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

BMC Medical Research Methodology

Bruce Trapnell¹  Marc E. Rothenberg¹  Mustafa Sahin²  Jeffrey P. Krischer³  Cristina Burroughs³  Robert J. Desnick⁴  Peter A. Merkel⁵  Janelle Applequist⁶  Artemio Ramirez⁶ 

[1] Department of Internal Medicine, University of Cincinnati College of Medicine, Medical Science Building;F.M. Kirby Neurobiology Center, Boston Children’s Hospital, Center for Life Science;Health Informatics Institute, University of South Florida;Icahn School of Medicine at Mount Sinai;Rheumatology Division, University of Pennsylvania;Zimmerman School of Advertising and Mass Communications, University of South Florida;

关键词: Patient recruitment;    Research recruitment;    Clinical research;    Web-based recruitment;    Social media;    Social media recruitment;   

DOI  :  10.1186/s12874-020-00926-y

来源: DOAJ

【 摘 要 】

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.

【 授权许可】

Unknown