The past two years have revealed the ugly truth about diversity in research: it’s not been a priority. But with all of the media coverage, federal and NIH mandates, and even FDA guidelines now available, many researchers struggle with how to take real steps to reduce health disparities and achieve diversity, equity and inclusion in health research.
In order to achieve a diverse participant population for your research, you must clearly define what that means. Without understanding what a truly equitable participant population looks like, you will struggle to understand if you’ve successfully achieved your goal.
In working with organizations like the All of Us Research Program, we’ve found that there are things you can do to succeed in recruiting and retaining a diverse set of participants in your research.
This goes beyond listing desired ethnic, gender, socioeconomic, and other groups, and requires that you seek inputs into what obstacles they face, and what needs they have.
To be effective, begin by clearly defining your participant population.
The simplest way to begin this task is to ask, “Who are the desired participants to include in a research study?”
However, after doing this, you must reflect and also ask, “Is anyone being unintentionally excluded?”
There are many considerations to include. For example:
Depending on your particular research area, you may not need to include all of these considerations. However, to meet FDA mandates, you should explore each of these areas.
Then, seek input from colleagues or collaborators from some of these demographic areas, and ask them the same question: “Is anyone being unintentionally excluded?”
Seeking that input is a critical step, because without doing so, you risk creating your own ideas about under-represented groups. In research, you seek accuracy, so you should seek the same level of validation as you design your research protocol.
Supporting Your Participant Populations’ Needs
When it comes to preparing the tools and materials we need to promote and launch a research study, most researchers are focused on “speed to market.” In other words, with the sheer volume of effort to begin the study, preparing materials can become no more than a task to complete, rather than an exercise in understanding your participants.
However, there are baseline considerations you can explore. We’ll cover them here to help you begin.
Language is an obvious consideration, and you may need to support more than one. It’s also one that requires real planning and effort to ensure accessibility to non-native English speakers.
Develop a plan to document your assessment of the community, key policy decisions, standard operating procedures for implementation, documentation, and resources.
You’ve already defined the participant universe. Based on who you need to reach, ensure you understand the primary languages spoken by the population in your community. Evaluate language preferences from system EHRs, community organizations, and census data.
Do you need to stay in touch with your research participants? The answer to that question should determine how much effort you expend in translation. Some research has retention as a key goal, and other research studies return results to participants.
When either of these additional steps are a part of your protocol, you’ll need to go beyond just translation at the start of the study. You must consider the long-term implications of translation and your commitment to those participants.
And there are best practices to ensure your materials do the job of clearly communicating the value and purpose of your study.
Because ensuring successful language support for other languages requires planning and resources, don’t expand further than is necessary for your enrollment targets. Prioritize translation for the highest frequency language(s).
For the rest of your community, focus on improving readability.
Readability is how easy it is for a person to understand a piece of writing. Because medical terminology can stretch even highly educated participants, it is imperative that you include wording that is easy to understand. A commonly used standard is at grade level 7 (or below).
The CDC Health Literacy website has tremendous resources to ensure that complicated health and medical terms are communicated in an understandable manner.
You don’t have to translate into every spoken language to offer a more accessible set of study materials. However, you do need to ensure that materials are designed for easy consumption for non-native English speakers.
In addition to the CDC’s resources, here are some guidelines we use to ensure readability.
Adhere to plain language.
Seek resources to help you.
Craft a plan for facilitated consent. Document your answers to these questions.
If working with a health system for clinical interactions, be aware of their service level.
If you earnestly seek to increase the diversity in your participant population, start with your study materials.
Ensure the imagery you use is diverse across racial and ethnic groups. This includes anything your community will see, like:
Here are some important best practices in image selection that will help you succeed.
Strive to use images of diverse people in your own community, instead of relying on traditional or cultural dress images.
Avoid using images that promote inequity with status (e.g., participant is a person of color being treated by a White clinician).
Use artifacts, products, or other cultural assets only when they are relevant to the message you are trying to communicate.
Remember that successfully recruiting members of each racial and ethnic group in your community means considering them at each touchpoint. And ask for help from community groups to audit your images and materials.
In addition to race and ethnicity of your imagery, consider the gender presentation of the people in the images used in communications. Avoid stereotypes and ensure equity with status.
Here are some important best practices that will help you be inclusive in your communications.
If your study materials use wording that specifies gender pronouns, ensure you include non‐binary options (such as “they”). Alternatively, explore if you can remove references to gender altogether.
Ensure diversity in gender representation. For example, balance parenting across genders, and clinical and professional roles across genders.
For every image, ensure that your alternative text (alt text) is inclusively written, especially regarding pronouns and racial or cultural descriptors.
If you fail to consider the socio-economic status and culture differences across your community, you will risk losing credibility. To succeed in building the relationships you need to diversify your participant population, you must audit your materials and your protocol.
Consider these important questions:
Consider the Americans with Disabilities Act (ADA) requirements and guidelines. Information should be made available in accessible formats, and here are a few guidelines to review to support accessibility.
For digital tools and resources, ask:
For imagery and study materials, ask:
Achieving equity in research requires researchers to consider the many characteristics that define our diverse communities. It demands that we apply the same rigor to building an inclusive research protocol that we do to the data we seek in that research
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