Inclusive Research Practices Research Articles

Uncharted Territory: Delving into Unexplored Knowledge to Curb Ableism in Academia

ABSTRACTIntroductionLanguage can reflect bias: an ‘intellectual’ disability means for many people that you cannot be an academic knowledge producer; a ‘learning’ disability means that your education will be hampered. Like language definitions, academic practices can reflect societal biases. The social (in)justice regarding knowledge and knowledge production is called epistemic injustice, and it has resulted in exclusion of nonconventional knowers, such as persons with intellectual or learning disabilities, from academia and higher education (other than as objects of research).MethodsThis paper will discuss academic practices through the lens of epistemic (in)justice and look at the potential of inclusive research and educational practices therein. We will briefly describe dominant ways of knowing (e.g., abstract, verbal), and counter these practices in exploring practical, tacit, embodied and affective ways of knowing.FindingsFor people with intellectual disabilities to be able to gain recognition as ‘real’ knowers within academia, we need to include diverse types of knowing and enable academic practices to be inclusive of people with intellectual disabilities. Inclusive practices can support a paradigm shift away from dominant ways of knowledge production in research and education, by centralising and correctly interpreting alternate knowledge. Experiences of scholars with intellectual disabilities appear to confirm the value of different ways of knowing.ConclusionsDrawing from these experiences, we will discuss the importance of relational autonomy, collectively owned and adaptive knowledge, and the learning context.

Partnership between a consumer-led mental health research network and a large mental health research organisation: an Australian mixed methods case study

AimThis paper presents a case study review of an Australian research partnership between an independent mental health lived experience-led research network and an academic organisation established for the research and treatment of disorders of the brain and mind. The aim of the study was to explore the principles and practical requirements needed for a successful partnership that promotes inclusive research practices and power sharing and provide a framework to improve the operationalization of future similar partnerships.MethodsThis study was led and conducted by lived experience researchers. We used a mixed-method approach to data collection for data triangulation. An environmental scan of peer-reviewed and grey literature on mental health research partnerships was conducted, followed by a three-part data collection with members of both organisations. Data collection comprised an online survey, in-depth interviews, and a roundtable discussion to integrate findings and formulate recommendations.Results and ConclusionThis case study explores and describes a missed opportunity of a consumer led mental health research organisation to work successfully with an established mental health research organisation. Poor communication and unclear processes led to unmet expectations on both sides. Findings suggest the use of reflective practice by team members of both partner organisations may have been helpful in identifying further improvements to inclusive research practice, empowering consumers in inclusive mental health research.

Periodontal diseases in Africa.

Periodontal diseases, a group of complex conditions marked by an excessive immune response and periodontal tissue destruction, are a global health concern. Since 1990, the incidence of these diseases has doubled, with Western sub-Saharan Africa experiencing the highest burden. Accurate diagnosis and case identification are crucial for understanding the etiology, features of disease, research, treatment and prevention. Modern perspectives on periodontal disease classification are based on commonality among those affected. However, current literature is often plagued by methodological inconsistencies and focused on disease mechanisms in European populations. Health inequalities in low- and middle-income countries (LMICs) are exacerbated by these challenges, with sub-Saharan Africa, and Nigeria specifically, facing unique difficulties such as clinical personnel shortages and limited research infrastructure. This review explored disparities in periodontal disease research, care and outcomes in African populations. We highlighted these disparities and identified the factors contributing to inequities in periodontal health outcomes. We further demonstrated the critical need for inclusive and equitable healthcare and research practices tailored to the unique challenges faced by diverse populations and regions with limited resources. Addressing these disparities is essential for ensuring that advancements in healthcare are accessible to all, thereby improving global oral health and general health.

Dialogue between researchers and older immigrant women in Norway post COVID-19: A qualitative study

Abstract Background In the wake of the COVID-19 pandemic, marginalized groups, particularly older immigrant women, have faced new challenges, prompting an urgent need for research to understand their post-pandemic needs and foster inclusive healthcare systems. In view of this, older immigrant women and researchers developed a project based on dialogue, holding monthly meetings for a year, with the aim of improving health literacy for the women, and enlightening the researchers on the women’s challenges. This study has sought to understand the experiences of the dialogue between older immigrant women and researchers. Methods We utilized participant observation in five dialogical meetings between older immigrant women and researchers, followed by semi-structured interviews with 8 older immigrant women and 7 researchers in Bergen. Data was analyzed using thematic analysis, supported by audio-recorded and transcribed interviews, alongside notes from participant observations. Results Analysis yielded three main themes of health knowledge, collaboration, and power dynamics. The dialogue was seen as a positive experience by both older immigrant women and researchers, with a view to establishing collaboration and trust. It also encouraged user participation in research, for the women, and carrying out research that was relevant to this otherwise ‘invisible’ population to the health system, for researchers, whilst empowering the women with knowledge to improve and maintain their own health. Conclusions This study sheds light on the crucial role of dialogue between older immigrant women and researchers in understanding post-COVID-19 needs. The findings underscore the importance of fostering collaboration, trust, and user participation in research, empowering marginalized populations while addressing gaps in the healthcare system. By amplifying the older immigrant women voices’ and promoting inclusive research practices, we can foster responsive and equitable healthcare systems. Key messages • Dialogue between older immigrant women and researchers is essential for understanding post-COVID-19 needs, fostering collaboration and trust. • User participation empowers marginalized groups, while relevant research improves healthcare inclusivity and outcomes for all.

Assessing Africa’s position in the development of AI-enabled ECG devices

Background The integration of Artificial Intelligence (AI) in electrocardiographic (ECG) devices has become a pivotal area of research, particularly during the COVID-19 pandemic. These technologies are essential for enhancing cardiac diagnosis and monitoring. Methods This study assesses current trends, key contributors, and collaborative networks in the field of AI-enhanced ECG devices. We utilized a comprehensive analysis, using the Biblioshiny library from Bibliometrix for data exploration of data extracted from the Scopus database and VOSViewer for creating and visualizing maps. These tools were played an important role in conducting an in-depth analysis of the relationships and developments within the field. Results The analysis shows a significant increase in publications related to AI-enhanced ECG devices, with a marked surge during the COVID-19 pandemic. Despite the growing interest and technological advancements, the study exposes a notable disparity in the geographical distribution of research contributions, highlighting substantial under-representation of African researchers. This gap is attributed to infrastructural, financial constraints, and limited collaborative networks within the continent. Conclusion The rapid evolution and increasing importance of AI in ECG devices underscore the need for more inclusive research practices. There is a critical need to integrate and promote contributions from under-represented regions, particularly Africa, to ensure a globally diverse perspective in tackling health challenges. This study calls for enhanced participation and support for African researchers to bridge the existing research gap and foster global health equity.

Abstract A080: Improving outcomes: Addressing racial and ethnic disparities in colorectal cancer genomic research

Abstract Colorectal cancer (CRC) is the fourth most common cancer diagnosed in the United States (U.S.). This disease presents notable health disparities among racial and ethnic minorities in the U.S. Native Americans (NA) and non-Hispanic Blacks (NHB) exhibit the highest incidence and mortality rates for CRC compared to non-Hispanic Whites (NHW). These disparities are driven by a combination of factors, including socioeconomic inequalities, access to healthcare, lifestyle habits, and genetic susceptibilities. Minority populations often face delays in diagnosis and treatment, leading to advanced disease stages at presentation and poorer outcomes. Addressing these disparities through cancer genomics is essential for developing effective, personalized treatments that can improve outcomes for underrepresented populations. Comprehensive genomic studies can reveal genetic mutations and biomarkers unique to these groups, facilitating targeted therapies and preventive measures tailored to their specific needs. To address these disparities, we conducted an analysis of U.S. population-based colorectal cancer studies within 3 cancer genomic databases: the National Cancer Institute’s Genomic Data Commons, the AACR Project GENIE, and cBioPortal. We identified 13 studies suitable for inclusion, calculating incidence percentages across all racial and ethnic categories. Our analysis encompassed a total of 20,295 patients. Among the analyzed patients, the racial distribution was as follows: NHW (68.5%), Asians (5.30%), NHB (7.7%), Other (5.6%), NA (0.2%), Pacific Islander/Native Hawaiian (0.07%), and not reported (12.7%). Ethnic data was missing for 24.1% (n=4,895) of the patients. Samples were predominantly from individuals identified as Not Hispanic (68.4%), while Hispanic individuals constituted 7.5%. Our results show significant underrepresentation of NHB, NA and Hispanic patients in CRC genomic databases highlighting a disparity between expected and actual representation. These findings underscore the critical need for inclusive research practices. Addressing these disparities in cancer genomics is imperative to develop equitable, effective treatments and improve health outcomes for all populations. Ensuring diverse representation in genomic databases will enhance the understanding of genetic differences across populations, inform targeted therapies, and ultimately contribute to reducing CRC disparities. By addressing these disparities, we can move towards a future where all populations benefit equally from advancements in CRC treatment and prevention, thus improving survival rates and quality of life for minority groups. Citation Format: Gabriela Arroyo Figueroa, Tim F. Greten, Cecilia Monge. Improving outcomes: Addressing racial and ethnic disparities in colorectal cancer genomic research [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr A080.

Conducting research within the acronym: Problematizing LGBTIQ+ research in psychology

ABSTRACTLGBTIQ+ research acknowledges shared experiences of groups marginalized due to gender identities, sexualities, and sex characteristics. This universalist coalition approach has resulted in much affirmational research and progressive policy development. However, it risks homogenizing the unique experiences and needs of specific groups; a risk lessened by a particularist subgroup approach. In this theoretical paper, we reflect on the challenges of a coalition or subgroup approach by considering interdependencies and boundaries between sex, gender, and sexuality‐based identities. Through tracing the historical development of LGBTIQ+ research and activism and using examples from intersex studies, intersectionality, and political actions, we explore tensions between the collective identities that make up the LGBTIQ+ acronym. We further offer suggestions for reimagining LGBTIQ+ research, advocating for community‐driven approaches that respect the situated knowledge of LGBTIQ+ individuals, and use adaptable and inclusive research practices that bridge academia and activism that aim to improve the lives of the marginalized.

Language education for migrant/refugee inmates inside two prisons in Greece: a nexus analysis research

ABSTRACT The article discusses the challenges and methodological choices undertaken within a research project on language education in two prison schools in Greece with migrant multilingual student inmates, aged 18–22 years old. The 2.5 years of research adopted Nexus Analysis as a methodology and an interpretive framework. Throughout prolonged engagement of the research with the field, data were generated via inclusive, collaborative and reflexive research practices and research interventions for and with inmate participants. Through recontextualization of research practices and pedagogies, the research is considered as a form of resistance to the monolingual and monocultural discourses which dominate in the superdiverse prison context.

Evidence-based meets community-centred: A new approach to creating informal learning opportunities for children.

Informal learning spaces present ripe opportunities to supplement formal learning experiences. In this paper, we offer a new approach to creating enriching learning activities for public spaces that reflects evidence-based practices rooted in developmental psychology and uses community-centring practices from participatory research approaches. We first argue that extant theory and research supports the use of guided play pedagogy to foster learning. Second, we argue that effective translation of research to practice should incorporate community voices at every stage of the design, implementation and evaluation process. We describe a new initiative called Playful Learning Landscapes that reflects tenets of core developmental theory including constructivism and social learning theories as well as guided play pedagogy. Playful Learning Landscapes also extends the scope and scale of these evidence-backed theories by collaborating with communities to design activities for local community spaces. Taken together, we offer a way of upholding core developmental theory with equitable, culturally inclusive research and intervention practices. Transforming community spaces into hubs for children's learning promises wide-reaching implications for equitable access, school readiness and early childhood education.

Improving ethnic and racial diversity within clinical trial populations through community recruitment and inclusion initiatives: Experience from MyTACTIC.

e13679 Background: Clinical trial populations are not typically ethnically diverse, restricting healthcare equity and the generalizability of clinical trial data to real-world populations. Moreover, mostpatients (pts) with cancer in the US receive treatment in the more diverse community setting, where minority groups are usually better represented but with lower trial enrollment rates than academic centers. MyTACTIC (NCT04632992) is a phase II, non-randomized basket trial evaluating targeted therapies in pts with advanced solid tumors with specific biomarkers. Inclusive research practices, including mostly community recruitment, were implemented in MyTACTIC to improve access for patients who may otherwise not have been able to enroll. This retrospective analysis presents their impact on the diversity of the trial population. Methods: Adult pts with advanced solid tumors were enrolled from community cancer clinics (private practices and community hospitals) or large academic centers, into 1 of 15 arms based on biomarker alterations. Inclusive research practices implemented to diversify pt recruitment included: revision of eligibility requirements to be more inclusive for minorities; language simplification and streamlining of study protocol; training activities; free transportation. We compared race and ethnicity data between the study population and trial sites’ catchment area (geographical area of pts around the clinical site). Results: Forty pts, all of White race, were initially enrolled across 14 sites, which prompted additional focus on diversity efforts. The trial was expanded to 45 sites across 21 states: 252 pts were enrolled (83% of White race) (Table). Most (96%) selected sites (n=249 pts) were community clinics. The proportion of pts from racial minorities was generally higher in study centers from ethnically diverse catchment areas. Protocol streamlining and staff training were also beneficial to pt recruitment. Free-ride transportation removed the barrier of access to clinical trial sites. The impact of other initiatives will be presented. Conclusions: Running clinical trials at community oncology sites does not, in itself, equal increased diversity of study populations: other efforts, including but not limited to free transportation and community site selection, are also needed. Here we share some learnings from the MyTACTIC study, based on outcomes from the various inclusive research practices implemented in this trial. Clinical trial information: NCT04632992 . [Table: see text]

Delta voices of climate crisis: Community Digital Storytelling in Bangladesh and Vietnam

This article explores the audiovisual research method Community Digital Storytelling (CDST) as developed for a project documenting Indigenous delta voices in Bangladesh and Vietnam. Centred on the co-production and collection of community stories, this interdisciplinary method incorporates smartphone filmmaking, environmental storytelling, community-based participatory research, and Indigenous methodologies. Addressing community participation, power dynamics and fieldwork challenges, CDST is presented as an adaptable method capable of capturing eco-imaginaries, fostering dialogue on socioecological challenges, and amplifying the voices of marginalised communities. The article contributes a valuable guide to participatory media production with communities in various contexts, offering insights for scholars and practitioners seeking inclusive, respectful, and impactful research practices.

An Evaluation of Racial and Ethnic Representation in Research Conducted with Young Adults Diagnosed with Cancer: Challenges and Considerations for Building More Equitable and Inclusive Research Practices.

The psychosocial outcomes of adolescents and young adults (AYAs) diagnosed with cancer are poorer compared to their peers without cancer. However, AYAs with cancer from diverse racial and ethnic groups have been under-represented in research, which contributes to an incomplete understanding of the psychosocial outcomes of all AYAs with cancer. This paper evaluated the racial and ethnic representation in research on AYAs diagnosed with cancer using observational, cross-sectional data from the large Young Adults with Cancer in Their Prime (YACPRIME) study. The purpose was to better understand the psychosocial outcomes for those from diverse racial and ethnic groups. A total of 622 participants with a mean age of 34.15 years completed an online survey, including measures of post-traumatic growth, quality of life, psychological distress, and social support. Of this sample, 2% (n = 13) of the participants self-identified as Indigenous, 3% (n = 21) as Asian, 3% (n = 20) as "other," 4% (n = 25) as multi-racial, and 87% (n = 543) as White. A one-way ANOVA indicated a statistically significant difference between racial and ethnic groups in relation to spiritual change, a subscale of post-traumatic growth, F(4,548) = 6.02, p < 0.001. Post hoc analyses showed that those under the "other" category endorsed greater levels of spiritual change than those who identified as multi-racial (p < 0.001, 95% CI = [2.49,7.09]) and those who identified as White (p < 0.001, 95% CI = [1.60,5.04]). Similarly, participants that identified as Indigenous endorsed greater levels of spiritual change than those that identified as White (p = 0.03, 95% CI = [1.16,4.08]) and those that identified as multi-racial (p = 0.005, 95% CI = [1.10,6.07]). We provided an extensive discussion on the challenges and limitations of interpreting these findings, given the unequal and small sample sizes across groups. We concluded by outlining key recommendations for researchers to move towards greater equity, inclusivity, and culturally responsiveness in future work.

Latina mothers in participatory action research: Insights and reflections of a mathematics co-design session tool

Co-design methods offer a powerful collaborative approach that allows for integrating various participants’ needs and expectations in the design process. However, current co-design tools often reflect a Eurocentric bias, limiting their utility in diverse settings. This article explores co-design methodologies and their application in a study with Spanish-speaking Latina mothers living in Southern California. I focus on co-design tools and processes, integrating culturally sustaining methods that respect and value the lived experiences of Latina mothers. Drawing from a qualitative phenomenological research approach and using in-depth interviews, the study underscores the mothers’ ways of knowing, highlighting personal math experiences and traditions in co-design sessions where the mothers sought to develop a math activity for their children. The article contributes to the literature on co-design methodologies to include culturally inclusive research tools and practices, emphasizing a co-design process that works “with” rather than “for” nondominant social groups.

The status of drug evaluation in older adults in the United Kingdom: Bridging the representation gap.

Older adults are persistently underrepresented in clinical drug trials worldwide, despite increasing multiple long-term conditions and significant prescribing in this demographic. We discuss systemic challenges such as the exclusion of people with comorbid conditions and the lack of assessment for comorbidities as modifiers of treatment effects and highlight the rising trend of polypharmacy, especially among the oldest age groups, which is linked to a significant percentage of unplanned hospitalizations and medication errors. The consequences of these trends prompted the United Kingdom National Overprescribing review, culminating in a set of recommendations for drug development tailored to older adults. Building on this, two critical reports released in April 2023 by the International Longevity Centre (ILC) and the Nuffield Council on Bioethics (NCOB) are discussed. These reports emphasize the importance of diversity and inclusion in clinical trials, advocating for ethical frameworks and methodologies that cater to the complex needs of older adults. The development of inclusive criteria, innovative statistical methodologies, and the integration of patient-reported outcomes are needed to address the persistent barriers to older adult participation in research, suggesting that pragmatic trials, exemplified by the UK's RECOVERY trial during the COVID-19 pandemic, could pave the way for more inclusive research practices.

Epigenetic modifications in solid tumor metastasis in people of African ancestry.

This review focuses on the critical role of epigenetic modifications in solid tumor metastasis, particularly in people of African ancestry. Epigenetic alterations, such as DNA methylation, histone modifications, alterations in non-coding RNAs, and mRNA methylation, significantly influence gene expression, contributing to cancer development and progression. Despite the primary focus on populations of European, American, and Asian descent in most cancer research, this work emphasizes the importance of studying the unique genetic and epigenetic landscapes of African populations for a more inclusive approach in understanding and treating cancer. Insights from this review have the potential to pave the way for the development of effective, tailored treatments, and provide a richer resource for understanding cancer progression and metastasis. Specific focus was placed on the role of DNA methylation, histone modifications, non-coding RNAs, and mRNA methylation in solid tumor metastasis, including how these modifications contribute to the regulation of tumor suppressor genes and oncogenes, influence cellular pathways and signaling, and interact with the immune system. Moreover, this review elaborates on the development of epigenetic-targeted therapeutic strategies and the current advances in this field, highlighting the promising applications of these therapies in improving outcomes for African ancestry populations disproportionately affected by certain types of cancer. Nevertheless, this work acknowledges the challenges that lie ahead, particularly the under-representation of African populations in cancer genomic and epigenomic studies and the technical complications associated with detecting subtle epigenetic modifications. Emphasis is placed on the necessity for more inclusive research practices, the development of more robust and sensitive methods for detecting and interpreting epigenetic changes, and the understanding of the interplay between genetic and epigenetic variations. The review concludes with an optimistic outlook on the future of epigenetic research in People of African ancestry, urging the concerted efforts of researchers, clinicians, funding agencies, and policymakers to extend the benefits of this research to all populations.

Figuring Out an Accessible PEDI-PRO Score Report for Young Adults With Disabilities

Abstract This article was written by three researchers with intellectual and developmental disabilities, with the support of the researcher primary investigator, who worked together to make an accessible report for the new PEDI-PRO app. We start by describing the PEDI-PRO software and why it’s important to have an accessible PEDI-PRO score report. Next, we describe how we used inclusive research practices to design the score report. Finally, we each highlight what we like about doing research. We think this research is important because it can help people do things like have a job, be independent, and live on their own.

Advancing and Expecting Inclusive Research

Abstract This conceptual methods article parallels remarks given at the 2022 American Association on Intellectual and Developmental Disabilities conference highlighting the importance of including the voices of people with intellectual disability in research processes. The purpose of this article was to put forth a call to action to disability researchers to advance, expect, and model inclusive research practices and consider this action as a form of scholarly activism and allyship toward the intellectual and developmental disabilities community. This conceptual article is organized to engage existing inclusive research literature and offers a method of inclusive research team design with practical suggestions for consideration. Finally, implications for research policy are also presented.

Policy Silences and Poverty in Ireland: An Argument for Inclusive Approaches

Policy documents shape and inform policy but they are not neutral objects. Policy documents can also silence through the exclusion and omission of discrete knowledges transmitted through testimony and lived experience. Even where steps are taken to ensure inclusion, policies can be underpinned by a policy making process that also potentially omits and silences through a narrow conception of how to include the voices of those directly affected by policy in the policy making process. This article will address the phenomenon of “policy silences” in the following ways: Firstly, by taking inspiration from Bacchi’s (2009) policy analysis framework—which asks of policy documents “what is the problem represented to be?” (the WPR approach)—and focusing on question no. 4 of the WPR framework—which asks, in part, “where are the silences?”—the Irish policy document &lt;em&gt;Roadmap for Social Inclusion 2020‐2025&lt;/em&gt; will be briefly reviewed. Following this, the approach taken in a creative, arts‐based, participatory research project which included, mapping, photography and walking interviews as a means of exploring the lived experiences and hidden geographies of poverty will be presented as a way of demonstrating inclusive research practice and as a means of tacitly problematizing and further critiquing an anaemic understanding of inclusion which potentially creates “policy silences.” Finally, an argument for forms of inclusion that go beyond current practices to include, in creative ways, the voices of those directly affected by policy in the policy making process will be put forth.

“Will I Be Celebrated at the End of This Training?” Inclusive Research in Kenya

The development and practice of inclusive research with people with intellectual disabilities is complex, revealing challenges and lessons that inform innovative and novel methodological approaches. In Africa, inclusive research still lags for various reasons. First, due to societal misconceptions that portray people with intellectual disabilities as unable to self-advocate or as lacking agency and self-determination; second, due to a lack of trained researchers and ethics committees on inclusive research practices. This paper critically reflects on and discusses the strategies and methods used to conduct an inclusive research study in Kenya. The focus was on the methodological approach of including people with intellectual disabilities as researchers in Kenya. Two people with intellectual disabilities were trained as research assistants. This paper describes the experiences with Institutional Review Boards, the processes and experiences while training this research assistants using a UK-developed curriculum, and fieldwork experiences while piloting interview guides, conducting interviews, and conducting focus groups with this research assistants. This study findings indicate the need to culturally adapt co-researcher training, the importance of working with support personnel who empower researchers with intellectual disabilities, and the need for greater advocacy to change negative attitudes towards people with intellectual disabilities that hinder their participation in research.

Including People Who Use Augmentative and Alternative Communication in Qualitative Research: Can You Hear Us?

People who use augmentative and alternative communication (AAC) are frequently excluded from research, yet their voices can significantly enhance the applicability, acceptability, and translation of qualitative research findings. Accessible and adapted research methods welcome and empower participants who use AAC, and enable meaningful involvement. In this article, we describe the collaborative development of a framework to conceptualise inclusive research and aspects of an accompanying inclusive research toolkit. The framework identifies balancing power as a critical factor, primarily achieved by ensuring that research methods and materials are accessible to people who use AAC. We propose that this is achieved through three interacting elements: collaboration with AAC users, skills and knowledge to achieve accessibility, and ensuring adequate time is available to achieve involvement. We identify five areas where applying these elements has impact for AAC users: recruiting AAC users, working with communication supporters, adapting research methods, securing ethics approval, and consent. In presenting the framework, we demonstrate how qualitative researchers can foster a research environment that values and actively includes AAC users, ultimately advancing the field towards more comprehensive and inclusive research practices. While our work is situated in the cerebral palsy and AAC communities, our proposed framework and toolkit can be applied by researchers seeking perspectives from individuals with communication disabilities more broadly. We have created a corresponding plain language video of this article as an additional means of optimising accessibility of the content. See supplemental material .