Using mobile technology to engage sexual and gender minorities in clinical research
Using mobile technology to engage sexual and gender minorities in clinical research
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DOI：
10.1371/journal.pone.0216282
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发表时间：
2019-05-02
期刊：
影响因子：
3.7
通讯作者：
Obedin-Maliver, Juno
中科院分区：
文献类型：
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作者：
Lunn, Mitchell R.;Capriotti, Matthew R.;Obedin-Maliver, Juno
简介历史和当前的污名化和歧视经历迫使性少数群体 (SGM) 远离医疗保健和临床研究。由于医疗服务不足，他们面临着许多差异，使他们容易受到不良健康结果的影响。需要有效的方法来吸引和招募SGM人员参与临床研究。目的为了促进健康公平并了解SGM的健康需求，我们寻求设计一项名为PRIDE（身份与平等的人口研究）研究的在线、全国性、纵向队列研究，使SGM人员能够安全地参与，提供人口和健康数据，并产生SGM健康相关的研究想法。方法我们开发了一个iPhone移动应用程序（“应用程序”）来吸引和招募SGM人员进入PRIDE研究阶段1. 参与者完成了人口统计和健康调查，并参与了对他们未来研究重要的 SGM 健康相关主题的异步讨论。结果 PRIDE 研究第一阶段获得了 18,099 名参与者的同意。其中，16,394 人提供了数据。超过 98% 的人认为自己是性少数群体，超过 15% 的人认为自己是性别少数群体。样本在性取向、性别认同、年龄、种族、民族、地理位置、教育程度和个人收入方面具有多样性。参与者完成了 24,022 项调查，提供了 3,544 个对他们来说重要的健康主题，并投了 60,522 票来表明他们对特定健康主题的看法。结论我们开发了一款 iPhone 应用程序，招募 SGM 成年人并为一项新的全国在线队列研究收集人口和健康数据。数字参与功能使参与者能够成为研究开发过程中忠诚的利益相关者。我们相信，这是第一次使用移动应用程序专门吸引和招募大量代表性不足的人群进行临床研究。类似的方法在吸引和招募其他弱势群体参与临床研究方面可能是成功、方便且具有成本效益的。
IntroductionHistorical and current stigmatizing and discriminatory experiences drive sexual and gender minority (SGM) people away from health care and clinical research. Being medically underserved, they face numerous disparities that make them vulnerable to poor health outcomes. Effective methods to engage and recruit SGM people into clinical research studies are needed.ObjectivesTo promote health equity and understand SGM health needs, we sought to design an online, national, longitudinal cohort study entitled The PRIDE (Population Research in Identity and Disparities for Equality) Study that enabled SGM people to safely participate, provide demographic and health data, and generate SGM health-related research ideas.MethodsWe developed an iPhone mobile application ("app") to engage and recruit SGM people to The PRIDE Study-Phase 1. Participants completed demographic and health surveys and joined in asynchronous discussions about SGM health-related topics important to them for future study.ResultsThe PRIDE Study-Phase 1 consented 18,099 participants. Of them, 16,394 provided data. More than 98% identified as a sexual minority, and more than 15% identified as a gender minority. The sample was diverse in terms of sexual orientation, gender identity, age, race, ethnicity, geographic location, education, and individual income. Participants completed 24,022 surveys, provided 3,544 health topics important to them, and cast 60,522 votes indicating their opinion of a particular health topic.ConclusionsWe developed an iPhone app that recruited SGM adults and collected demographic and health data for a new national online cohort study. Digital engagement features empowered participants to become committed stakeholders in the research development process. We believe this is the first time that a mobile app has been used to specifically engage and recruit large numbers of an underrepresented population for clinical research. Similar approaches may be successful, convenient, and cost-effective at engaging and recruiting other vulnerable populations into clinical research studies.