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2.
Genet Med ; 21(10): 2371-2380, 2019 10.
Article in English | MEDLINE | ID: mdl-30930462

ABSTRACT

PURPOSE: Recruitment of participants from diverse backgrounds is crucial to the generalizability of genetic research, but has proven challenging. We retrospectively evaluated recruitment methods used for a study on return of genetic results. METHODS: The costs of study design, development, and participant enrollment were calculated, and the characteristics of the participants enrolled through the seven recruitment methods were examined. RESULTS: A total of 1118 participants provided consent, a blood sample, and questionnaire data. The estimated cost across recruitment methods ranged from $579 to $1666 per participant and required a large recruitment team. Recruitment methods using flyers and staff networks were the most cost-efficient and resulted in the highest completion rate. Targeted sampling that emphasized the importance of Latino/a participation, utilization of translated materials, and in-person recruitments contributed to enrolling a demographically diverse sample. CONCLUSIONS: Although all methods were deployed in the same hospital or neighborhood and shared the same staff, each recruitment method was different in terms of cost and characteristics of the enrolled participants, suggesting the importance of carefully choosing the recruitment methods based on the desired composition of the final study sample. This analysis provides information about the effectiveness and cost of different methods to recruit adults for genetic research.


Subject(s)
Clinical Trials as Topic/economics , Genetic Testing/economics , Patient Selection/ethics , Adult , Clinical Trials as Topic/methods , Costs and Cost Analysis , Ethnicity , Female , Genomics/economics , Genomics/methods , Humans , Male , Mass Screening/economics , Middle Aged , Research Design , Retrospective Studies
3.
AMIA Annu Symp Proc ; 2019: 923-932, 2019.
Article in English | MEDLINE | ID: mdl-32308889

ABSTRACT

Genomic medicine has created an urgent need for scalable genomic education. One promising approach is self-guided learning platforms. Understanding how these platforms are used is critical to guide their effective development and implementation. This study contributes a log-based method to study user engagement with online genomic educational videos among participants in a genomic screening study. We collected baseline demographics, logged participant usage and compared pre- and post-education genomic knowledge. Participants (N=390) who chose website access differed from those who declined access (N=81) and were more likely to be non-Latino, English speaking, younger, and have higher educational attainment. Only 45% who accessed the website viewed at least one video. The average video exposure time was 12 minutes. Longer exposure was not associated with an improvement in the user's genomic knowledge. Our study and future studies of user analytics should be used to guide the development of effective, scalable genomic education methods.


Subject(s)
Education, Distance , Genomics/education , Internet , Patient Education as Topic/methods , Adult , Education, Distance/methods , Female , Humans , Male , Middle Aged , Regression Analysis , Socioeconomic Factors , Video Recording
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