ASPO Abstracts

Authors: Padamsee TJ

Category: Behavioral Science & Health Communication
Conference Year: 2020

Abstract Body:
Background and Purpose: Research on risk-reduction decision making among women at high risk of breast cancer rarely addresses minority groups, despite indications they may face additional burdens at every stage. Because most high-risk women are not in high-risk clinical care, effective prevention research requires recruitment beyond clinical populations. Methods: The Daughter, Sister, Mother Project has collected qualitative and quantitative data from high-risk African American and White women not in clinical care. Non-clinical recruitment sites include social media, volunteer databases, and community organizations. Results: These recruitment methods present unique challenges for which we have developed specific solutions. (1) Risk prediction modeling. Because the individual risk level of women recruited through non- clinical methods is usually unknown, risk prediction modeling must be built into data collection. Telephone screening allows risk prediction modeling before enrollment but requires multiple contact points. Collecting risk- related information within an interview or survey makes data collection possible within a single interaction, but requires risk-prediction modeling and sample trimming afterward. (2) Bots and fraudulent participants. Combining online data collection with social media recruitment facilitates involvement of participants not commonly drawn into biomedical research, but also exposes studies to various forms of fraud. To avoid wasting incentive funds and incorporating fraudulent information into datasets, we have developed methods to distinguish “real” from “fake” participants. These include programming methods, semi-automated and manual data-checking methods, and direct phone contact after data collection. (3) Ongoing connections. African American women not involved in high-risk clinical care may be highly-motivated but hesitant to participate in prevention research. Trust can be built through connections with community organizations, ongoing two-way contact with our research team, and returning findings to the communities where we collect data. Conclusions: Recruiting from non-clinical populations is a useful tool for cancer prevention research, and requires creative recruitment, data collection, and data cleaning methods.

Keywords: High-risk breast cancer Cancer health disparities Breast cancer prevention

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