Patient-Centered Practices for Engaging Transgender and Gender Diverse Patients in Clinical Research Studies

Abstract Background: The purpose of this formative study was to assess barriers and facilitators to participation of transgender and gender diverse (TGD) patients in clinical research to solicit specific feedback on perceived acceptability and feasibility of research methods to inform creation of a multisite longitudinal cohort of primary care patients engaged in care at two community health centers.Method: Between September-November 2018, four focus groups (FGs) were convened at two community health centers in Boston, MA and New York, NY (N=28 participants across all 4 groups; 11 in Boston and 17 in New York). FG guides asked about patient outreach, acceptability of study methods and measures, and ideas for study retention. FGs were facilitated by TGD study staff, lasted approximately 90 min in duration, were audio recorded, and then transcribed verbatim by a professional transcription service. Thematic analyses were conducted by two independent analysts applying a constant comparison method. Consistency and consensus were achieved across code creation and application aided by Dedoose software.Results: Participants were a mean age of 33.9 years (SD 12.3; Range 18-66). Participants varied in gender identity with 4 (14.3%) male, 3 (10.7%) female, 8 (28.6%) transgender male, 10 (35.7%) transgender female, and 3 (10.7%) nonbinary. Eight (26.6%) were Latinx, 5 (17.9%) Black, 3 (10.7%) Asian, 3 (10.7%) another race, and 5 (17.9%) multiracial. Motivators and facilitators to participation were: research creating community, research led by TGD staff, compensation, research integrated into healthcare, research applicable to TGD and non-TGD people, and research helping TGD communities. Barriers were: being research/healthcare averse, not identifying as TGD, overlooking questioning individuals, research coming from a ‘cisgender lens”, distrust of how the research will be used, research not being accessible to TGD people, and research being exploitative.Conclusion: Though similarities emerged between the perspectives of TGD people and research citing perspectives of other underserved populations, there are barriers and facilitators to research which are unique to TGD populations. It is important for TGD people to be involved as collaborators in all aspects of research that concerns them.

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Patient-Centered Practices for Engaging Transgender and Gender Diverse Patients in Clinical Research Studies

10.21203/rs.3.rs-56021/v1 ◽

2020 ◽

Author(s):

Andrew Asquith ◽

Lauren Sava ◽

Alexander B. Harris ◽

Asa E. Radix ◽

Dana J. Pardee ◽

...

Keyword(s):

New York ◽

Clinical Research ◽

Community Health ◽

Community Health Centers ◽

Underserved Populations ◽

Health Centers ◽

Barriers And Facilitators ◽

Community Research ◽

Gender Diverse ◽

And Gender

Abstract Background: The purpose of this formative study was to assess barriers and facilitators to participation of transgender and gender diverse (TGD) patients in clinical research to solicit specific feedback on perceived acceptability and feasibility of research methods to inform creation of a multisite longitudinal cohort of primary care patients engaged in care at two community health centers.Method: Between September-November 2018, four focus groups (FGs) were convened at two community health centers in Boston, MA and New York, NY (N=28 participants across all 4 groups; 11 in Boston and 17 in New York). FG guides asked about patient outreach, acceptability of study methods and measures, and ideas for study retention. FGs were facilitated by TGD study staff, lasted approximately 90 min in duration, were audio recorded, and then transcribed verbatim by a professional transcription service. Thematic analyses were conducted by two independent analysts applying a constant comparison method. Consistency and consensus were achieved across code creation and application aided by Dedoose software.Results: Participants were a mean age of 33.9 years (SD 12.3; Range 18-66). Participants varied in gender identity with 4 (14.3%) being male, 3 (10.7%) female, 8 (28.6%) transgender male, 10 (35.7%) transgender female, and 3 (10.7%) nonbinary. Eight (26.6%) were Latinx, 5 (17.9%) Black, 3 (10.7%) Asian, 3 (10.7%) another race, and 5 (17.9%) multiracial. Motivators and facilitators to participation were: research creating community, research led by TGD staff, compensation, research integrated into healthcare, research applicable to TGD and non-TGD people, and research helping TGD communities. Barriers were: being research/healthcare averse, not identifying as TGD, overlooking questioning individuals, research coming from a ‘cisgender lens”, distrust of how the research will be used, research not being accessible to TGD people, and research being exploitative.Conclusion: Though similarities emerged between the perspectives of TGD people and research citing perspectives of other underserved populations, there are barriers and facilitators to research which are unique to TGD populations. It is important for TGD people to be involved as collaborators in all aspects of research that concerns them.

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Patient-centered practices for engaging transgender and gender diverse patients in clinical research studies

BMC Medical Research Methodology ◽

10.1186/s12874-021-01328-4 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Andrew Asquith ◽

Lauren Sava ◽

Alexander B. Harris ◽

Asa E. Radix ◽

Dana J. Pardee ◽

...

Keyword(s):

New York ◽

Clinical Research ◽

Community Health ◽

Community Health Centers ◽

Underserved Populations ◽

Health Centers ◽

Barriers And Facilitators ◽

Community Research ◽

Gender Diverse ◽

And Gender

Abstract Background The purpose of this formative study was to assess barriers and facilitators to participation of transgender and gender diverse (TGD) patients in clinical research to solicit specific feedback on perceived acceptability and feasibility of research methods to inform creation of a multisite longitudinal cohort of primary care patients engaged in care at two community health centers. Method Between September–November 2018, four focus groups (FGs) were convened at two community health centers in Boston, MA and New York, NY (N = 28 participants across all 4 groups; 11 in Boston and 17 in New York). FG guides asked about patient outreach, acceptability of study methods and measures, and ideas for study retention. FGs were facilitated by TGD study staff, lasted approximately 90 min in duration, were audio recorded, and then transcribed verbatim by a professional transcription service. Thematic analyses were conducted by two independent analysts applying a constant comparison method. Consistency and consensus were achieved across code creation and application aided by Dedoose software. Results Participants were a mean age of 33.9 years (SD 12.3; Range 18–66). Participants varied in gender identity with 4 (14.3%) men, 3 (10.7%) women, 8 (28.6%) transgender men, 10 (35.7%) transgender women, and 3 (10.7%) nonbinary. Eight (26.6%) were Latinx, 5 (17.9%) Black, 3 (10.7%) Asian, 3 (10.7%) another race, and 5 (17.9%) multiracial. Motivators and facilitators to participation were: research creating community, research led by TGD staff, compensation, research integrated into healthcare, research applicable to TGD and non-TGD people, and research helping TGD communities. Barriers were: being research/healthcare averse, not identifying as TGD, overlooking questioning individuals, research coming from a ‘cisgender lens”, distrust of how the research will be used, research not being accessible to TGD people, and research being exploitative. Conclusion Though similarities emerged between the perspectives of TGD people and research citing perspectives of other underserved populations, there are barriers and facilitators to research which are unique to TGD populations. It is important for TGD people to be involved as collaborators in all aspects of research that concerns them.

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Community Health Centers and Access to Care Among Underserved Populations: A Synthesis Review

Medical Care Research and Review ◽

10.1177/1077558719848283 ◽

2019 ◽

Vol 77 (1) ◽

pp. 3-18 ◽

Cited By ~ 2

Author(s):

Brendan Saloner ◽

Adam S. Wilk ◽

Jonathan Levin

Keyword(s):

Access To Care ◽

Community Health ◽

Low Income ◽

Community Health Centers ◽

Underserved Populations ◽

Health Centers ◽

Access Cost ◽

Medicaid Eligibility ◽

Quasi Experimental ◽

Medicaid Expansions

Community health centers (CHCs) deliver affordable health services to underserved populations, especially uninsured and Medicaid enrollees. Since the early 2000s, CHCs have grown because of federal investments in CHC capacity and expansions of Medicaid eligibility. We review 24 relevant studies from 2000 to 2017 to evaluate the relationship between CHCs, policies that invest in services for low-income individuals, and access to care. Most included studies use quasi-experimental designs. Greater spending on CHCs improves access to care, especially for low-income and minority individuals. Medicaid expansions also increase CHC use. Some studies indicate that CHC investments complement Medicaid expansions to increase access cost-effectively. Further research should explore patient preferences and patterns of CHC utilization versus other sites of care and population subgroups for which expanding CHC capacity improves access to care most. Researchers should endeavor to use measures and sample definitions that facilitate comparisons with other estimates in the literature.

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467. COVID-19 Infection in Persons Living with HIV in a Network of Community Health Centers in New York

Open Forum Infectious Diseases ◽

10.1093/ofid/ofab466.666 ◽

2021 ◽

Vol 8 (Supplement_1) ◽

pp. S335-S336

Author(s):

Aisha S Khan ◽

Christine A Kerr ◽

Jenny Doyle ◽

Sonia Punj ◽

Julie Coleman ◽

...

Keyword(s):

New York ◽

Community Health ◽

Community Health Centers ◽

New York State ◽

Antibody Test ◽

Health Centers ◽

River Health ◽

York State ◽

Persons Living With Hiv ◽

Living With Hiv

Abstract Background COVID-19 infection amongst persons living with HIV (PLWH) at Federally Qualified Healthcare Centers (FQHC) is not yet well understood. FQHC patients are frequently impoverished and marginalized due to socioeconomic instability and structural inequities. The virus has a wide-ranging clinical presentation, and little is known about how it affects specific populations such as PLWH and whether specific patterns of immunocompromise confer increased risk. Patients in community health centers and those living with HIV are often underrepresented from clinical trials. Patients seen at FQHC’s are more likely to be uninsured or living in poverty, or of Black or Latinx racial and ethnic backgrounds. Sun River Health is a not-for-profit, New York State licensed Article 28 Diagnostic & Treatment Center and FQHC. Sun River Health provides HIV primary care and supportive services caring for more than 2,500 PLWH primarily concentrated in 16 sites throughout the region. This study is a retrospective analysis of a vulnerable community at the heart of this pandemic. Methods We gathered COVID-19 diagnosis related data from the clinic’s electronic medical record and the New York State Health Information Exchange (HIE). We did chart reviews on 122 PLWH who had positive COVID PCR or antibody test between March 10 2020 and June 10 2020. Data collected included presence of symptoms, presence of comorbidities, CD4 counts, Hospitalization rate, ICU admission, and number of deaths. Results 71.3% of cases occurred between the ages of 40-69 years. There were 85 cases (69.7%) in men and 37 cases (30.3%) in women. 54 cases (44.3%) occurred in African Americans, and 46 cases (37.7%) in Caucasians. 48 cases (39.3%) occurred in Latinx individuals, and 68 cases (55.7%) in Non-Hispanics. 91 cases (74.6%) were symptomatic and had either a positive COVID-19 PCR or antibody test. Symptomatic COVID-19 was present at higher rates in those with multiple predisposing comorbidities. 101 cases (82.8%) were virally suppressed. 89 cases (72.9%) were not hospitalized while 27 cases (22.1%) were hospitalized. Conclusion Most PLWH with COVID-19 were managed on an outpatient basis. PLWH with COVID-19 are not at a greater risk of severe disease or death as compared to HIV negative patients. Disclosures Christine A. Kerr, MD, Galileo Health (Employee, Shareholder)

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Health Care Delivery Interventions for Hypertension Management in Underserved Populations in the United States: A Systematic Review

Hypertension ◽

10.1161/hypertensionaha.120.15946 ◽

2021 ◽

Author(s):

Maarya Pasha ◽

LaPrincess C. Brewer ◽

Susie Sennhauser ◽

Mouaz Alsawas ◽

M. Hassan Murad

Keyword(s):

United States ◽

Systematic Review ◽

Community Health ◽

Community Health Centers ◽

Underserved Populations ◽

Care Delivery ◽

The United States ◽

Health Centers ◽

Improvement Interventions ◽

Quality Improvement Interventions

The high prevalence of uncontrolled hypertension in underserved populations is a major cause of health disparities in the United States and requires innovative health care delivery interventions. We conducted a systematic review of randomized controlled trials and comparative observational studies examining the effectiveness of contemporary systems change and quality improvement interventions aimed at improving blood pressure (BP) control published from 2010 to 2020. We included studies evaluating multicomponent practice improvement interventions conducted in the United States in community health centers. We identified 26 studies including 48 187 patients with hypertension with a high proportion of racial/ethnic minorities, low socioeconomic status, and a high burden of chronic illness. Multicomponent interventions led to an average reduction of 5 to 10 mm Hg in systolic BP. Four studies demonstrated the effectiveness of integrating pharmacists into community health centers for BP management and reduced cardiovascular disparities for at-risk populations. Five studies demonstrated the effectiveness of integrating community health workers into care workflows leading to reduction in BP and high patient satisfaction. Five studies used the electronic medical record as a tool for population management and showed only modest reduction in BP. One study demonstrated the effectiveness of incentivizing clinics with higher payments for uninsured and Medicaid patients meeting performance criteria. Very few studies evaluated treatment complications or medications side effects. Multicomponent quality improvement interventions instituted in community health centers are effective in lowering BP. Several components of the interventions were identified as being associated with higher efficacy.

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