Curated Resources on Diversity, Equity, and Inclusion for Disability and Rehabilitation Researchers

Introduction

Ultimately, rehabilitation researchers aim for meaningful, high-quality research that helps improve care and outcomes for individuals with disabilities. Recent national discussions of race, inequity, privilege, and power have highlighted the need to rethink who is included in research, how they are included, and the impact inclusive research has on those individuals or communities. Diverse voices from traditionally underserved and underrepresented communities (that is, diversity), increased opportunities for participation in significant roles (equity), and the participation of communities typically excluded from research (inclusion) help ensure the findings that inform programs, policies, and the greater body of research truly reflect those who are studied and affected. For rehabilitation researchers, incorporating diversity, equity, and inclusion (DEI) in all aspects of their work helps to achieve the greatest impact for disability communities by ensuring those perspectives are incorporated throughout the process, leading to improved treatment options, outcomes, and experiences for individuals and their families and caregivers.

From the construction of a research team to the sharing of data and findings with a wider audience, researchers affect who does and does not benefit from the work they do. This curated list of resources includes evidence-based strategies, toolkits, training, and best practices for improving diversity and advancing equity and inclusion at all stages of research and knowledge translation. These resources are organized by the following topics:

Building diverse research teams
Stakeholder engagement
Conducting equitable and inclusive research
Communicating data
Supporting research use
Further reading

Building Diverse Research Teams

Bias Interrupters: Identifying and Interrupting Bias in Meetings

https://biasinterrupters.org/wp-content/uploads/Identifying-Bias-in-Meetings-.pdf

Group leaders support all team members and their contributions by identifying and stopping common patterns of bias. So-called Prove-It-Again! (PIA) groups that are stereotyped as less competent often have to prove themselves repeatedly. PIA groups include women, people of color, individuals with disabilities, older employees, LGBT+, and class migrants. Extensive research finds that such PIA groups must be more competent to be viewed as equal in competence to their peers.

Evidence-Based Strategies for Improving Diversity and Inclusion in Undergraduate Research Labs

https://www.frontiersin.org/articles/10.3389/fpsyg.2019.01305/full

This paper identifies ways to overcome the challenges that underrepresented students face, including bias, isolation, and a lack of mentorship. It describes solutions to challenges that involve recruiting, selecting, and retaining diverse undergraduate researchers working toward publishable work. As the country diversifies and the education system broadens to include online learning, all types of opportunities should be accessible to everyone, including participation in research labs. Together, with our collective efforts, we can move toward more equitable educational institutions that can lead the way in providing equal educational opportunities to all.

Stakeholder Engagement

Preferred Terms for Select Population Groups and Communities

https://www.cdc.gov/healthcommunication/Preferred_Terms.html

Language in communication products should reflect and speak to the needs of the audience of focus. This resource, produced by the Centers for Disease Control and Prevention (CDC), provides preferred terms for select population groups; the terminology represents an ongoing shift toward non-stigmatizing language.

Best Practices for Engaging Underserved Populations

https://www.researchgate.net/publication/320091880_Best_Practices_for_Engaging_Underserved_Populations

This research developed and applied best practices in engaging marginalized populations to collect data, attitudes, and opinions around a research topic. Data-driven simulation models are being developed to support city stakeholders making decisions to create more sustainable and equitable cities. To ensure these models are equitable, they must include the needs of marginalized populations; however, researchers often have struggled to reach and engage underserved populations. In this work, best practices were developed through a review of literature from such areas as psychology, communication, and community planning. These practices (Earn Trust Through Partnership, Be Multilingual & Inclusive, Communicate for Understanding, Respect Work Schedules and Cultural Norms, and Offer Something Useful) then were applied to the design of a data collection exercise for the study of weatherization decision making and behaviors of urban residents in an economically disadvantaged community. The process led to positive results, with high levels of participation and engagement. These best practices allowed researchers to better engage with the population, benefiting both groups. The development of these practices will aid researchers in better engaging underserved populations across many areas of study.

How to Engage Stakeholders in Research: Design Principles to Support Improvement

https://health-policy-systems.biomedcentral.com/articles/10.1186/s12961-018-0337-6

The health research system faces a key challenge in closing the gap between research production and use. Health research funding organizations, as well as many researchers themselves, are increasingly promoting stakeholder engagement across the board as an important pathway to achieving impact. This opinion piece drew on a study of stakeholder engagement in research and a related systematic literature search.

Researchers, Patients, and Other Stakeholders’ Perspectives on Challenges to and Strategies for Engagement

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7539495/

Interest is growing in patient and stakeholder engagement in research, yet evidence about effective methods is limited. Since 2012, the Patient-Centered Outcomes Research Institute (PCORI) has funded patient-centered comparative effectiveness research with a requirement to engage patients and other stakeholders as partners in study planning, conduct, and dissemination. This requirement, unique among large healthcare research funders in the United States, provides an opportunity to learn about challenges encountered and specific strategies used by PCORI-funded study teams. The primary objective of this study is to describe—from the perspective of PCORI investigators and research partners—the most common engagement challenges encountered in the first 2 years of the projects and promising strategies to prevent and overcome these challenges.

George and Fay Yee Centre for Healthcare Innovation Resources

https://www.chimb.ca/resources

This resource list includes methods for stakeholder engagement and measurement strategy, as well as a free Microsoft Excel-based calculator that guides researchers through the creation of an inclusive and meaningful budget for public and patient engagement.

The Importance of Outreach to Underserved Populations

https://ecommons.cornell.edu/bitstream/handle/1813/89970/SS36_PDF1.pdf?sequence=1

This resource, developed by Cornell University’s IRL School Employment and Disability Institute, highlights the need to build trusting relationships with the Latino community to support higher participation in the labor market. It lists strategies for identifying cultural barriers and methods to increase Latino involvement in governmental problems.

Conducting Equitable and Inclusive Research

Upending Racism in Psychological Science: Strategies to Change How Our Science is Conducted, Reported, Reviewed and Disseminated

https://psyarxiv.com/6nk4x

As efforts to end systemic racism gain momentum across various contexts, it is critical to consider anti-racist steps needed to improve psychological science. Current scientific practices maintain White supremacy, with significant and impactful consequences. Extant research practices reinforce norms of homogeneity within BIPOC (Black, Indigenous, and other people of color) populations, segregate theories and methods derived from BIPOC groups, apply disparate standards to the evaluation of research on White versus BIPOC populations, and discourage BIPOC scholars from pursuing research careers. Perhaps consequently, mental and physical health disparities persist. This article presents examples of how epistemic oppression exists in how psychological science is conducted, reported, reviewed, and disseminated. It also offers specific recommendations for different stakeholders, including those involved in the production, reporting, and gatekeeping of science as well as consumers of science. Additionally, this paper moves beyond a discussion of problems and potential solutions by offering measurable outcomes that can ensure accountability. Journal editors and publishers can use this diversity accountability index to measure potential benchmarks of progress, promote dialogue and action, challenge inequity, and upend the influence of White supremacy in psychological science.

Toolkit for Centering Racial Equity Throughout Data Integration

https://aisp.upenn.edu/centering-equity/

Cross-sector data sharing and integration transform information about individuals into actionable intelligence that can be used to understand community needs, improve services, and build stronger communities. Yet, use of cross-sector data also can reinforce legacies of racist policies and produce inequitable resource allocation, access, and outcomes. In identifying best practices to center racial equity in data integration efforts, Actional Intelligence for Social Policy (AISP) at the University of Pennsylvania found that centering racial equity is not a single, discrete step. AISP created this toolkit describing positive and problematic practices for centering racial equity across the six stages of the data life cycle.

Reaching the “Hard-to-Reach”: Recruitment of Rural-Dwelling Adults With Disabilities

https://journals.sagepub.com/doi/abs/10.1177/1043659619856667?journalCode=tcna

There are 46 million individuals living in rural America who require unique consideration for rural health research. Recruitment of research participants from disparity groups can be difficult as these groups can be hard to reach. In particular, strategies for reaching rural-dwelling Americans with disabilities are not well-documented. Furthermore, researchers sometimes underestimate the time and effort needed to recruit participants from hard-to-reach populations. This article reports on the methods used to recruit 12 rural-dwelling adults with disabilities into a qualitative study.

Communicating Data

Urban Institute's Do No Harm Guide: Applying Equity Awareness in Data Visualization

https://www.urban.org/sites/default/files/publication/104296/do-no-harm-guide.pdf

This guide and the associated checklists and toolkits focus on the often hidden or subtle ways in which data analysts and communicators fail to incorporate equitable awareness in the data they use and the products they create.

CDC’s Health Equity Considerations for Developing Public Health Communications

https://www.cdc.gov/healthcommunication/Comm_Dev.html

In this resource, the CDC offers several considerations when developing community guidance and public health communications, including the following:

Build a diverse workforce throughout levels, including leadership positions; consider the benefits of hiring people from the communities you serve, including those who are disproportionately affected, and who “look and sound” like the communities you serve.
Work with community partners to identify priorities and strategies, including the need to build community awareness and acceptance, before communication products are developed and released.
Avoid jargon and use straightforward, easy-to-understand language.
Ensure information is culturally responsive, accessible, and available. Information should represent people in the communities for whom the information is intended.
Similarly, ensure that information is available in appropriate formats (e.g., audio, video, Braille or large-print formats, visual/graphic imagery).

U.S. Department of Labor Standards on Reducing Language Bias in Chief Evaluation Office Products

https://www.dol.gov/sites/dolgov/files/OASP/evaluation/pdf/Standards_on_Reducing_Language_Bias_in_CEO_Products_May_2021_508c.pdf

The U.S. Department of Labor’s Chief Evaluation Office (CEO) aims to communicate in a way that reduces bias toward any particular group of people, reflects a broad range of identities and perspectives, and does not stereotype or demean individuals or groups based on unconscious bias or perceptions of personal characteristics, race, cultural background, or other personally identifying labels or categories. This document provides general standards for reduction of bias in language, as well as examples, a short discussion of how to apply bias-reduction principles throughout the evaluation lifecycle, and links to additional resources.

Considerations for Returning Research Results to Culturally Diverse Participants and Families of Decedents

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4617668/

As genomic medicine advances and immense amounts of data are generated that may potentially affect human health, there is increasing concern around which of these results matter to participants. There has been considerable debate over which research results to return to participants and when those results should be returned. To date, however, debates concerning the return of genomic results have not covered how those results should be returned, especially when the results come from minority and/or culturally diverse participants. This commentary explores cultural and ethical considerations, and shares insight from the author’s own Navajo background, concerning returning genomic research results to participants and potentially to families of culturally diverse backgrounds, with a special focus on considerations when the research participant is deceased, and raises points for further discussion.

Supporting Research Use

Why Sex and Gender Matter in Implementation Research

https://bmcmedresmethodol.biomedcentral.com/articles/10.1186/s12874-016-0247-7

Health research funding organizations and science journal editors recently have pushed efforts to strengthen sex and gender considerations in study design, conduct and reporting to ensure that research results apply to everyone. However, examination of the implementation research literature indicates that attention to sex and gender still has not affected research methods in this field.

Building Partnerships: Key Considerations When Engaging Underserved Communities Under the Mental Health Services Act

https://health.ucdavis.edu/crhd/pdfs/resources/building-partnerships-yellow.pdf

The purpose of this document, based on feedback from underserved communities on outreach and engagement that emerged in the context of a project on prevention and early intervention, is threefold: (a) introduce guiding principles of community engagement with underserved communities; (b) outline some guiding questions to assist counties in their MHSA community outreach and stakeholder processes; and (c) suggest specific strategies for County Mental Health Departments to nurture sustained and equitable partnerships with communities.