Diversity, Equity, and Inclusion for Rare Disease
RARE-X’s Diversity, Equity, and Inclusion Mission:
RARE-X believes that diversity, equity, and inclusion are the core of our work. We strive to promote the advancement of inclusive rare disease communities that value diverse, innovative strategies to solving the complex needs of rare disease patients. We accomplish this mission by engaging rare disease communities, leveraging national multi-disciplinary partnerships, identifying best practices for collecting diverse data, and fostering an organizational culture of continuous internal reflection and proper adjustment to accomplish our vision.
RARE-X’s Ongoing Commitment to DEI
RARE-X’s Commitment is:
Initially, our approach focuses on the diverse and equitable collection of data from multiple, unique stakeholders via the following methodologies: surveys, focus groups, and interviews that add the necessary, variable perspectives to these critically important issues.
Typically, the collection of data from other national organizations address age, sex, and race/ethnicity. Our approach is to incorporate these traditional methods of defining diversity and expand upon them to include other critical factors, such as income, disability, language discordance, health access, and gender identity, in this and future projects through ongoing listening and learning–a meaningfully rich, ongoing dialogue.
We acknowledge that any discussion of diversity, equity, and inclusion must be informed by other, less frequently discussed, and analyzed considerations, such as culture and privilege, which have historically, too often, marginalized or neglected certain communities’ access and choice in healthcare and medical research. Put simply, we are committed to authentically engaging in an ongoing, meaningful dialogue from those whom we interact with, but also to foster and adopt lasting changes to the lives of those of us who fall under the ever-widening umbrella known as rare disease.
How RARE-X approaches DEI
As we embark on a journey to address DEI concerns within the rare disease space, we commit to the following:
Our efforts will constantly evolve in addressing DEI. Initially, our approach focuses on data collection– surveys; focus groups; and interviews– which adds necessary, variable perspectives to these critically important issues.
Typically, the collection of data from other national organizations address age, sex, and race/ethnicity. Our approach is to incorporate these traditional methods of defining diversity and expand upon them to include other critical factors, such as: income, disability, language discordance, health access, and gender identity, in this and future projects through ongoing listening and learning–a meaningfully rich, ongoing dialogue.
We acknowledge that any discussion of diversity, equity, and inclusion must be informed by other, less frequently discussed, and analyzed considerations, such as: culture and privilege, which have historically, too often, marginalized or neglected certain communities’ access and choice in healthcare and medical research. Put simply, we are committed to authentically engaging in an ongoing, meaningful dialogue from those whom we interact, but also to foster and adopt lasting changes to the lives of those of us who fall under the ever-widening umbrella known as rare disease.
What is DEI?
Diversity:
Diversity involves intentionally building teams that respect individual differences not limited to characteristics based on the following: Race, Disability Status, Religion, National Origin, Ethnicity, Military Service, Age, Socioeconomic Background, Gender, Language, Sexual Orientation, Gender Identity, Culture, Political Perspective.
Equity:
We assume there are biases that exist in society that create an unequal playing field for many. Equity involves leveling the playing field for every individual by providing the necessary resources to ensure equal access to opportunities for success.
Inclusion:
Inclusion embodies the act of including everyone in all aspects of society regardless of their unique characteristics and experiences, understanding that this uniqueness brings necessary perspective to the larger society.
Why is it important?
DEI programs and policies are essential to promoting equal representation for all. Research has shown the following values added:
- Boosts team performance
- Innovation
- Promotes equal access to opportunities
- Creativity
- Boosts engagement
- Promotes thinking from a broader global perspective
- Positive environment
- Profitability
- Trust
- Feelings of belongingness
- Productivity
- Employee engagement
- Reduced conflict and improved relationships
- Better health
- Increased resilience and trust
- Levels of learning and performance
- Reduced stress
- Happier more productive employees
- Greater effective commitment
- Culture of positivity
RARE-X has always believed if we remove barriers to access to best-in-class technology, with proper awareness, support and governance, we will enable patients and researchers to securely share and gain access to critical patient data, that will change the ecosystem of rare disease for patients and their families. Patient-owned data, well-structured and governed, will support the advancement and acceleration of disease understanding, drug discovery and development. However, we know there are inequities impacting patients’ ability to meaningfully participate in research. With this in mind, we are embarking on a scoping review project that will assist us in developing an inclusive, diverse, and equitable platform.
The Realities :
- According to the US Census Bureau, the demographics of the US population are shifting with non-whites representing more than 50% of the population in a span of 30 years.1
- As this shift in demographics occurs, there is an increased need to create more diverse research cohorts. Currently, although Blacks and Latinos account for more than 30% of the US population, they account for 6% of all federally funded clinical trials.2
- This lack of participation can be associated with insufficient training on minority research, cultural and linguistic differences, financial constraints, and inconvenient site locations.3, 4
We recognize as we build RARE-X that: Participation = Success and Future Treatments. Therefore, we will ensure that our platforms are built and structured so ALL patients can participate easily by working with a trusted partner, who is rooted in patient advocacy and committed to serving their best interest.
To address RARE-X’s identified data challenges and its overall mission, we conducted a Diversity, Equity, and Inclusion Scoping Review Project.
References: 1Colby SL, Ortman JM, 2014, 2Oh SS et al., 2015, 3Burchard EG, Oh SS, Foreman MG, Celedón JC, 2015, 4Konkel, 2015
Resources
Health Equity Resource Toolkit for State Practitioners Addressing Obesity Disparities
Building Organizational Capacity To Advance Health Equity
Meaningful Community Engagement For Health And Equity
Developing Partnerships And Coalitions To Advance Health Equity
Identifying And Understanding Health Inequities
Health Equity-oriented Strategy Selection, Design, And Implementation
Making The Case For Health Equity
Addressing Health Equity In Evaluation Efforts
The Built Environment Assessment Tool Manual (An Adaptation of MAPS)
Improving Cultural Competence To Reduce Health Disparities
American Hospital Association #123forEquity Campaign to Eliminate Health Care Disparities
Web Content Accessibility Guidelines (WCAG) Overview
How to Create Diversity in Your Organization
Advancing Diversity, Inclusion, And Health Equity To The Next Level
Diversity, Equity, and Inclusion That Matter
A Deliberate Path Toward Diversity, Equity, And Inclusion Within The ASCI
Incorporating Diversity Into Medical Education
Reporting Grantee Demographics For Diversity, Equity, And Inclusion In Neuroscience
Advancing Diversity, Equity, And Inclusion In Hospital Medicine
Answering The Challenge: Diversity, Equity, And Inclusion As A Key To Professionalism
Website Accessibility Checklist – Should You Be Using One?
Why Web Accessibility Is Important and How You Can Accomplish It
10 Ways to Make Your Website Accessible
DEI News
RARE-X Launches DEI Scoping Project
RARE-X Launches Diversity, Equity, and Inclusion Program
Ensuring RARE-X Data Represent the Diversity of Rare Diseases