癌症幸存者经常承受与癌症相关的经济负担。由于缺乏性取向和性别认同数据收集以及社会耻辱，女同性恋、男同性恋、双性恋、跨性别者、酷儿、Plus (LGBTQ) 人群在多大程度上经历了与癌症相关的成本应对行为，例如众筹，目前尚不清楚。网络抓取以前曾被用来评估在线众筹中的不平等现象，但仅靠这些方法并不能充分吸引面临不平等的人群。我们描述了整合基于技术和社区参与的方法来探索 LGBTQ 癌症经济负担的方法过程为了以 LGBTQ 社区为中心，我们遵循社区参与指南，成立了一个由 LGBTQ 癌症幸存者、护理人员和参与研究每一步的专业人士组成的研究咨询委员会 (SAB)。 SAB 成员的参与度是通过季度 SAB 会议出席率和参与度调查来跟踪的。然后，我们使用网络抓取方法来提取在线众筹活动的数据集。研究团队遵循基于技术和社区参与的综合流程来开发和完善用于分析的术语词典。术语词典的开发和完善是为了识别与癌症和 LGBTQ 相关的众筹活动。根据会议出席率、会议参与度和匿名董事会反馈的指标，顾问委员会的参与度很高。与 SAB 合作，对术语词典进行了迭代编辑和完善。 LGBTQ 术语词典是由研究团队开发的，而癌症术语词典则是在现有词典的基础上精炼而成。顾问委员会和分析团队成员根据术语词典手动编码并执行质量检查，直到使用成对协议实现正确分类的高可信度。通过手动编码和质量检查的每个阶段，咨询委员会比分析团队单独发现了更多错误分类的活动。在完善 LGBTQ 术语词典时，分析团队发现了 11.8% 的错误分类，而 SAB 发现了 20.7% 的错误分类。每个术语词典最终确定后，LGBTQ 术语词典的配对一致性为 95%，而癌症术语词典的配对一致性为 89.2%。通过整合社区参与和基于技术的方法开发的分类工具更加准确，因为以公平为基础的方法，以 LGBTQ 的声音及其生活经历为中心。该范例表明，整合社区参与和基于技术的方法来研究不平等现象是高度可行的，并且具有 LGBTQ 经济负担研究之外的应用。©Austin R Waters、Cindy Turner、Caleb W Easterly、Ida Tovar、Megan Mulvaney、Matt Poquadeck、Hailey Johnston , 劳伦·V·加扎勒 (Lauren V Ghazal)、斯蒂芬·A·雷恩斯 (Stephen A Rains)、克里斯汀·G·克洛伊斯 (Kristin G Cloyes)、安妮·C·基尔霍夫 (Anne C Kirchhoff)、埃科·L·华纳 (Echo L Warner)。最初发表于 JMIR Cancer (https://cancer.jmir.org)，2023 年 10 月 30 日。

Cancer survivors frequently experience cancer-related financial burdens. The extent to which Lesbian, Gay, Bisexual, Transgender, Queer, Plus (LGBTQ+) populations experience cancer-related cost-coping behaviors such as crowdfunding is largely unknown, owing to a 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 adequately engage populations facing inequities.We describe the methodological process of integrating technology-based and community-engaged methods to explore the financial burden of cancer among LGBTQ+ individuals via online crowdfunding.To center the LGBTQ+ community, we followed community engagement guidelines by forming a study advisory board (SAB) of LGBTQ+ cancer survivors, caregivers, and professionals who were involved in every step of the research. SAB member engagement was tracked through quarterly SAB meeting attendance and an engagement survey. We then used web-scraping methods to extract a data set of online crowdfunding campaigns. The study team followed an integrated technology-based and community-engaged process to develop and refine term dictionaries for analyses. Term dictionaries were developed and refined in order to identify crowdfunding campaigns that were cancer- and LGBTQ+-related.Advisory board engagement was high according to metrics of meeting attendance, meeting participation, and anonymous board feedback. In collaboration with the SAB, the term dictionaries were iteratively edited and refined. The LGBTQ+ term dictionary was developed by the study team, while the cancer term dictionary was refined from an existing dictionary. The advisory board and analytic team members manually coded against the term dictionary and performed quality checks until high confidence in correct classification was achieved using pairwise agreement. Through each phase of manual coding and quality checks, the advisory board identified more misclassified campaigns than the analytic team alone. When refining the LGBTQ+ term dictionary, the analytic team identified 11.8% misclassification while the SAB identified 20.7% misclassification. Once each term dictionary was finalized, the LGBTQ+ term dictionary resulted in a 95% pairwise agreement, while the cancer term dictionary resulted in an 89.2% pairwise agreement.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.©Austin R Waters, Cindy Turner, Caleb W Easterly, Ida Tovar, Megan Mulvaney, Matt Poquadeck, Hailey Johnston, Lauren V Ghazal, Stephen A Rains, Kristin G Cloyes, Anne C Kirchhoff, Echo L Warner. Originally published in JMIR Cancer (https://cancer.jmir.org), 30.10.2023.