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

2019 ◽  
Author(s):  
Janelle Applequist ◽  
Cristina Burroughs ◽  
Artemio Ramirez ◽  
Peter A. Merkel ◽  
Marc E. Rothenberg ◽  
...  
Keyword(s):  
Social Media ◽  
Clinical Research ◽  
Rare Disease ◽  
Patient Recruitment ◽  
Research Approach ◽  
Marketing Theory ◽  
Disease Category ◽  
Web Based ◽  
Recruitment Methods ◽  
Research Studies

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 maladies. 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 that was created and edited based on qualitative user-testing. 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.

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

2020 ◽  
Author(s):  
Janelle Applequist ◽  
Cristina Burroughs ◽  
Artemio Ramirez ◽  
Peter A. Merkel ◽  
Marc E. Rothenberg ◽  
...  
Keyword(s):  
Social Media ◽  
Clinical Research ◽  
Rare Disease ◽  
Patient Recruitment ◽  
Research Approach ◽  
Marketing Theory ◽  
Disease Category ◽  
Web Based ◽  
Common Diseases ◽  
Research Studies

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 the 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.

Using Social Media to Increase the Recruitment of Clinical Research Participants

2018 ◽  
pp. 7181-7189
Author(s):  
Saliha Akhtar
Keyword(s):  
Clinical Trial ◽  
Social Media ◽  
Clinical Trials ◽  
Clinical Research ◽  
Recruitment Strategies ◽  
Primary Role ◽  
Trial Recruitment ◽  
Recruitment Methods ◽  
Pros And Cons ◽  
Clinical Trial Recruitment

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.

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

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Janelle Applequist ◽  
Cristina Burroughs ◽  
Artemio Ramirez ◽  
Peter A. Merkel ◽  
Marc E. Rothenberg ◽  
...  
Keyword(s):  
Social Media ◽  
Clinical Trials ◽  
Community Setting ◽  
Patient Recruitment ◽  
Web Based ◽  
Novel Approach

scholarly journals Trial Promoter: A Web-Based Tool for Boosting the Promotion of Clinical Research Through Social Media

2016 ◽  
Vol 18 (6) ◽  
pp. e144 ◽  
Author(s):  
Katja Reuter ◽  
Francis Ukpolo ◽  
Edward Ward ◽  
Melissa L Wilson ◽  
Praveen Angyan
Keyword(s):  
Social Media ◽  
Clinical Research ◽  
Web Based

scholarly journals Using Facebook Advertisements and Online Resources to Recruit Tattoo Artists for a Web-based Survey (Preprint)

2019 ◽  
Author(s):  
Jessica LC Sapp ◽  
Robert L Vogel ◽  
Joseph Telfair ◽  
Julie K Reagan
Keyword(s):  
Social Media ◽  
Online Survey ◽  
The United States ◽  
Survey Study ◽  
Traditional Methods ◽  
Recruitment Methods ◽  
Increased Risk ◽  
Online Advertisement ◽  
Effective Option ◽  
Research Studies

BACKGROUND Almost one-third of U.S. adults (29%) have a tattoo, and almost half (47%) of millennials reported having a tattoo. With more people getting tattoos, there is an increased risk for infectious diseases, skin infections, and allergic reactions. Tattoo artists can influence these health risks with their standards of practice, tattoo inks, and sterilization techniques. Although tattoos are becoming mainstream, it was unclear if tattoo artists would be a hard-to-reach population. Using social media sites represent a promising method for recruiting tattoo artists for online survey research studies. OBJECTIVE To evaluate various online platforms and traditional methods for recruiting tattoo artists into a descriptive, online survey study. METHODS From September 2015 to February 2016, tattoo artists who primarily tattooed in the United States were recruited using both online and traditional methods. Recruitment occurred via Facebook advertisements, Instagram, Twitter, website, online advertisement, emails, and postcards mailed to tattoo shops. RESULTS Recruitment methods resulted in 2332 respondents, of which 1845 answered question one, “Are you a tattoo artist?” Only 1571 were tattoo artists. Facebook advertisements recruited the most study participants. Facebook accounted for 1228 (78.17%) respondents who were tattoo artists. This number surpassed the next leading category of HTTP referer unknown, which had 268 (17.06%). The [removed for blinded manuscript] website recruited 45 (2.86%) tattoo artists while other online sources contributed to 28 (1.78%). Twitter and email had the lowest response rate with only 0.06% (n=1) each. CONCLUSIONS Social media sites enhanced survey participation, making it easier to reach tattoo artists nationwide. Of the recruitment methods used, Facebook advertisements were the most effective option, both for cost and recruitment rates. This study’s findings extend previous research studies that demonstrated the timeliness, ease, and effectiveness of using Facebook advertisements for recruitment.

Using Social Media to Increase the Recruitment of Clinical Research Participants

2019 ◽  
pp. 587-597
Author(s):  
Saliha Akhtar
Keyword(s):  
Clinical Trial ◽  
Social Media ◽  
Clinical Trials ◽  
Clinical Research ◽  
Recruitment Strategies ◽  
Primary Role ◽  
Trial Recruitment ◽  
Recruitment Methods ◽  
Pros And Cons ◽  
Clinical Trial Recruitment

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.

scholarly journals Designing research studies in writer’s cramp dystonia: an analysis of automated writing measures

2021 ◽  
Author(s):  
Noreen Bukhari-Parlakturk ◽  
Michael Lutz ◽  
Alec McConnell ◽  
Hussein Al-Khalidi ◽  
Joyce En-Hua Wang ◽  
...  
Keyword(s):  
Clinical Research ◽  
Sample Size ◽  
Rare Disease ◽  
Sensitivity And Specificity ◽  
Healthy Subjects ◽  
Rating Scales ◽  
Research Study ◽  
High Sensitivity ◽  
Clinical Research Study ◽  
Research Studies

ABSTRACTBackgroundWriter’s cramp (WC) dystonia presents with abnormal postures during the task of writing and is an ideal dystonia subtype to study disease mechanisms for all forms of focal dystonia. Development of novel therapies is contingent on identifying sensitive and specific measures that can relate to the clinical syndrome and achieve a realistic sample size to power clinical research study for a rare disease. Although there have been prior studies employing automated measures of writing kinematics, it remains unclear which measures can distinguish WC subjects with high sensitivity and specificity and how these measures relate to clinician rating scales and patient-reported disability. The goal of this study was to: 1-identify automated writing measures that distinguish WC from healthy subjects, 2-measure sensitivity and specificity of these automated measures as well as their association with established dystonia rating scales, and 3-determine the sample size needed for each automated measure to power a clinical research study.Methods21 WC dystonia and 22 healthy subjects performed a sentence-copying assessment on a digital tablet in a kinematic software and hand recognition software. The sensitivity and specificity of automated measures was calculated using a logistic regression model. Measures were then correlated with examiner and patient rating scales. Power analysis was performed for 2 clinical research designs using these automated measures.ResultsOf the 23 automated writing measures analyzed, only 3 measures showed promise for use in a clinical research study. The automated measures of writing legibility, duration, and peak acceleration were able to distinguish WC from healthy controls with high sensitivity and specificity, correlated with examiner-rated dystonia sub-score measures and demonstrated relatively smaller sample sizes suitable for research studies in a rare disease population.DiscussionWe identified novel automated writing outcome measures for use in clinical research studies of WC subjects which capture key aspects of the clinical disease and can serve as important readout of dystonia disease mechanism as well as future disease interventions.

scholarly journals The Search for Consumers of Web-Based Raw DNA Interpretation Services: Using Social Media to Target Hard-to-Reach Populations

10.2196/12980 ◽  
2019 ◽  
Vol 21 (7) ◽  
pp. e12980
Author(s):  
Tiernan J Cahill ◽  
Blake Wertz ◽  
Qiankun Zhong ◽  
Andrew Parlato ◽  
John Donegan ◽  
...  
Keyword(s):  
Social Media ◽  
Cost Effective ◽  
Third Party ◽  
Web Based ◽  
Social Media Platform ◽  
Recruitment Methods ◽  
Direct To Consumer ◽  
Social Media Platforms ◽  
Hard To Reach Populations ◽  
Media Platform

Background In recent years, there has been a proliferation of third-party Web-based services available to consumers to interpret raw DNA from direct-to-consumer genetic testing companies. Little is known about who uses these services and the downstream health implications. Identifying this hard-to-reach population of consumers for research raised questions about the most effective recruitment methods to undertake. Past studies have found that Web-based social media survey distribution can be cost-effective for targeting hard-to-reach populations, yet comparative efficacy information across platforms is limited. Objective The aim of this study was to identify the most effective Web-based strategies to identify and recruit the target population of direct-to-consumer genetic testing users who also made use of third-party interpretation services to analyze their raw genetic data. Web-based survey recruitment methods varying by social media platform and advertising method were compared in terms of cost-effectiveness and demographics of survey respondents. Methods A total of 5 Web-based survey distribution conditions were examined: 4 paid advertising services and 1 unpaid service. For the paid services, a 2x2 quasi-experimental design compared social media platforms (Facebook vs Twitter) and advertising tracking metrics (by click vs by conversion). The fifth unpaid comparison method consisted of study postings on the social media platform, Reddit, without any paid advertising. Links to identical Web-based versions of the study questionnaire were posted for 10 to 14 days for each of the distribution conditions, which allowed tracking the number of respondents that entered and completed the questionnaire by distribution condition. Results In total, 438 individuals were recruited to the study through all conditions. A nearly equivalent number of participants were recruited from paid campaigns on Facebook (n=159) and Twitter (n=167), with a smaller sample recruited on Reddit (n=112). Significantly more participants were recruited through conversion-tracking (n=222) than through click-tracking campaigns (n=104; Z=6.5, P<.001). Response rates were found to be partially driven by organic sharing of recruitment materials among social media users. Conversion tracking was more cost-effective than click tracking across paid social media platforms. Significant differences in terms of gender and age distributions were noted between the platforms and between the tracking metrics. Conclusions Web-based recruitment methods were effective at recruiting participants from a hard-to-reach population in a short time frame. There were significant differences in the effectiveness of various paid advertising techniques. Recruitment through Web-based communities also appeared to perform adequately, yet it may be limited by the number of users accessible in open community groups. Future research should evaluate the impact of organic sharing of recruitment materials because this appeared to play a substantial role in the observed effectiveness of different methods.

scholarly journals Experience With Direct-to-Patient Recruitment for Enrollment Into a Clinical Trial in a Rare Disease: A Web-Based Study

2017 ◽  
Vol 19 (2) ◽  
pp. e50 ◽  
Author(s):  
Jeffrey Krischer ◽  
Peter F Cronholm ◽  
Cristina Burroughs ◽  
Carol A McAlear ◽  
Renee Borchin ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Rare Disease ◽  
Patient Recruitment ◽  
Web Based

Digital zakāh campaign in time of Covid-19 pandemic in Indonesia: a netnographic study

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Fahmi Ali Hudaefi ◽  
Irfan Syauqi Beik
Keyword(s):  
Social Media ◽  
Theoretical Implication ◽  
Research Approach ◽  
Marketing Theory ◽  
Content Type ◽  
National Board ◽  
Software Analysis ◽  
Digital Contents ◽  
Virtual Events ◽  
Religious Obligation

Purpose Despite the COVID-19 recession, the collection of zakat (almsgiving) managed by the National Board of Zakat Republic of Indonesia (BAZNAS RI) has increased, especially during Ramaḍān 1441 Hijra. Previous works show a positive relationship between digital zakat campaign and zakat collection. This paper aims to study the means of digital zakat campaign during COVID-19 outbreak. This topic is theoretically and practically important in the emerging debate of Islamic marketing, notably in Islamic social finance field. Design/methodology/approach This paper uses a qualitative research approach. A case study is engaged in the selection of BAZNAS RI for a detailed discussion of a zakat organisation. Meanwhile, a netnographic approach is used to analyse the number of 549 posts from BAZNAS RI’s social media, which are Facebook, Instagram, Twitter and YouTube. Furthermore, a qualitative software analysis of NVivo 12 Plus is used in performing the analytical procedures. Findings This work explains the means of digital zakat campaign during COVID-19 outbreak with a case of BAZNAS RI. It is identified the number of 6 parent nodes and 64 child nodes from the analysis using NVivo 12 Plus. The authors’ parent nodes are “donation”, “infaq” (Islamic spending for charities), “Ramaḍān matters”, “ṣadaqah” (voluntary charity), “virtual events” and “zakat”. These nodes detail digital campaign of BAZNAS RI posted in its social media during COVID-19 period in Ramaḍān. A theoretical implication of inclusive marketing is derived from the analysis. It explains that the inclusiveness of digital contents is practically significant in campaigning zakat as a religious obligation that contributes to social and financial benefits. Research limitations/implications This paper does not claim a positivist perspective on the relationship between digital zakat campaign and zakat collection. Instead, this paper explores in-depth the practice of digital zakat campaign, which the previous study confirms its association with a muzakki’s (Muslims who are obliged to pay zakat) decision to pay zakat. Practical implications This paper establishes the Islamic marketing theory that is derived from industrial practices. The inclusiveness of digital contents in zakat campaign is critical in activating zakat as a religious obligation that authentically shapes the social and economic processes of a Muslim community. This theory is practically important for 'amils (employees) of zakat institution who work in the marketing division, chiefly to create such contents to post in social media. Social implications The authors’ node of zakat distribution for COVID-19 relief indicates the importance of a formalised zakat institution to actualise zakat’s role in handling socioeconomic problems. Thus, paying zakat formally in an authorised organisation may contribute to a greater social contribution and maṣlaḥah (public interest) than paying it informally without any effective measurement. Originality/value This study contributes to the novelty in the Islamic marketing debate within two folds. First, this paper is among the pioneers in studying digital zakat campaign during COVID-19 outbreak by using a netnographic approach. Therefore, a theoretical implication derived from industrial practices is contributed. Second, this paper details the steps in using NVivo 12 Plus to analyse the unstructured data sampled from the internet. The future studies may thus refer to this work to understand the application of netnography and the procedures in analysing data from social media using this software.

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