Dataset Information

A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study--The PRIDE Study.

ABSTRACT: OBJECTIVE:Sexual and gender minority (SGM) people are underrepresented in research. We sought to create a digital research platform to engage, recruit, and retain SGM people in a national, longitudinal, dynamic, cohort study (The PRIDE Study) of SGM health. MATERIALS AND METHODS:We partnered with design and development firms and engaged SGM community members to build a secure, cloud-based, containerized, microservices-based, feature-rich, research platform. We created PRIDEnet, a national network of individuals and organizations that actively engaged SGM communities in all stages of health research. The PRIDE Study participants were recruited via in-person outreach, communications to PRIDEnet constituents, social media advertising, and word-of-mouth. Participants completed surveys to report demographic as well as physical, mental, and social health data. RESULTS:We built a secure digital research platform with engaging functionality that engaged SGM people and recruited and retained 13 731 diverse individuals in 2 years. A sizeable sample of 3813 gender minority people (32.8% of cohort) were recruited despite representing only approximately 0.6% of the population. Participants engaged with the platform and completed comprehensive annual surveys- including questions about sensitive and stigmatizing topics- to create a data resource and join a cohort for ongoing SGM health research. DISCUSSION:With an appealing digital platform, recruitment and engagement in online-only longitudinal cohort studies are possible. Participant engagement with meaningful, bidirectional relationships creates stakeholders and enables study cocreation. Research about effective tactics to engage, recruit, and maintain active participation from all communities is needed. CONCLUSION:This digital research platform successfully recruited and engaged diverse SGM participants in The PRIDE Study. A similar approach may be successful in partnership with other underrepresented and vulnerable populations.

SUBMITTER: Lunn MR

PROVIDER: S-EPMC6696499 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

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A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study--The PRIDE Study.

Lunn Mitchell R MR Lubensky Micah M Hunt Carolyn C Flentje Annesa A Capriotti Matthew R MR Sooksaman Chollada C Harnett Todd T Currie Del D Neal Chris C Obedin-Maliver Juno J

Journal of the American Medical Informatics Association : JAMIA 20190801 8-9

<h4>Objective</h4>Sexual and gender minority (SGM) people are underrepresented in research. We sought to create a digital research platform to engage, recruit, and retain SGM people in a national, longitudinal, dynamic, cohort study (The PRIDE Study) of SGM health.<h4>Materials and methods</h4>We partnered with design and development firms and engaged SGM community members to build a secure, cloud-based, containerized, microservices-based, feature-rich, research platform. We created PRIDEnet, a ...[more]

PMID: 31162545

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Project description:BackgroundHIV continues to disproportionately impact sexual and gender minority youth (SGMY) in the United States. Public health efforts have increasingly focused on developing efficacious interventions to curb the spread of HIV among SGMY and help those living with HIV achieve and sustain viral suppression. However, recruiting and engaging SGMY in prevention and care interventions is challenging.ObjectiveDuring the past decade, gay dating apps have quickly emerged as popular web-based spaces in which SGMY congregate. Although the recruitment of SGMY through these apps has been commonly reported, advertisement is the typical modality used, and direct recruitment approaches are not adequately described. This study aims to describe the process for developing a direct recruitment protocol for use in gay dating apps.MethodsThe Adolescent Medicine Trials Network Comprehensive Adolescent Research and Engagement Studies is a community-based research program consisting of 3 interrelated studies testing scalable behavioral interventions to improve HIV prevention and care engagement among youth aged 12-24 years in Los Angeles and New Orleans. To supplement our in-person recruitment approaches for Comprehensive Adolescent Research and Engagement Studies, the New Orleans site formed a gay dating app recruitment team. In April 2018, the team developed a loosely structured protocol that included study-specific profiles and sample language to guide initial recruitment efforts. Two self-identified Black, gay cisgender male field recruiters field-tested the protocol on the popular gay dating app Jack'd. During the field test, the recruitment team met weekly to discuss the recruiters' experiences and user reactions. For example, we learned the importance of addressing concerns about study legitimacy and identifying appropriate ways to describe the study. We iteratively incorporated these lessons learned into the final protocol and developed a training program and tracking procedures before moving to full-scale implementation at both sites.ResultsAdhering to this protocol yielded 162 enrollments in New Orleans (332 total enrollments across the two sites) throughout the recruitment period (April 2018 to August 2019). Most of these participants were sexual minority cisgender males (91%), and the remainder were identified as members of gender minority groups. We outlined step-by-step instructions on training staff, engaging users, and scheduling and tracking recruitment activities.ConclusionsThis paper provides a practical guide for researchers and community-based providers to implement a gay dating app recruitment protocol. Our experience indicates that gay dating app recruitment is feasible and fruitful when the staff members are knowledgeable, flexible, honest, and respectful to the user. Perhaps the most salient lesson we learned in approaching gay dating app users is the importance of setting clear and transparent intentions without judgment. As gay dating apps continue to increase in popularity, researchers need to stay vigilant to changing formats and develop systematic approaches to harness their potential as invaluable recruitment strategies for SGMY.International registered report identifier (irrid)RR1-10.2196/28864.

Project description:PurposeSexual and gender minorities (SGMs) are underrepresented and information about SGMs is difficult to locate in national health surveillance data, and this limits identification and resolution of SGM health disparities. It is also not known how measures of sexual orientation and transgender-inclusive gender identity in health surveillance compare with best practice recommendations. This article reviews and summarizes the publicly available, English language, large-scale, rigorously sampled, national, international, and regional data sources that include sexual orientation or transgender-inclusive gender identity and compares measures with best practice guidelines.MethodsA systematic review was undertaken of national, international, state, and regional health surveillance data sources. Data sources that measured sexual orientation or transgender-inclusive gender identity and met seven inclusion criteria were included.ResultsForty-three publicly accessible national, international, and regional data sources included measures of sexual orientation and transgender-inclusive gender identity and health. For each data source, sampling design, sample characteristics, study years, survey questions, contact persons, and data access links are provided. Few data sources met best practice recommendations for SGM measurement: 14% measured all three dimensions of sexual orientation (identity, behavior, attraction) as recommended by the Sexual Minority Assessment Research Team. No data sources measured transgender-inclusive gender identity according to the Gender Identity in U.S. Surveillance-recommended two-step method of measuring sex assigned at birth and current gender identity.ConclusionsThis article provides a much needed detailed summary of extant health surveillance data sources that can be used to inform research about health risks and disparities among SGM populations. Future recommendations are for more rigorous measurement and oversampling to advance what is known about SGM health disparities and guide development of interventions to reduce disparities.

Project description:ImportanceLittle is known about the neurologic health needs of sexual and gender minority (SGM) individuals, and existing research indicates health care disparities for this group.ObjectiveTo describe the current state of science in SGM neurology and highlight areas of knowledge and gaps to guide future research.Evidence reviewAll articles published before April 12, 2020, in PubMed, Embase, Web of Science, PsycInfo, CINAHL, and BIOSIS Previews were searched using a search string encompassing SGM descriptors and neurologic disorders. A total of 8359 items were found and entered into EndNote, and 2921 duplicates were removed. A blind title and abstract review was performed followed by full-text review in duplicate, with conflicts settled through consensus, to identify 348 articles eligible for data abstraction. Articles presenting primary data about an identified adult SGM population addressing a clinical neurology topic were included. Descriptive statistics were used for abstracted variables.FindingsOf 348 studies, 205 (58.9%) were case reports or series, 252 (72.4%) included sexual minority cisgender men, and 247 (70.9%) focused on HIV. An association was found between autism spectrum disorder and gender dysphoria in 9 of 16 studies (56.3%), and a higher risk of ischemic stroke in transgender women was shown in other studies. Literature in neuroinfectious disease, the most common topic, largely focused on HIV (173 of 200 studies [86.5%]). Findings in other neurologic topics were limited by lack of data.Conclusions and relevanceIn this rigorous compendium of SGM neurology literature, several deficiencies were found: most studies focused on a limited breadth of neurologic pathology, included only a portion of the overall SGM community, and did not assess other aspects of sociodemographic diversity that may contribute to disparities in health care access and outcomes among SGM individuals. Expanding neurologic research to include broader representation of SGM individuals and incorporating sociodemographic factors, like race/ethnicity and socioeconomic status, are essential steps toward providing equitable neurologic care for this community.

Project description:ImportanceAdvance care planning (ACP) can promote patient-centered end-of-life (EOL) care and is intended to ensure that medical treatments are aligned with patient's values. Sexual and gender minority (SGM) people face greater discrimination in health care settings compared with heterosexual, cisgender people, but it is unknown whether such discrimination occurs in ACP and how it might affect the ACP experiences of SGM people.ObjectivesTo increase understanding of barriers and facilitators of ACP facing SGM individuals.Design, setting, and participantsThis mixed-methods national study of ACP included a telephone survey of self-identified SGM and non-SGM participants in a nationally representative sample drawn from a larger omnibus national panel by SSRS. Qualitative interviews were conducted with a subset of survey participants who identified as SGM. Data were collected from October 2020 to March 2021.ExposuresSelf-identified SGM.Main outcomes and measuresThe survey included 4 items from the validated ACP Engagement Survey, adapted to capture experiences of discrimination. Interviews asked about participants' experiences with ACP, including the appointment of medical decision-makers, sharing preferences, and experiences within the health care system more broadly.ResultsA total of 603 adults participated in the survey, with 201 SGM individuals (mean [SD] age, 45.7 [18.7] years; 101 [50.2%] female; 22 [10.9%] Black, 37 [18.4%] Hispanic, and 140 [69.7%] White individuals) and 402 non-SGM individuals (mean [SD] age, 53.7 [19.2] years; 199 [49.5%] female; 35 [8.7%] Black, 41 [10.2%] Hispanic, and 324 [80.6%] White individuals). Regarding reasons for not completing ACP, SGM respondents, compared with non-SGM respondents, were more likely to say "I don't see the need" (72 [73.5%] vs 131 [57.2%], P = .006) and "I feel discriminated against by others" (12 [12.2%] vs 6 [2.6%], P < .001). Of 25 completed interviews among SGM participants, 3 main themes were identified: how fear and experiences of discrimination affect selection of clinicians and whether to disclose SGM identity; concerns about whether EOL preferences and medical decision-makers would be supported; and a preference to discuss EOL decisions and values outside of clinical settings.Conclusions and relevanceThis study found that fear of disclosing sexual orientation or gender identity information and discrimination are important barriers to ACP for SGM in clinical settings, but discussions of preferences and values still occur between many SGM people and medical decision-makers. More SGM-specific patient-centered care might better support these discussions within the health care system. Furthermore, health systems can facilitate improved engagement by supporting clinician sensitivity training, including guidance on documentation and requirements.

Project description:INTRODUCTION:Compared with heterosexual, cisgender populations, sexual and gender minority (SGM) people are more likely to suffer from serious health conditions and insufficient access to health services. Primary care is at the frontlines of healthcare delivery; yet, few clinics have resources or mechanisms in place to meet SGM patient needs. This developmental study protocol focuses on reducing health disparities among SGM patients by identifying, adapting and developing SGM practice guidelines/recommendations and implementation strategies for primary care clinics in urban and rural New Mexico. Using input from patients, healthcare advocates and providers, and researchers, the study will pilot a practice parameter and implementation toolkit to promote SGM-specific cultural competence at multiple service delivery levels. METHODS AND ANALYSIS:We will recruit providers/staff from four Federally Qualified Health Centers (FQHCs) serving ethnically and geographically diverse communities. Incorporating the Implementation of Change Model and an intersectionality perspective, data collection includes a systematic review of SGM-specific practice guidelines/recommendations, focus groups and semistructured interviews, quantitative surveys and the Nominal Group Technique (NGT) with providers/staff. We will categorise guidelines/recommendations identified through the review by shared elements, use iterative processes of open and focused coding to analyse qualitative data from focus groups, interviews and the NGT, and apply descriptive statistics to assess survey data. Findings will provide the foundation for the toolkit. Focus groups with SGM patients will yield supplemental information for toolkit refinement. To investigate changes in primary care contexts following the toolkit's pilot, we will undertake systematic walkthroughs and document review at the FQHCs, analysing these data qualitatively to examine SGM inclusiveness. The structured data-informed Plan-Do-Study-Act method will enable further revision of the toolkit. Finally, focus groups, interviews and quantitative surveys with providers/staff will highlight changes made in the FQHCs to address SGM patient needs, barriers to sustainment of changes, satisfaction, acceptability, usability and feasibility of the toolkit. ETHICS AND DISSEMINATION:The study has been reviewed and approved by the Pacific Institute for Research and Evaluation Institutional Review Board. Informed consent will be obtained from all participants before their involvement in research activities begins. Study results will be actively disseminated through peer-reviewed journals, conference presentations, social media and the internet, and community/stakeholder engagement activities.

Dataset Information

A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study--The PRIDE Study.

Publications

A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study--The PRIDE Study.

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