool for engaging relevant populations in public health research. However, little is known about what platforms and ad characteristics are most effective in engaging high-priority HIV populations, including racial/ethnic and sexual minority individuals.MethodsData from this study were drawn from advertising campaigns conducted on popular websites and social media platforms that recruited for several nationwide randomized controlled trials of various HIV prevention and testing strategies among sexual minority men (SMM) from December 2019 until March 2022. Descriptive statistics and LASSO regression models were used to determine which platforms and ad characteristics were associated with significantly higher odds of engagement.ResultsAds on Google search, Facebook, and Instagram yielded the most cost-effective engagement, while gay-oriented dating platforms and TrafficJunky yielded the highest percentage of users who appeared to meet basic eligibility criteria. The highest percentages of Black users were screened through ads on Jack'd, TrafficJunky, and Google search; for Hispanic/Latino users, Google search, Grindr, Facebook, and Instagram. Analyzing ad characteristics, we found ads that used suggestive content, animation, and included study or institution logos were associated with greater engagement. Ads that emphasized convenience of the research (e.g. mentioned participating "from home") and that depicted people of similar races/ethnicities were also associated with greater engagement among Black and Hispanic/Latino sexual minority men.ConclusionsWe found that advertisements on mainstream social media sites are most cost effective. Although gay-oriented dating platforms were much more effective at reaching the target population, they were considerably more expensive. We also identified ad characteristics that were particularly effective in engaging users. These results could inform the design of online public health outreach campaigns for similar populations to improve their engagement and reach. Findings also demonstrated the value of conducting focused research on the effectiveness of various online marketing strategies.

Dataset Information

A novel approach to conducting clinical trials in the community setting: utilizing patient-driven platforms and social media to drive web-based patient recruitment.

Background

Methods

Results

Conclusions

Publications

A novel approach to conducting clinical trials in the community setting: utilizing patient-driven platforms and social media to drive web-based patient recruitment.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets