ABSTRACT
Sexual and gender minority (SGM) communities face stigma and discrimination that impact all aspects of health. To better understand and improve their urologic health outcomes, we must study SGM patients as a distinct population and pursue research on outcomes identified as priorities to SGM communities. Patient-centered outcomes research (PCOR) is a methodology which is increasingly familiar to urologists and is crucial to adequately addressing SGM health in future urological research. We review existing literature focused on urologic outcomes of SGM populations and highlight specific PCOR initiatives built on SGM community engagement.
Sexual and gender minority communities (SGM) are a diverse population that includes, but is not limited to, people who identify as lesbian, gay, bisexual, transgender, non–binary, and gender non–conforming.
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Table 1 outlines many common terms used to describe this population and is a testament to its heterogeneity. It is important to note that some people may be considered part of the SGM community by providers who do not necessarily identify as SGM themselves (ie men who have sex with men (MSM) who do not identify as gay or bisexual). People with differences of sex development (DSD, or intersex) may also identify as SGM and face unique challenges related to genitourinary health that require dedicated attention. Although many of the concepts we present here may be applied to research on people with DSD, the specific issues faced by this population are beyond the scope of this review.Sexual and gender minority populations in NIH-supported research sexual and gender minority research office: national institutes of health; 2019 Accessed from: https://grants.nih.gov/grants/guide/notice-files/NOT-OD-19-139.html. Accessed January 7, 2021.
Table 1Sexual and gender minority vocabulary
| Lesbian, gay, and bisexual | Sexual orientation, (sexual attraction, sexual behavior, and self-identification) |
| Lesbian and gay | Attraction, behavior, and identities are oriented toward people of the same gender |
| Bisexual | People whose attraction, behavior, or both is toward people of both the same and different genders |
| Heterosexual or straight | Attraction and behavior are oriented toward people of a different gender |
| Men who have sex with men (MSM) | Men who have male sexual partners regardless of sexual orientation |
| Asexual | People who do not experience sexual attraction. |
| Same-gender-loving | Often used in Black communities to describe non–heterosexual relationships |
| Queer | Common among younger people as a description of non–binary or non–heterosexual identity |
| Two Spirit | Used in many Native American communities to denote the fluidity of gender |
| Transgender | Gender identity, which is distinct from sexual orientation; identify as a sex or gender different from the sex they were assigned at birth |
| Transgender woman | Woman who was assigned male at birth |
| Transgender man | Man who was assigned female at birth |
| Non–binary, agender, bigender, genderqueer, gender fluid, and gender-nonconforming | Those who identify outside the categories of male or female. |
| Cisgender | Someone who is not transgender |
| Monosexual | Attracted to only one gender, such as straight, gay, and lesbian people; |
| Non–monosexual | Describes people attracted to more than 1 gender (including bisexual people) |
| Pansexual | Refers to people attracted to several genders. |
| Intersex and differences of sex development | Describe people born with primary or secondary sex characteristics that do not fit binary medical definitions of male or female reproductive or sexual anatomy |
*This table was adapted from Understanding the Well-Being of LGBTQI+ Populations (2020)
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SGM individuals face stigma and discrimination in daily personal life and throughout healthcare experiences, including from providers that can foster mistrust of the medical community, which translate into physical and mental health disparities well-defined in the literature.
3
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Structural stigma has been shown to have a dose dependent response on mortality among SGM individuals.5
This is best explained through the minority stress theory, which describes that SGM health disparities are in part due to stressors induced by stigma, prejudice, and discrimination; these create a hostile environment leading to internalized stigma, expectations of rejection and negative outcomes, and concealment, which thus affect health.6
In addition to being predisposed to poorer health outcomes through experienced discrimination, SGM patients have been shown to access many health services, including cancer screening, less than their cisgender, and heterosexual counterparts.7
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Urologists have a professional duty to diminish these disparities and ensure equitable, sensitive care for all patients. Furthermore, within the various domains of urology from sexual function to oncologic care, SGM patients may have distinct needs. These specific health concerns can go unaddressed for many reasons, including power dynamics in the patient-provider relationship, systemic barriers, and a paucity of SGM-specific literature to guide counseling in urologic care. The purpose of this review is to outline factors that contribute to urologic health disparities in SGM populations, identify current gaps in urologic research methods, and propose an effective strategy to move forward in developing research that meaningfully addresses needs of SGM communities.
THE CURRENT STATE OF SGM RESEARCH IN UROLOGY
In recent years, SGM health has gained increasing attention from funders including the National Institutes of Health (NIH), which has set aside dedicated funding to accelerate and increase participation in research for SGM populations.
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In 2015, the NIH created The Sexual & Gender Minority Research Office (SGMRO) to coordinate, develop, and further promote SGM scholarship. The Patient Centered Outcomes Research Institute (PCORI) has also acknowledged the unique health challenges facing SGM populations and has identified this group as a priority, investing $26 million into patient-centered outcomes research (PCOR) with SGM populations.10
PCORI's LGBT health portfolio works to address major disparities patient-centered outcomes research institute2018 [cited 2021 March 28, 2021]. Accessed from: https://www.pcori.org/blog/pcoris-lgbt-health-portfolio-works-address-major-disparities. Accessed January 7, 2021.
We reviewed literature from 2012 to 2021 pertaining to SGM urologic health to assess the subjects of studies performed and the research methods utilized. We conducted a systematic search of the English-language literature indexed in PubMed to identify studies within biomedical literature from clinicians, using keywords such as “LGBT urology,” “gay urology,” “lesbian urology,” and “transgender urology.” Articles included in this narrative review were those whose target population was SGM patients with focuses on urologic health. We excluded papers focused on gender-affirming surgery techniques and surgical outcomes. Each study was reviewed for overall subject matter, study methods, patient-reported outcome measures (PROMs) used, and whether patient-centered outcomes research (PCOR) methods were employed.
The focus of the 45 articles reviewed included prostate cancer diagnosis, management, and sexual function after treatment (n = 19, 40%); fertility (n = 14, 38%); sexual health including Peyronie's disease, erectile dysfunction (ED), and premature ejaculation (n = 8, 17%); bladder health, voiding behaviors, sexually transmitted infections, and lower urinary tract symptoms (n = 3, 6%); and general urologic care (n = 2, 5%). The methods of papers reviewed were varied and included survey-based studies (n = 13, 28%), reviews (n = 12, 26%), qualitative studies (n = 5, 11%), retrospective chart reviews (n = 4, 9%), analysis from population-based database (n = 3, 7%), case reports (n = 3, 7%), basic science research (n = 2, 4%), mixed methods (n = 2, 4%), scale validation (n = 2, 4%), community-based participatory research (n = 1, 2%), and meta-analysis (n = 1, 2%) (Table 2). Among the studies utilizing PROMs, 17 different scales were utilized, only 3 of which had been validated among SGM populations (Table 3).
Validated among SGM population
Table 2Type and subject of research and target population of references included in review
| Reference | Type of Research | Subject of Research | Target Population |
|---|---|---|---|
| Adeleye, et al (2019) 11 | Retrospective chart review | Fertility | Transgender |
| Adeleye, et al (2019) 12 | Basic science | Fertility | Transgender |
| Alford, et al (2020) 13 | Case report | Fertility | Transgender |
| Allensworth-Davies, et al (2016) 14 | Survey | CaP (diagnosis, management, sexual function after treatment) | LGB |
| Amarasekera, et al (2020) 15 | Online survey | CaP (diagnosis, management, sexual function after treatment) | LGB |
| Amarsekera, et al (2019) 16 | Review | CaP (diagnosis, management, sexual function after treatment) | LGB |
| Breyer, et al (2012) 17 | Online survey | Bladder health, voiding behaviors, STIs, and LUTS | LGB |
| Chandhoke, et al (2018) 18 | Case report | CaP (diagnosis, management, sexual function after treatment) | Transgender |
| Chen, et al (2018) 19 | Online survey | Fertility | Transgender |
| Chen, et al (2019) 20 | IDI | Fertility | Transgender |
| Cheng, et al (2019) 21 | Review | Fertility | Transgender |
| Chung, et al (2021) 22 | IDI | General urologic care | Transgender |
| Crangle, et al (2017) 23 | Survey | CaP (diagnosis, management, sexual function after treatment) | LGB |
| de Nie, et al (2020) 24 | Retrospective chart review | Fertility | Transgender |
| de Nie, et al (2020) 25 | Population-based study | CaP (diagnosis, management, sexual function after treatment) | Transgender |
| Deebel, et al (2017) 26 | Review | CaP (diagnosis, management, sexual function after treatment) | Transgender |
| Farrell, et al (2013) 27 | Mixed methods | Sexual health (Peyronie's, ED, premature ejaculation, etc.) | LGB |
| Fernandez-Crespo, et al (2021) 28 | Review | Sexual health (Peyronie's, ED, premature ejaculation, etc.) | LGB |
| Gaither, et al (2015) 29 | Survey | General urologic care | LGB |
| Hardacker, et al (2019) 30 | CBPR | Bladder health, voiding behaviors, STIs, and LUTS | LGB |
| Jiang, et al (2019) 31 | Basic science | Fertility | Transgender |
| Kelly, et al (2018) 32 | Review | CaP (diagnosis, management, sexual function after treatment) | LGB |
| Kleinmann, et al (2012) 33 | Review | CaP (diagnosis, management, sexual function after treatment) | LGB |
| Li, et al (2018) 34 | Retrospective chart review | Fertility | Transgender |
| Liu, et al (2019) 35 | Review | Fertility | Transgender |
| Ma, et al (2020) 36 | Population-based study | CaP (diagnosis, management, sexual function after treatment) | LGB |
| Martin-Tuite, et al (2021) 37 | Review | CaP (diagnosis, management, sexual function after treatment) | LGB |
| Matheson, et al (2017) 38 | Metanalysis | CaP (diagnosis, management, sexual function after treatment) | LGB |
| McConkey, et al (2018) 39 | IDI | CaP (diagnosis, management, sexual function after treatment) | LGB |
| Mehta, et al (2019) 40 | Mixed methods | CaP (diagnosis, management, sexual function after treatment) | LGB |
| Morvek, et al (2020) 41 | Review | Fertility | Transgender |
| Obedin-Maliver, et al (2019) 42 | Population-based study | Sexual health (Peyronie's, ED, premature ejaculation, etc.) | LGB |
| Parikh, et al (2020) 43 | Case report | Fertility | Transgender |
| Polter, et al (2019) 44 | Online survey | CaP (diagnosis, management, sexual function after treatment) | LGB |
| Rosser, et al (2016) 45 | IDI | CaP (diagnosis, management, sexual function after treatment) | LGB |
| Rosser, et al (2019) 46 | Review | CaP (diagnosis, management, sexual function after treatment) | LGB |
| Rosser, et al (2020) 47 | Online survey | CaP (diagnosis, management, sexual function after treatment) | LGB |
| Salter, et al (2021) 48 | Survey | Sexual health (Peyronie's, ED, premature ejaculation, etc.) | LGB |
| Shindel, et al (2011) 49 | Online survey | Sexual health (Peyronie's, ED, premature ejaculation, etc.) | LGB |
| Shindel, et al (2012) 50 | Online survey | Sexual health (Peyronie's, ED, premature ejaculation, etc.) | LGB |
| Shindel, et al (2012) 51 | Online survey | Sexual health (Peyronie's, ED, premature ejaculation, etc.) | LGB |
| Sterling, et al (2020) 52 | Review | Fertility | Transgender |
| Sturm, et al (2014) 53 | Online survey | Bladder health, voiding behaviors, STIs, and LUTS | WSW |
| Vedovo, et al (2020) 2 | Scale validation | Sexual health (Peyronie's, ED, premature ejaculation, etc.) | Transgender |
| Wang, et al (2020) 54 | Review | Fertility | Transgender |
CaP, Prostate Cancer; STI, Sexually Transmitted Infection, ED, Erectile Dysfunction; LUTS, Lower urinary tract symptoms; IDI, In-depth interview; LGB, Lesbian, Gay, or Bisexual
Table 3Scales used in references with survey-type research and indication of validation with SGM community
| Scale | Validated With SGM Community |
|---|---|
| PDQ (Peyronie's Disease Questionnaire) | No |
| SEAR. (Self-Esteem and Relationship Questionnaire) | No |
| CES-D (Center for Epidemiologic Studies-Depression) | No |
| IPSS (International Prostate Symptom Score) | No |
| PEDT (Premature Ejaculation Diagnostic Tool) | No |
| EPIC (Expanded Prostate Cancer Index Composite) | No |
| SF-12 (Short Form 12) | No |
| OAB-q (Overactive Bladder Questionnaire) | No |
| MacDonald and Anderson Social Stigma Scale | No |
| PDRQ-9 (Patient Doctor Relationship Questionnaire) | No |
| FSFI (Female Sexual Functioning Index) | No |
| RQ (Relationship Questionnaire) | No |
| IIRS (Illness Intrusiveness Rating Scale) | No |
| Partner or Spouse support scale from the Medical Outcomes Study | No |
| IIEF-MSM-EF (Erectile Function Domain Score of the International Index of Erection Function) | Yes |
| GSFI (Gay Sexual Functioning Inventory) | Yes |
| Outness Inventory | Yes |
Sexual health and dysfunction, genitourinary cancer diagnosis and treatment, voiding dysfunction, and fertility care have all been demonstrated to affect SGM patients in ways different from their heterosexual and cisgender counterparts.
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We found that current urology research including SGM populations has focused mainly on prostate cancer (ie sexual function after prostate cancer treatment, HIV diagnosis with prostate cancer, special screening considerations); bladder health, voiding behaviors, and LUTS with STIs; sexual dysfunction (ie Peyronie's disease, premature ejaculation, erectile dysfunction); and fertility preservation among transgender and gender non–binary (TGNB) patients. While these areas are important, broader urologic health concerns, and research priorities for these populations have not been adequately defined by patients themselves.A minority of the studies reviewed engaged SGM communities in the research process. In studies involving PROMs, the scales used were rarely validated within SGM populations, demonstrating both the need for PROM validation efforts in SGM populations, and greater efforts to utilize PROMs validated in SGM populations when available.
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Though this was not a systematic review, our aim was to highlight opportunities to address urologic health needs of SGM communities through patient-centered research methods, which appear to be underutilized. Below, we outline challenges, and opportunities as clinician-researchers approach SGM urologic disparities.IDENTIFYING SGM INDIVIDUALS IN CLINICAL RESEARCH SETTINGS
Provider Level Barriers
Due to the stigma SGM patient often face when accessing healthcare, many patients may be reluctant to divulge personal information in the clinical or research setting, which may have implications for care received or lead to bias in data collected. As a first step, it is imperative that all urology providers understand how to ascertain a nonjudgmental history on sensitive subjects to reduce stigma and promote equitable access to healthcare for this diverse population.
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In a study from 2018, almost half of sexual health providers surveyed stated they do not routinely ask their patients about their sexual orientation with the top 2 reasons being that (1) they did not think it was relevant to the patient's care and (2) that they thought the patient would self-disclose if they wanted the provider to know.57
Placing this simple but often stigmatized task within the ownership of the patient may make them less likely to disclose important information to their provider. Additionally, when discussing these issues with patients, it is important for the physician to recognize and set aside any personal biases that could contribute to false assumptions and lead to discrimination. Thoughtfully discussing a patient's sexual orientation and gender identity in a non–judgmental manner is an opportunity for providers to demonstrate humility and competency. This also fosters trust between patients and providers.Lack of confidence and competence in this area stems from lack of education in urology residencies on SGM concerns, with many residencies offering no didactic content or clinical exposure to transgender health.
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Additionally, a recent survey study showed that provider knowledge of transgender healthcare had a negative correlation with transphobia; transphobia may be a barrier to educating providers on taking care of this population and should be addressed.59
Arguably, the nuances of how a person's gender identity and sexual orientation affect commonly treated urologic disorders are not well established, and further research is needed on this subject. Therefore, as we seek to better understand such disparities, all urologists and sexual health care providers should be comfortable asking their patients questions about gender identity and sexual orientation. Additionally, providers should foster supportive and inclusive environments through means including longitudinal cultural competency training for all staff, ensuring all patients are addressed by the correct name and pronouns, and placing visual clues of an accepting and safe space in the office.60
Systemic Barriers
In addition to the lack of identification at the provider level, there are systemic issues in identifying SGM population for inclusion in research. Informatic barriers attendant to chart reviews, searches within electronic health records, and use of existing surveillance databases further exacerbates health disparities among SGM patients. Gathering and documenting sexual orientation and gender identity (SOGI) data in electronic health records is consistent with federal efforts outlined under Section 4302 of the Patient Protection and Affordable Care Act. Despite the importance of SOGI data collection for clinical care, research and public health interventions, uptake remains low.
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SOGI data has not been consistently collected, and when it has, inconsistency in implementation and end-user error creates the potential for methodological issues in potential findings.26
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This signals to 2 lost opportunities: first, to recognize and utilize data of SGM people already present in urological research endeavors not specific to SGM populations; and second, the difficulty in operationalizing multicenter- and population-based research on urological needs specific to SGM patients. Promising work is underway to better operationalize collection and analysis of SOGI data, creating opportunities for researchers to adequately integrate SGM research into existing bioinformatics structures.63
PATIENT-CENTERED OUTCOME RESEARCH AND PRINCIPLES OF STAKEHOLDER ENGAGEMENT
Created in 2010 by the Patient Protection and Affordable Care Act, PCORIs mission is to help “people make informed health care decisions and improve health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader health care community.”
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The PCORI approach to patient-centered outcomes research: research fundamentals learning package interactive PDF patient-centered outcomes research institute Accessed from: https://www.pcori.org/engagement/research-fundamentals/pcori-approach-pcor. Accessed January 7, 2021.
PCOR is a research methodology that includes stakeholders defined as: patients, those who care for them, clinicians, advocates, payers, and others who are interested in outcomes that are meaningful to patients.
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PCOR draws from the framework of community-based participatory research (CBPR), a type of research in which community stakeholders are full and equal partners in all phases of the research process, from inception to completion.65
Within PCOR, the spectrum of stakeholder engagement varies from shared leadership to general project support, including shared-Principle Investigator or Co-Investigator status, Advisory Boards, individual consultants, Nonprofit/Community-based organization support, and other methods of engagement such as open community forms and interviews with key informants.66
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A mainstay of PCOR is qualitative and mixed-method approaches to "enable more robust capture and understanding of information from patients, caregivers, clinicians, and other stakeholders in research, thereby improving the strength, quality, and relevance of findings.”68
The PCORI website provides resources for conducting PCOR and stakeholder capacity building, including Research Fundamentals for researchers and other stakeholders.69
Research fundamentals: preparing you to successfully contribute to research: patient-centered outcomes research institute; Accessed from: https://www.pcori.org/engagement/research-fundamentals#content-6876. Accessed January 7, 2021.
Use of PCOR methods informs study feasibility and helps with patient accrual and retention.
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Furthermore, it has been shown to be successful in engaging socioeconomically and racially and ethnically diverse communities.71
Utilizing these methods increases the community's ownership of the research, thus improving adoption, maintenance, and sustainability of evidence-based interventions developed.72
IMPORTANCE OF PATIENT CENTERED OUTCOMES RESEARCH IN SGM POPULATIONS
Urologic PCOR is growing, especially in the fields of oncology, stone disease, and fertility.
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In fact, many research funding institutions including PCORI and NIH, as well as certain clinical guidelines committees now incorporate criteria of patient and other stakeholder engagement. PCOR places focus on the patient's beliefs, preferences, and needs while having patients as active and essential stakeholders in the research process from planning to dissemination. This allows for integration of the communities' input into research priorities, and thus ensures that the research conducted is relevant and conducted in an appropriate and meaningful way, while taking into account the complex needs of stakeholder groups.SGM research in urology is relatively new and expanding. Traditionally, SGM groups have not been involved in the process of creating research about their own health across disciplines.
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Exclusion of SGM individuals from professional training and advancement due to individual-level and systemic discrimination, and lack of knowledge of community needs among researchers, has led to research which the community of interest finds irrelevant or even harmful.When embarking on research on SGM urologic health disparities, we argue that centering patient, and community perspectives in the research process is critical to avoid perpetuating disparities. Doing so will identify topics of research that are not only important to the researchers or experts in the field but will also consider the unique experiences of this population that may lead to different priorities from those of majority populations. In order to advance research on SGM urologic health, we encourage best practices that include: (1) identification of SGM community-centered outcomes to appropriately identify differences in the SGM patient experience, and (2) engagement of SGM stakeholders as partners throughout the research process.
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Related specifically to transgender patients, gender-affirming care has existed within a particular patient-provider power dynamic which continues to impact research quality. Gender-affirming treatment was in many cases only offered to those who would undergo a prescribed set of interventions to 'complete' their transition as defined by external endpoints, including heterosexual orientation in their identified gender, agreeing to divorce current spouses, and being HIV negative.
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The impact of these rigid care pathways, described as gatekeeping, have been explored within Transgender Studies, a discipline with foundational texts describing the discrepancy between transgender subjectivity and clinically sanctioned presentation to care.77
,Spade D. Mutilating gender. New York, New York 2006. Further Information (JAMA style for chapter in edited book): Spade D. Mutilating gender. In: Stryker S, Whittle S, ed. The Transgender Studies Reader. Routledge; 2006:315-332. https://www.taylorfrancis.com/chapters/edit/10.4324/9780203955055-33/mutilating-gender-dean-spade. Accessed July 1, 2021
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It has been well documented that patients present in a manner that will allow them to access desired interventions, regardless of their true experiences.76
While intervention approval pathways have been updated in many settings, patients are still attuned to the possibility of being denied care for irrelevant reasons (ie identifying themselves to providers as transgender men or women, rather than voicing a non–binary gender identity).79
When research is reliant on patient report and care has not been taken to address power dynamics, there is significant concern that findings contain biased or factitious data.When it comes to including marginalized populations in PCOR, qualitative studies have demonstrated the importance of continuous engagement focused on building and maintaining trust.
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Key practical recommendations for meaningful engagement of patients in PCOR include: bringing the research into the communities, pre-engaging patients in the research from the beginning planning phase, providing education on what research is, keeping the communities up-to-date on the research conducted, publishing in an open-access format, and providing lay summaries of the results. Continuous community engagement throughout the research process has been shown to produce more meaningful results and also develop cultural competency among the researchers leading the work.PCOR INITIATIVES IN SGM HEALTH
Below, we describe initiatives that address health needs of SGM populations using PCOR principles.
PRIDE Study
The PRIDE study, a national longitudinal cohort study of SGM health, is an effort to address the difficulty of collecting longitudinal data specific to SGM populations through traditional means. The main feature of the study is a secure, cloud-based, online-only platform designed to longitudinally follow participants. PRIDE has successfully assembled a cohort of over 13,000 SGM participants for longitudinal health surveillance and ongoing recruitment in ancillary studies,
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and has continually integrated a formal participant advisory committee, PRIDEnet, to ensure that research is conducted in a manner that is equitable, transparent, and reflective of the diversity community. While the intention is for years of longitudinal data to accumulate, The PRIDE study has already begun sharing sexual, and reproductive health data gathered through the platform.82
Project STRONG
The PCORI-funded study, "Examining Health Outcomes for People who are Transgender," named by community stakeholders as Project STRONG (Study of Transition Outcomes and Gender), is an early example of PCOR in transgender health.
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As the largest study including TGNB people at the time of conduction, Project STRONG incorporated PCOR principles at every step of the research from inception to dissemination of results. The project had the broad goal of evaluating health outcomes for TGNB people who did and did not receive gender-affirming therapies. The stakeholder group involved at each step of the study process included TGNB patients, researchers, physicians, and other gender-affirming providers.Project STRONG used the advisory board and qualitative studies with transgender community members to define barriers and facilitators to engaging transgender people in research. The study team implemented these considerations throughout the research process while also publishing these results for others to consider.
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Through these same focus groups, the study developed a questionnaire to define outcomes of interest to the community including mental health, cancers, blood clots and strokes, and body image. Focus was given to content of the questionnaire along with vocabulary and terminology to use throughout the tool.Additionally, PCOR practices were further utilized to improve the methodology of how transgender health research is conducted. As previously mentioned, many of the EHRs make it difficult to identify TGNB patients within retrospective research. Project STRONG, with input from the advisory board, was able to develop a novel method for identifying TGNB patients in EHR-based research.
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In addition to methodological insights, Project STRONG resulted in numerous studies describing mental health outcomes,86
,87
barriers to medical and surgical treatment,88
and the association of cardiovascular and thrombotic events with hormone replacement therapies.89
This study exemplifies the rich impact of community stakeholder engagement from defining research priorities, through influencing methodology and study design.TRANS-ARC
The PCORI-funded Transgender and Non–Binary Surgery – Allied Research Collective (TRANS-ARC), aims to engage stakeholders in genital gender-affirming surgery (GGAS) in the research prioritization process to address gaps in GGAS outcomes research. These stakeholders include individuals who have had, considered, or are seeking GGAS, other TGNB community members and advocates, healthcare providers including surgeons and other members of the healthcare team, researchers, payers and device manufacturers. Acknowledging that the majority of studies on GGAS outcomes lack perspectives of patients or other stakeholders beyond surgeons and researchers, TRANS-ARC was designed by a multi-stakeholder, majority TGNB-identified Steering Committee to center patient voices, with a goal of facilitating future PCOR in GGAS.
The Steering Committee was involved in all aspects of the project, including proposal review and project development, creation and implementation of a stakeholder recruitment plan, development and dissemination of surveys to gather prioritized research themes and topics, and planning a multi-stakeholder engagement conference to develop prioritized comparative effectiveness research questions. The TRANS-ARC Stakeholder community was recruited with prioritization of specific groups within the TGNB community, including Black, Indigenous, Latinx individuals and those from other underrepresented racial and ethnic communities people with lived experience with sex work, incarceration, and disabilities, as well as veterans, youth advocates, and neurodiverse individuals, among other communities of focus. TRANS-ARC Stakeholders developed and disseminated the list of prioritized GGAS research questions to transgender health organizations, research funders, and their respective communities.
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TRANS-ARC: transgender/non-binary surgery - allied research collective patient-centered outcomes research institute 2021 Accessed from: https://www.pcori.org/research-results/2020/trans-arc-transgendernon-binary-surgery-allied-research-collective. Accessed January 7, 2021.
CHALLENGES AND OPPORTUNITIES
PCOR implementation has barriers of considerable resources and time.
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Specific community engagement processes will differ based on cultural, geographic, and health systems contexts, and thus each project will require significant effort to create context-appropriate processes. Co-learning, development of mutual trust and transparency, and management of conflicts between community members and researchers are all common aspects of the community engaged research process,Patient-centered Outcomes Research Institute. Workshop on Incorporating th ePatient Perspective into Patient-Centered Outcomes Reesearch, Hosted by the Patient Centeredness Work Group of the Patient Centered Outcomes Research Institute Methodology Committee. Executive Summary. March 6-7, 2012. Baltimore, MD. https://www.pcori.org/sites/default/files/Workshop-on-Incorporating-the-Patient-Perspective-into-PCOR1.pdf. Accessed July 2, 2021.
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yet may be unfamiliar and even difficult for those early in the PCOR process. However, the initiatives above demonstrate the feasibility and promise of deliberate stakeholder engagement. Recognizing the spectrum of community engagement that exists between traditional research and community-based participatory research, we encourage urologic researchers to consider engaging SGM stakeholders while pursuing all forms of high-quality research in SGM health.CONCLUSION
Overall, research on SGM populations in urology is increasing due to greater social acceptance, identification of severe health and healthcare disparities among SGM populations in other fields, and funding sources prioritizing these communities. As this field grows, it is important that this research is conducted in a meaningful and impactful way. Use of PCOR principles in research with SGM populations is important in reducing healthcare disparities, as it identifies the priorities that are important to the community and ensures that the research is completed in a culturally appropriate manner that does not perpetuate stigma and stereotypes at the core of these inequities.
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Article info
Publication history
Published online: November 11, 2021
Accepted:
August 11,
2021
Received:
April 11,
2021
Footnotes
Funding Information: This work was partially supported through a Patient- Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (#18835). All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.
Declaration of Competing Interest: None.
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Copyright
© 2021 Published by Elsevier Inc.
