The significant impact of education, poverty, and race on Internet-based research participant engagement

Sarah M Hartz, Tiffany Quan, Abiye Ibiebele, Sherri L Fisher, Emily Olfson, Patricia Salyer, Laura J Bierut, Sarah M Hartz, Tiffany Quan, Abiye Ibiebele, Sherri L Fisher, Emily Olfson, Patricia Salyer, Laura J Bierut

Abstract

Purpose: Internet-based technologies are increasingly being used for research studies. However, it is not known whether Internet-based approaches will effectively engage participants from diverse racial and socioeconomic backgrounds.

Methods: A total of 967 participants were recruited and offered genetic ancestry results. We evaluated viewing Internet-based genetic ancestry results among participants who expressed high interest in obtaining the results.

Results: Of the participants, 64% stated that they were very or extremely interested in their genetic ancestry results. Among interested participants, individuals with a high school diploma (n = 473) viewed their results 19% of the time relative to 4% of the 145 participants without a diploma (P < 0.0001). Similarly, 22% of participants with household income above the federal poverty level (n = 286) viewed their results relative to 10% of the 314 participants living below the federal poverty level (P < 0.0001). Among interested participants both with a high school degree and living above the poverty level, self-identified Caucasians were more likely to view results than self-identified African Americans (P < 0.0001), and females were more likely to view results than males (P = 0.0007).

Conclusion: In an underserved population, engagement in Internet-based research was low despite high reported interest. This suggests that explicit strategies should be developed to increase diversity in Internet-based research.Genet Med 19 2, 240-243.

Figures

Figure 1
Figure 1
Education, poverty, gender and race impact participant engagement. (a) Viewing genetic ancestry results by participants who reported being “extremely” or “very” interested in viewing results varies by education and income. (b) Viewing genetic ancestry differs across gender and race among interested participants who completed high school and have a household income above the federal poverty level. Error bars represent 95% confidence intervals; P values are from logistic regression adjusted for age, gender, and race.

References

    1. Advisory Committee to the NIH Director. Digital health data in a million-person precision medicine initiative cohort. National Institutes of Health; 2015. .
    1. Hudson K, Lifton R, Patrick-Lake B. The precision medicine initiative cohort program-building a research foundation for 21st century medicine. In: Precision Medicine Initiative (PMI) Working Group Report to the Advisory Committee to the Director, ed; 2015. .
    1. Anderson N, Bragg C, Hartzler A, Edwards K. Participant-Centric Initiatives: Tools to Facilitate Engagement In Research. Appl Transl Genom 2012;1:25–29.
    1. Kaye J, Curren L, Anderson N, et al. From patients to partners: participant-centric initiatives in biomedical research. Nat Rev Genet 2012;13:371–376.
    1. Overby CL, Maloney KA, Alestock TD, et al. Prioritizing approaches to engage community members and build trust in biobanks: a survey of attitudes and opinions of adults within outpatient practices at the University of Maryland. J Pers Med 2015;5:264–279.
    1. Kuang H, Jin S, Thomas T, et al.; Reproductive Medicine Network. Predictors of participant retention in infertility treatment trials. Fertil Steril 2015;104:1236–43.e1.
    1. Couper MP, Alexander GL, Zhang N, et al. Engagement and retention: measuring breadth and depth of participant use of an online intervention. J Med Internet Res 2010;12:e52.
    1. Perrin A, Duggin M. American's Internet Access: 2000–2015. Pew Research Center; 2015. .
    1. Anderson M. Technology Device Ownership: 2015. . PEW Research Center; 2015.
    1. Bass PF 3rd, Wilson JF, Griffith CH. A shortened instrument for literacy screening. J Gen Intern Med 2003;18:1036–1038.
    1. US Census Bureau. 2010–2014 American Community Survey 5-Year Estimates. American FactFinder. Tables generated by Sarah Hartz: . Accessed 22 February 2016.
    1. Smith JC, Medalia C. Health insurance coverage in the United States: 2014. US Department of Commerce EaSA; 2015.
    1. Yancey AK, Ortega AN, Kumanyika SK. Effective recruitment and retention of minority research participants. Annu Rev Public Health 2006;27:1–28.
    1. Nicholson LM, Schwirian PM, Klein EG, et al. Recruitment and retention strategies in longitudinal clinical studies with low-income populations. Contemp Clin Trials 2011;32:353–362.

Source: PubMed

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