ABSTRACT
BACKGROUND: Children often have limited understanding of clinical research and what they might expect from participating in a clinical study. Studies, however, suggest that multimedia delivery of medical and research information may promote greater understanding and engagement compared with standard written approaches. AIM: This study was designed to examine the effects of a novel interactive augmented reality (AR) program on children's understanding of clinical research. METHODS: Children (ages 7-13 years) were randomized to receive the basic information about clinical research using either a printed storybook (control) or the same storybook enhanced using a video see-through AR iPad program (AR) with embedded interactive quizzes. Children were interviewed to assess their understanding of the material before (pre-test) and after (post-test) receiving either of the randomized interventions. Both parents and children completed short surveys to measure their perceptions of the information delivery. RESULTS: Ninety-one parent/child dyads were included in the analysis. There were no differences between the control and AR children's pre-test understanding of the research information. However, both groups demonstrated significant and similar improvements in post-test understanding. Parents of children in the AR group found the information to be of higher quality and greater clarity compared with the control group, and 91.7% of children in the AR group found the inclusion of interactive quizzes to be helpful. Both parents and children found the AR program very easy to use and 85.0 % and 71.2%, respectively, indicated that if recruited for a future study that they would prefer information delivered using some type of iPad AR program together with a discussion with the researcher. CONCLUSIONS: Results demonstrated the importance of providing children and parents with information in an easy to read and visually compelling manner. Although both groups demonstrated improved understanding, children and their parents preferred the AR program and reported a preference for receiving information using computer-based technology. Given the seemingly insurmountable challenge of keeping children and families engaged in health research related information exchange, the use of AR would appear to provide a novel and effective vehicle for enhancing children's and parents assimilation and understanding of research (and medical) information and as a potential tool to optimize the informed consent and assent processes. RELEVANCE FOR PATIENTS: This study reinforces the importance in providing information to research participants and patients in an easy-to-read and visually salient manner. Although the AR program used in this study did not result in an increased level of understanding, AR was deemed the preferred method of information delivery. It is hoped that the results of this study will serve as a platform for future studies.
ABSTRACT
Successful social media recruitment requires specific expertise and constant upkeep, placing an inordinate burden on study teams. Over half of the study teams at the University of Michigan (U-M) surveyed about recruitment assistance needs indicated that they wanted to use social media as a recruitment strategy, but lacked the expertise to do so. We thus built a service to centralize social media recruitment across the university. This involved assembling the right expertise, creating a centralized social media profile, creating linkages to other digital recruitment platforms, building the financial structure, and operationalizing the service. So far, we have helped 94 study teams launch social media campaigns on Facebook and Instagram. These campaigns resulted in 1,653,675 users being reached, of which 20,546 users actively showed interest in participating in the corresponding studies. We followed 18 studies further, who reported a total of 345 social media participants as being enrolled, resulting in an average cost-per-contact (CPC) of $8.72 and an average cost-per-enrollee (CPE) of $55.21. The combination of communication expertise, streamlined administrative processes, and linkages to a centralized research participation registry has allowed us to help a large number of study teams seamlessly engage broad and diverse populations.
ABSTRACT
INTRODUCTION: UMHealthResearch is the University of Michigan's digital health research recruitment platform. It allows health researchers to connect efficiently with potentially eligible volunteers. METHODS: In 2013, the UMHealthResearch team strategically adapted a consumer behavior model, the buying funnel, to create the Digital Health Research Participation Funnel. The Digital Health Research Participation Funnel was then used to design a more active way for potential participants to volunteer for research studies through UMHealthResearch. RESULTS: In the 5 years before the redesign (2007-2012), an average of 1844 new accounts were created every year, whereas in the completed years after the redesign (2013-2016) the annual average improved to 3906, an increase of 111%. CONCLUSION: Although a randomized design was not possible in this instance, these preintervention and postintervention data suggest that the focus on user experience is an effective strategy for improving web-based research recruitment platforms.
ABSTRACT
In this article, we report on an effort to study the development and usefulness of a large, broad-use, opt-in biorepository for genomic research, focusing on three ethical issues: providing appropriate understanding, recruiting in ways that do not comprise autonomous decisions, and assessing costs versus benefits. We conclude the following: (a) Understanding can be improved by separating the task of informing subjects from documenting informed consent (Common Rule) and permission to use personal health information and samples for research (Health Insurance Portability and Accountability Act [HIPAA]); however, regulations might have to be changed to accommodate this approach. (b) Changing recruiting methods increases efficiency but can interfere with subject autonomy. (c) Finally, we propose a framework for the objective evaluation of the utility of biorepositories and suggest that more attention needs to be paid to use and sustainability.