Reaching the "Hard-to-Reach" Sexual and Gender Diverse Communities for Population-Based Research in Cancer Prevention and Control: Methods for Online Survey Data Collection and Management

Katie J Myers; Talya Jaffe; Deborah A Kanda; V Shane Pankratz; Bernard Tawfik; Emily Wu; Molly E McClain; Shiraz I Mishra; Miria Kano; Purnima Madhivanan; Prajakta Adsul

doi:10.3389/fonc.2022.841951

Reaching the "Hard-to-Reach" Sexual and Gender Diverse Communities for Population-Based Research in Cancer Prevention and Control: Methods for Online Survey Data Collection and Management

Front Oncol. 2022 Jun 8:12:841951. doi: 10.3389/fonc.2022.841951. eCollection 2022.

Authors

Katie J Myers¹, Talya Jaffe¹, Deborah A Kanda¹, V Shane Pankratz^{1

2}, Bernard Tawfik^{1

2}, Emily Wu^{1

3}, Molly E McClain⁴, Shiraz I Mishra^{1

5}, Miria Kano^{1

2}, Purnima Madhivanan^{6

7

8}, Prajakta Adsul^{1

2}

Affiliations

¹ Comprehensive Cancer Center, University of New Mexico, Albuquerque, NM, United States.
² Department of Internal Medicine, School of Medicine, University of New Mexico, Albuquerque, NM, United States.
³ Department of Obstetrics and Gynecology, School of Medicine, University of New Mexico, Albuquerque, NM, United States.
⁴ Department of Family and Community Medicine, School of Medicine, University of New Mexico, Albuquerque, NM, United States.
⁵ Department of Pediatrics, School of Medicine, University of New Mexico, Albuquerque, NM, United States.
⁶ Department of Health Promotion Sciences, Mel & Enid Zuckerman College of Public Health University of Arizona, Tucson, AZ, United States.
⁷ Comprehensive Cancer Center, University of Arizona, Tucson, AZ, United States.
⁸ Public Health Research Institute of India, Mysuru, India.

Abstract

Purpose: Around 5% of United States (U.S.) population identifies as Sexual and Gender Diverse (SGD), yet there is limited research around cancer prevention among these populations. We present multi-pronged, low-cost, and systematic recruitment strategies used to reach SGD communities in New Mexico (NM), a state that is both largely rural and racially/ethnically classified as a "majority-minority" state.

Methods: Our recruitment focused on using: (1) Every Door Direct Mail (EDDM) program, by the United States Postal Services (USPS); (2) Google and Facebook advertisements; (3) Organizational outreach via emails to publicly available SGD-friendly business contacts; (4) Personal outreach via flyers at clinical and community settings across NM. Guided by previous research, we provide detailed descriptions on using strategies to check for fraudulent and suspicious online responses, that ensure data integrity.

Results: A total of 27,369 flyers were distributed through the EDDM program and 436,177 impressions were made through the Google and Facebook ads. We received a total of 6,920 responses on the eligibility survey. For the 5,037 eligible respondents, we received 3,120 (61.9%) complete responses. Of these, 13% (406/3120) were fraudulent/suspicious based on research-informed criteria and were removed. Final analysis included 2,534 respondents, of which the majority (59.9%) reported hearing about the study from social media. Of the respondents, 49.5% were between 31-40 years, 39.5% were Black, Hispanic, or American Indian/Alaskan Native, and 45.9% had an annual household income below $50,000. Over half (55.3%) were assigned male, 40.4% were assigned female, and 4.3% were assigned intersex at birth. Transgender respondents made up 10.6% (n=267) of the respondents. In terms of sexual orientation, 54.1% (n=1371) reported being gay or lesbian, 30% (n=749) bisexual, and 15.8% (n=401) queer. A total of 756 (29.8%) respondents reported receiving a cancer diagnosis and among screen-eligible respondents, 66.2% reported ever having a Pap, 78.6% reported ever having a mammogram, and 84.1% reported ever having a colonoscopy. Over half of eligible respondents (58.7%) reported receiving Human Papillomavirus vaccinations.

Conclusion: Study findings showcase effective strategies to reach communities, maximize data quality, and prevent the misrepresentation of data critical to improve health in SGD communities.

Keywords: cancer; cancer prevention; cancer screening (MeSH); gender identity (MeSH); recruitment; sexual orientation.