JMIR Publications

ABSTRACT

Background:

The extent to which LGBTQ+ populations experience cancer-related financial burden is largely unknown, owing to lack of sexual orientation and gender identity data collection and social stigma. Web-scraping has previously been used to evaluate inequities in online crowdfunding, but these methods alone do not center populations facing inequities.

Objective:

Describe the methodological process of integrating technology-based and community-engaged methods to explore LGBTQ+ cancer financial burden.

Methods:

Following community engagement guidelines, we formed a study advisory board of LGBTQ+ cancer survivors, caregivers, and professionals who were involved in every step of the research. We then used web-scraping methods to extract a dataset of online crowdfunding campaigns. The study team followed an integrated technology-based and community-engaged process described herein to develop and refine term dictionaries for analyses.

Results:

Along with the study advisory board, the term dictionaries were iteratively edited and refined. Further advisory board and analytic team members manually coded against the term dictionary and performed quality checks until 95% confidence in correct classification was achieved. Through each phase of manual coding and quality checks, the advisory board identified more misclassified campaigns than the analytic team alone. Advisory board engagement was high according to metrics of meeting attendance, meeting participation, and anonymous board feedback.

Conclusions:

The classification tools developed by integrating community-engaged and technology-based methods were more accurate because of the equity-based approach of centering LGBTQ+ voices and their lived experiences. This exemplar suggests integrating community-engaged and technology-based methods to study inequities is highly feasible and has applications beyond LGBTQ+ financial burden research.