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: 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.

Reconnect on Facebook: The Role of Information Seeking Behavior and Individual- and Relationship-Level Factors.

Social network sites (SNSs) such as Facebook function as both venues for reconnecting with associates from a user's past and sources of social information about them. Yet, little is known about what factors influence the initial decision to reconnect with a past associate. This oversight is significant given that SNSs and other platforms provide an abundance of social information that may be utilized for reaching such decisions. The present study investigated the links among relational reconnection, information seeking (IS) behavior, and individual- and relationship-level factors in user decisions to reconnect on Facebook. A national survey of 244 Facebook users reported on their most recent experience of receiving a friend request from someone with whom they had been out of contact for an extended period. Results indicated that uncertainty about the potential reconnection partner and forecast about the reconnection's potential reward level significantly predicted IS behavior (passive on both target and mutual friends' SNS pages as well as active). However, the emergence of their two-way interaction revealed that the forecasts moderated the IS-uncertainty link on three of the strategies (extractive, both passive approaches). Moreover, social anxiety, sociability, uncertainty about the partner, the forecast about the reconnection's reward level, and extractive and passive (target SNS pages) strategies significantly predicted user decisions to reconnect. Future directions for research on relational reconnection on SNSs are offered.