Inclusion Of Diverse Populations Research Articles

BENEFÍCIOS DO PILATES NA DOR LOMAR.

Low back pain, also called as lumbago, often causes functional disability. It is estimated that 80 to 84% of the world´s population will, suffer an episode of low back pain at some point in their lives. It can be related to pathologies such as infection, tumor, arthritis, fracture, cauda equina syndrome, disc herniation, and lifestyle factors; smoking, diet, sedentary lifestyle, and occupation; heavy physical work, repetitive movements. Pilates is an important treatment option for people with low back pain. Created by Joseph Humbertus Pilates, Pilates is a physical exercise method that makes it possible to condition the body and mind, correct muscle imbalances, improve posture, and tone the body. The objective of this work is to evaluate the effectiveness of the Pilates method in people with low back pain. This is a literature review based on the database pedro.org.au, which offers a specialized approach to physiotherapy research. The included studies cover, individuals aged 18 and over, ensuring the sample is composed of adults; all genders were considered in the study selection, ensuring representativity and inclusion of diverse populations.

Race and Superfund site remediation

Abstract Superfund is a federal program established in 1980 to manage the cleanup of hazardous waste sites across the United States. Given the health and economic costs borne by people living near these sites, any demographic disparities within the Superfund program are issues of environmental justice. We investigate whether racial demographics local to a Superfund site are associated with its cleanup status, and if so, how. Our work addresses gaps in the literature by using detailed geospatial processing, comprehensive data, and a more complete set of racial/ethnic categorizations. We study 1,688 Superfund sites across the country. Under a wide variety of modeling scenarios, we consistently find that the proportion of the nearby population that is Asian is negatively associated with the probability of a Superfund site being cleaned up. This association has remained unidentified until now, possibly because earlier research on Superfund sites did not distinguish Asian populations as a separate group. Our result underscores the need for specific measurement and inclusion of diverse populations in environmental studies.

Illiteracy and cognitive sciences: A psycholinguistic perspective

This text emphasises the importance of considering literacy and nonverbal IQ (NVIQ) in cognitive psychology research, highlighting their significant impact on language acquisition and cognitive abilities. Inclusion of diverse populations is crucial to avoid overgeneralizations and gain a comprehensive understanding of these influences.

Decentralized Clinical Trials: Potentials for Equity in Digital Health.

The COVID-19 pandemic has rapidly increased the possibilities for conducting Decentralized Clinical Trials (DCT). This paper addresses the potential for conducting DCT in Denmark and discusses how this potential can improve equity in digital healthcare. From stakeholder interviews, we learned that DCT has the potential to be implemented, as DCT guidelines are in place in Denmark. DCT can potentially improve equal access and inclusion of diverse populations, home administration of medication, retention and compliance, and monitoring of patients and side effects. While DCT has potential in a Danish context, the challenges regarding DCT need to be considered carefully, particularly concerning equity in digital health.

Diversity and the Hierarchical Taxonomy of Psychopathology (HiTOP)

The Hierarchical Taxonomy of Psychopathology (HiTOP) is an empirically based, hierarchical model of the structure of psychopathology that was created in response to the limitations of traditional, categorical psychiatric classification frameworks. The HiTOP model has become increasingly popular in clinical psychology and psychiatry since its publication in 2017. In this Review, we consider the applicability of the HiTOP model to diverse, underrepresented and epistemically excluded populations. We first review the philosophy underlying psychopathology research in general to understand the impact of scientific norms on the inclusion of diverse populations within the research canon. We then review the HiTOP approach to modelling psychopathology, and how diverse populations have been included within HiTOP-related research to date. We conclude by highlighting ways for future research to increase the applicability of the HiTOP framework to diverse populations. Seriously engaging with the HiTOP model’s suitability for diverse, underrepresented and epistemically excluded populations is imperative in order to achieve the HiTOP consortium’s goal of delineating a fully empirical classification of psychopathology, and to provide a model that can guide the field of psychopathology research and training to increase representation. The Hierarchical Taxonomy of Psychopathology (HiTOP) is an empirically based, hierarchical model of the structure of psychopathology. In this Review, Rodriguez-Seijas et al. consider the applicability of the HiTOP model to diverse, underrepresented and epistemically excluded populations.

Opportunities and Challenges of an International Collaborative Pooled Analysis of Dietary Cohort Studies.

International collaborative work of prospective cohort studies has been conducted for a few decades. It has provided a rich source for researchers worldwide to investigate the role of dietary factors in the development of many diseases. A pooled analysis of the existing cohort studies has strengths, including increased statistical power, increased generalizability, the disclosure of unpublished work, use of the standardized approaches, a wide range of dietary exposures, inclusion of diverse populations, and a build-up of partnerships of investigators. The advantages of pooled analyses are significant in nutritional epidemiology. An increase in statistical power and analysis of multilevel exposures in the consortium data allow us to have better insight and knowledge of dietary factors related to chronic diseases. However, facilitating data harmonization of foods, food groups, and nutrients in the consortium data remains challenging. Combining and standardizing dietary data is complex, given differences in food frequency questionnaires, foods assessed, dietary exposure categories and intake levels, the validity of the dietary assessment, and nutrient database availability across individual studies. Although there are limitations in the pooled analysis, international collaborative pooled analysis is a valuable and efficient means to produce important scientific evidence. In addition, consortial research needs to continue to expand in the era of moving toward a diverse world and precision medicine.

FLEX, the 30,000 breast cancer transcriptome project: A platform for early breast cancer research using full-genome arrays paired with clinical data.

TPS612 Background: The ongoing, multi-center FLEX trial (NCT03053193) began in the United States in 2017, with the ultimate goal of 30,000 patients enrolled. The primary objective is to create a large-scale collaborative registry of early-stage breast cancer patients that links comprehensive clinical and full genome expression data to reveal new prognostic and/or predictive gene signatures. A key secondary objective of the trial is to enable investigator-initiated studies to explore early-stage breast cancer at a relatively low cost to the investigator. Methods: The prospective FLEX trial enrolls patients aged ≥ 18 years with histologically proven stage I-III breast cancer, with negative or 1-3 positive lymph nodes. Eligible patients have received MammaPrint, with or without BluePrint testing as standard of care, and consent to clinically annotated full transcriptome data collection. The FLEX base study protocol permits investigators to submit their own concept proposal, and upon review and approval by the Research and Scientific Review Committees, investigators interrogate clinical and genomic data from the FLEX database. The 10-year enrollment goal is a minimum of 30,000 patients. Since April 2017, 9,170 patients have been enrolled at over 109 sites in the United States. To date, 38 investigator-initiated substudies have been approved and are in progress, and 28 abstracts have been published in the US scientific congresses. To ensure inclusion of diverse populations, patients from local communities and 11 National Cancer Institute-designated Comprehensive Cancer Centers were included. Our diverse data set is helping meet the needs of historically under-represented patients with breast cancer. Of the self-reported ethnicities within the FLEX database, 65% are White or Caucasian, 8% Black or African American, 4% Latin American, and 2% Asian. There are 5 ongoing FLEX sub studies investigating racial disparities. The molecular profiling and differential gene expression analysis in early-stage breast cancer patients of African American, Asian, Hispanic ancestries helps to provide critical insights that correlate tumor biology with treatment outcomes. FLEX is expanding globally with sites anticipated in multiple European countries. The FLEX trial continues to expedite the discovery and development of novel genomic profiles, bringing precision oncology into the clinic to improve breast cancer management. Clinical trial information: NCT03053193.

Mutation spectrum and rates of variants of uncertain significance among African American males undergoing prostate cancer germline testing: Need for equity in genetic testing.

10502 Background: Germline testing (GT) for prostate cancer (PCA) is central to metastatic disease management, PCA screening strategies, and hereditary cancer assessment. African American (AA) males have a higher burden of PCA, yet have lower engagement in germline testing which limits understanding of genetic contribution to PCA. Here we evaluated the germline spectrum of AA and White males with PCA undergoing clinical multigene panel testing (MGPT) to inform germline testing strategies with attention to equity. Methods: Study participants included AA men and White men with PCA who underwent a 14-gene MGPT between April 2012 - December 2020 at a clinical diagnostic laboratory (Ambry Genetics). Exclusions were men with known pathogenic variants reported in their families or who had prior genetic testing. MGPT included: ATM, BRCA1, BRCA2, CHEK2, EPCAM, HOXB13, MLH1, MSH2, MSH6, NBN, PALB2, PMS2, RAD51D, TP53. Sanger or next generation sequencing analysis was performed per standard clinical testing protocol. Variant classification was per ACMG 5-tier system. Descriptive statistics summarized results with counts and percentages for categorical variables and mean and standard deviation for continuous variables. Data were compared with Fisher’s exact, Chi-squared, two proportion z-test, or two sample t-test, as appropriate. Significance level was set a priori at 0.05. Results: The dataset included genetic and clinical data from 427 males who had undergone MGPT: White males (n = 190; 45.5%) and AA males (n = 237; 55.5%). Mean age at diagnosis was 59 + 9.3 years. Among men whose Gleason score was indicated (72%), 47% had Gleason > = 8. Majority of men indicated having a 1st/2nd degree relative with PCA (68.97%) or 1st/2nd degree relative with any cancer (99.2%). In the entire cohort, 8.2% tested positive for a pathogenic/likely pathogenic variant; AA males (n = 14, 5.91%) and White males (n = 21, 11.05%). VUS only was reported in 21.31% of the overall cohort with a significant difference noted between AA and White males (25.32% vs. 16.32%, respectively; p = 0.0238). Mutation spectrum in AA males included: BRCA2 (n = 7), PALB2 (n = 3), ATM (n = 3), and BRCA1 (n = 1). Among White males, a wider spectrum of mutations was observed: BRCA2 (n = 6), ATM (n = 5), HOXB13 (n = 5), CHEK2 (n = 2), TP53 (n = 1), and NBN (n = 2). The proportion of AA males with multiple VUS was significantly higher than for Caucasian males (5.1% vs. 0.53%, p = 0.003). Conclusions: Clinical germline testing among AA males reveals a narrow spectrum of mutations in key DNA repair genes, with important implications for precision therapy and hereditary cancer assessment. Furthermore, AA males had significantly higher rates of multiple VUS, indicating critical need for greater inclusion of diverse populations in genetic studies to discern the pathogenic spectrum contributing to PCA aggressiveness and risk.

Abstract OT2-07-01: The FLEX real-world data platform explores new gene expression profiles and investigator-initiated protocols in early-stage breast cancer

Abstract Background: Genomic signatures provide prognostic information such as tumor metastatic potential, outperforming information gained from clinicopathologic factors alone, which has transformed personalized treatment of early breast cancer. Together, whole genome expression data can accurately stratify tumors into clinically actionable molecular subtypes. The FLEX study (NCT03053193) is a large, real-world dataset, combining whole genome expression with clinically annotated data, to accelerate research and discovery of subgroups in breast cancer. The goal of FLEX is to discover and develop novel genomic profiles that bring precision oncology to the clinic, and ultimately improve treatment and outcomes of patients with breast cancer. Study Design: The FLEX study is a multicenter, prospective observational trial of patients aged ≥ 18 years with stage I-III breast cancer who receive MammaPrint, with or without BluePrint. Patients consent to the acquisition of clinical data and clinically annotated full transcriptome tumor analysis. The FLEX study creates a unique infrastructure to develop and investigate hypotheses for targeted subset analyses and/or clinical trials. In doing so, the adaptive protocol allows submission of investigator-initiated sub-studies. Upon approval by a Scientific Review Committee, FLEX investigators can query the clinical and genomic data in FLEX to investigate hypotheses for targeted subset analysis. Patients enrolled in the original study who meet all eligibility criteria may be enrolled in sub-studies without additional consent. All necessary clinical data will be collected from patients, starting from diagnosis through 10-year follow-up. Sub-study research categories include: breast cancer and age, optimization of therapeutic strategies, breast cancer tumor types, biomarker identification and quality of care. The FLEX enrollment goal is a minimum of 30,000 patients within 10 years; since April 2017, more than 7,500 patients were enrolled at more than 90 sites. Participating sites include community hospitals and nine National Cancer Institute-designated comprehensive cancer centers to ensure inclusion of diverse populations, particularly patient populations that are underrepresented in traditional clinical trials. Most recently, the FLEX network was expanded globally with additional sites in Greece and Israel. To date, 38 investigator-initiated sub-studies have been approved, resulting in 23 published abstracts at national congresses. Trial contact information: NCT03053193, FLEX@agendia.com Citation Format: Cynthia X. Ma, Robert Maganini, Pat Whitworth, Jennifer A. Crozier, Joyce O'Shaughnessy, Sami Diab, Beth-Ann Lesnikoski, June Lee, Nina D'Abreo, Blanche H. Mavromatis, Pond Kelemen, Darina Pronin, Hiwot Abebe, Michelle L. Bolner, Christine Finn, Lisa Blumencranz, William Audeh, FLEX Investigators Group. The FLEX real-world data platform explores new gene expression profiles and investigator-initiated protocols in early-stage breast cancer [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr OT2-07-01.

Breast cancer risk factors in relation to molecular subtypes in breast cancer patients from Kenya

BackgroundFew studies have investigated risk factor heterogeneity by molecular subtypes in indigenous African populations where prevalence of traditional breast cancer (BC) risk factors, genetic background, and environmental exposures show marked differences compared to European ancestry populations.MethodsWe conducted a case-only analysis of 838 pathologically confirmed BC cases recruited from 5 groups of public, faith-based, and private institutions across Kenya between March 2012 to May 2015. Centralized pathology review and immunohistochemistry (IHC) for key markers (ER, PR, HER2, EGFR, CK5-6, and Ki67) was performed to define subtypes. Risk factor data was collected at time of diagnosis through a questionnaire. Multivariable polytomous logistic regression models were used to determine associations between BC risk factors and tumor molecular subtypes, adjusted for clinical characteristics and risk factors.ResultsThe median age at menarche and first pregnancy were 14 and 21 years, median number of children was 3, and breastfeeding duration was 62 months per child. Distribution of molecular subtypes for luminal A, luminal B, HER2-enriched, and triple negative (TN) breast cancers was 34.8%, 35.8%, 10.7%, and 18.6%, respectively. After adjusting for covariates, compared to patients with ER-positive tumors, ER-negative patients were more likely to have higher parity (OR = 2.03, 95% CI = (1.11, 3.72), p = 0.021, comparing ≥ 5 to ≤ 2 children). Compared to patients with luminal A tumors, luminal B patients were more likely to have lower parity (OR = 0.45, 95% CI = 0.23, 0.87, p = 0.018, comparing ≥ 5 to ≤ 2 children); HER2-enriched patients were less likely to be obese (OR = 0.36, 95% CI = 0.16, 0.81, p = 0.013) or older age at menopause (OR = 0.38, 95% CI = 0.15, 0.997, p = 0.049). Body mass index (BMI), either overall or by menopausal status, did not vary significantly by ER status. Overall, cumulative or average breastfeeding duration did not vary significantly across subtypes.ConclusionsIn Kenya, we found associations between parity-related risk factors and ER status consistent with observations in European ancestry populations, but differing associations with BMI and breastfeeding. Inclusion of diverse populations in cancer etiology studies is needed to develop population and subtype-specific risk prediction/prevention strategies.

Adopting a "Compound" Exposome Approach in Environmental Aging Biomarker Research: A Call to Action for Advancing Racial Health Equity.

Background:In June 2020, the National Academies of Sciences, Engineering, and Medicine hosted a virtual workshop focused on integrating the science of aging and environmental health research. The concurrent COVID-19 pandemic and national attention on racism exposed shortcomings in the environmental research field’s conceptualization and methodological use of race, which have subsequently hindered the ability of research to address racial health disparities. By the workshop’s conclusion, the authors deduced that the utility of environmental aging biomarkers—aging biomarkers shown to be specifically influenced by environmental exposures—would be greatly diminished if these biomarkers are developed absent of considerations of broader societal factors—like structural racism—that impinge on racial health equity.Objectives:The authors reached a post-workshop consensus recommendation: To advance racial health equity, a “compound” exposome approach should be widely adopted in environmental aging biomarker research. We present this recommendation here.Discussion:The authors believe that without explicit considerations of racial health equity, people in most need of the benefits afforded by a better understanding of the relationships between exposures and aging will be the least likely to receive them because biomarkers may not encompass cumulative impacts from their unique social and environmental stressors. Employing an exposome approach that allows for more comprehensive exposure–disease pathway characterization across broad domains, including the social exposome and neighborhood factors, is the first step. Exposome-centered study designs must then be supported with efforts aimed at increasing the recruitment and retention of racially diverse study populations and researchers and further “compounded” with strategies directed at improving the use and interpretation of race throughout the publication and dissemination process. This compound exposome approach maximizes the ability of our science to identify environmental aging biomarkers that explicate racial disparities in health and best positions the environmental research community to contribute to the elimination of racial health disparities. https://doi.org/10.1289/EHP8392

Experiences of Palliative and End-of-Life Care among Older LGBTQ Women: A Review of Current Literature.

Background: Understanding end-of-life (EOL) and palliative care continues to grow. However, little attention has been paid to the experiences, preferences, and needs of older lesbian, gay, bisexual, transgender, and queer (LGBTQ) women. While some universal expectations or preferences at EOL exist, this population may not receive adequate or appropriate attention or reporting of unique EOL issues and experiences. Objective: Systematically search for and narratively review existing evidence concerning the expectations, preferences, and needs for palliative and EOL care of LGBTQ older women. Design: A comprehensive literature review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Articles reporting needs, experiences, and perspectives of palliative care and EOL care among LGBTQ older women were evaluated. Measurements: Articles published between 1996 and 2019 were retrieved from PsycINFO, MEDLINE, Cochrane Library, Academic Search Complete, AgeLine, CINHAL, PubMed, LGBT Life, SocINDEX, Women's Studies International, Joanna Briggs Institute, and Open Grey. Results: A total of 16 articles were included. Articles described several concerns for the overall LGBTQ population; however, additional issues and experiences specific to older LGBTQ women were also identified, including vulnerability associated with isolation and poverty, women's social needs and support networks, and preferences for complementary care. Conclusion: There remains a need for further research with older LGBTQ women concerning palliative and EOL care, particularly around preparation for EOL and preferences for support. Inclusion of diverse populations in terms of sexual and gender identification are needed to fully understand how to provide appropriate and preferred support.

Including \u2018seldom heard\u2019 views in research: opportunities, challenges and recommendations from focus groups with British South Asian people with type 2 diabetes

BackgroundThe inclusion of ‘seldom heard’ groups in health and social care research is increasingly seen as important on scientific, policy and ethical grounds. British South Asians, the largest minority ethnic group in the United Kingdom (UK), are under-represented in health research yet over-represented in the incidence of certain conditions such as type 2 diabetes. With the growing requirement of patient involvement in research and the inclusion of diverse populations, methodological guidance on how to include, engage and conduct research with UK South Asian populations is essential if services and interventions are to be relevant and impactful. However, such guidance for researchers is limited.MethodsThe aim of the paper is to reflect on our experiences of conducting focus groups with UK South Asian communities with type 2 diabetes, which involved experienced community partners and researchers working closely together. We discuss the factors that aided the successful delivery of the project, the challenges that we encountered, how we dealt with these, and recommendations.ResultsOur study suggests ways to involve and conduct focus groups with UK South Asian populations. Key considerations are categorised under four headings: co-working with community partners; linguistic competency; cultural competency and awareness; and reflexivity, power and acknowledgement. Having an experienced team of researchers and community experts – with the relevant linguistic and cultural competencies and different kinds of knowledge and skills – was key to the successful delivery of the study. Working collaboratively enabled us to recruit a diverse sample, to navigate the challenges of recruitment, to be present at every discussion which helped contribute to data richness, and to reflect on our own roles in the research process.ConclusionsFocus groups with UK South Asian communities can be a useful way of exploring new topics and involving seldom heard views. While a useful method, focus groups are only one way of exploring a research topic and provide an insight into context-specific attitudes and views. Future research should explore British South Asian participants’ views on how they would like to be involved in research, including new methods of collecting data and coproducing research.

Abstract LB-012: US cancer centers of excellence coordination of operational strategies contribute to enhanced accrual of racial and ethnic minorities in clinical trials

Abstract Background: Racial and ethnic minority groups (REMGs) have low rates of inclusion in cancer trials. With the rise of precision medicine, it is critical that study populations in clinical research reflect the changing US demographics. Methods: Criteria were developed to identify cancer centers able to accrue a higher than average proportion of REMGs into clinical trials. Comprehensive interviews were conducted with leaders of identified cancer centers to ascertain operational strategies contributing to enhanced accrual of REMGs. Results: Eight representative centers reported a REMG accrual rate range in cancer research between 10-50% in a 12-month reporting period and met other criteria for inclusion, and 14 leaders participated in this assessment. Key findings were that centers: had a metric collection and reporting approach; routinely captured race and ethnicity data within databases accessible to research staff; had operational standards to support access and inclusion; developed practices to facilitate sustained patient participation during clinical trials; had strategies to decrease recruitment time and optimize clinical study design; and identified low-resource strategies for improving accrual. There was also a commitment to establish processes that support the patient’s provider as the key influencer of patient recruitment into clinical trials. Conclusion: Conduct of cancer research requires coordination of an operational framework governed by metrics in order to achieve high accrual of diverse populations in clinical trials. Leading US cancer centers have established key Operational Excellence practices and other notable practices which are critical for optimizing sustained inclusion of diverse populations in cancer clinical research. Citation Format: Jeanne M. Regnante, Nicole A. Richie, Lola Fashoyin-Aje, Laura Lee Hall, Quita Highsmith, J'Aimee A. Louis, Kenneth Turner, Spencer C. Hoover, Simon Craddock Lee, Erin L. Williams, Homer Adams, Coleman Obasaju, Ify Sargeant, Madeline Geday, Marianne Gandee, Rayneisha Watson, Moon S. Chen. US cancer centers of excellence coordination of operational strategies contribute to enhanced accrual of racial and ethnic minorities in clinical trials [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2019; 2019 Mar 29-Apr 3; Atlanta, GA. Philadelphia (PA): AACR; Cancer Res 2019;79(13 Suppl):Abstract nr LB-012.

Update on Inherited Retinal Disease in South Africa: Encouraging Diversity in Molecular Genetics.

There is a glaring disparity in the populations included in genetic research; the majority of work involves European-derived cohorts, while other global populations- including Africans- are underrepresented. This is also true for the study of inherited retinal diseases. Being the most ancient of extant populations, African samples carry more variation than others, making them valuable for novel gene and variant discovery. The inclusion of diverse populations in research is essential to gain a more comprehensive understanding of genetic variation and molecular mechanisms of disease.

Polygenic risk scores: a biased prediction?

A new study highlights the biases and inaccuracies of polygenic risk scores (PRS) when predicting disease risk in individuals from populations other than those used in their derivation. The design bias of workhorse tools used for research, particularly genotyping arrays, contributes to these distortions. To avoid further inequities in health outcomes, the inclusion of diverse populations in research, unbiased genotyping, and methods of bias reduction in PRS are critical.

Blame\u2014a novel by Tony Holtzman

After writing many scientific articles at the interface of genetics and society, Neil A (Tony) Holtzman published a novel in Autumn 2016: Blame. This book review summarizes several of the story lines, some of which are related to the Inclusion of Diverse Populations in Genomics Research and Health Services, the topic of a special issue of the Journal of Community Genetics.

Inclusion of diverse populations in genomic research and health services: Genomix workshop report

Clinical genetic services and genomic research are rapidly developing but, historically, those with the greatest need are the least to benefit from these advances. This encompasses low-income communities, including those from ethnic minority and indigenous backgrounds. The "Genomix" workshop at the European Society of Human Genetics (ESHG) 2016 conference offered the opportunity to consider possible solutions for these disparities from the experiences of researchers and genetic healthcare practitioners working with underserved communities in the USA, UK and Australia. Evident from the workshop and corresponding literature is that a multi-faceted approach to engaging communities is essential. This needs to be complemented by redesigning healthcare systems that improves access and raises awareness of the needs of these communities. At a more strategic level, institutions involved in funding research, commissioning and redesigning genetic health services also need to be adequately represented by underserved populations with intrinsic mechanisms to disseminate good practice and monitor participation. Further, as genomic medicine is mainstreamed, educational programmes developed for clinicians should incorporate approaches to alleviate disparities in accessing genetic services and improving study participation.

Incorporating Immigrant Perspectives Into Organizational Research and Practice: Implementing Inclusive Discussions

Anthropologists have "been in business" with for-profit and not-for-profit organizations (NPOs) for most of the 20th century, and their role as consultants for such corporations, research firms, and local organizations has continued to grow since this time (Jordan 2013). When they invest in community-based research through these partnerships, NPOs often hope to acquire meaningful and relevant evidence about practices in their communities. Yet, NPOs are unable to realize many of their potential collaborations with academics due to their dependency on elaborate and increasingly competitive funding frameworks constructed by granting bodies (INTRAC 2012). Furthermore, Morris and Luque (2011) have argued that community-based organizations and coalitions have limited input from the populations they hope to represent. Consequently, the representation and inclusion of diverse populations throughout the research process continues to be a struggle. This includes participation in data collection, project development, creation of evaluation measures, and the negotiation of program and/or policy development. Despite these limitations, participatory-action research is shown to provide long-term partnerships between both academics and their collaborators (INTRAC 2012).

Recruitment and Retention of Ethnically Diverse Long-Term Family Caregivers for Research

The inclusion of ethnically diverse long-term care family caregivers is significant in research, particularly in social work research because of the importance placed on diverse populations. However, the inclusion of diverse populations poses a set of unique recruitment and retention challenges for researchers. This process can be particularly complicated when multiple long-term care recruitment partners are utilized and when the project involves a multi-phase data collection plan with different minority recruitment needs for each phase. In our work we learned that: (a) research teams should plan for gender and ethnic differences in the ways that family caregivers think about and approach research involvement, (b) socioeconomic disadvantages and ethnic differences have both independent and interactive effects on research participation, (c) physical and emotional ’costs,’ as well as financial costs, of caregiver participation should be given more attention in informed consent procedures, and (d) agency collaboration for minority recruitment and retention requires continuous nurturing and sustained effort by all members of the research team.