Diversity in Research

Why is diversity in research important?

Our society has changed a lot in the past few years. One way it has changed is there is greater awareness of different groups of people. These groups are usually based on race, gender, age, religion, how much money they make, and/or who they love.

When researchers only study one group of people, they might not see the whole picture. Diversity allows for more robust research.

In healthcare, it can provide deeper understanding and perspectives about real-world problems. For example, people can react differently to medications or devices. New and surprising side effects can occur when a broader group of people participate or are included in a study. If researchers do not find out about these side effects until after the medication or device are available, it becomes a problem that could take years to fix.

Which groups of people are underrepresented in research?

Many population groups in the United States are often underrepresented in research:

• People from racial and ethnic minority groups such as African Americans, Hispanic/Latinos, Asian/Pacific Islanders and Native Americans

• Senior citizens and the elderly

• Women

• LGBTQ+ population

• Children

• People with disabilities

What can diverse groups gain by participating in research?

Here are some ways that people in racial and ethnic minority groups can benefit from research studies:

1. You can represent your community. By taking part in a study, you can inspire others like you to share their experiences. You can help them overcome any reasons that might be holding them back.

2. You can learn about the study results. Many studies will share the results with you. This means you can find out how the medicine or device being studied affected your body and health.

3. You can improve your health. By participating in a study, you can learn ways to make yourself healthier and feel better.

4. You can learn about new medications, devices and treatments. In some studies, you might get to try out new medicines, devices or treatments that aren’t available to the public yet. This can give you valuable information about different options for your health.

5. Your participation helps researchers. The more information researchers can gather from diverse communities, the better they can create new and improved medications and devices. So, by taking part in a study, you are helping to make better medicines and devices for your community.

What are researchers and organizations doing to improve diversity in studies?

Allergy & Asthma Network is working to ensure that research studies include more groups of people. For years, researchers were not required to include diverse groups of people in research studies. Some companies that make medications or devices did not consider it important, either.

Now, researchers are increasingly bringing studies to places where people live. They are working with local hospitals or clinics in diverse neighborhoods. This way, people do not have to travel far for short study sessions. Also, televisits with researchers are increasingly an option.

We know it is important for people to trust the researchers conducting the study. As part of research study and clinical trial recruitment, we strive to partner with researchers from diverse backgrounds who want to improve minority participation in research studies. We also want you to feel comfortable with researchers and feel like you can talk to them.

The main goal of research studies is to help people like you. It is important that you feel connected to the people doing the study.

What resources are available for diverse communities?

We know you may have unique needs. We recognize you may have a specific focus when deciding to take part in research. Talk to researchers and organizations who are doing research close to where you live or ask questions online. Identify the topics that are important to you and ask questions to learn more.

Find a clinical trial or ongoing study that fits your needs. We need your cultural diversity and research participation. You can also find a clinical trial using Antidote’s MATCH online search.

What does race and ethnicity mean?

Race and ethnicity are two words we hear a lot, especially when it comes to asthma and allergy research for diverse populations.

Race and ethnicity are two distinct but related concepts. They are used to categorize and classify groups of people based on certain characteristics. Everyone can have different racial and ethnic backgrounds.

Race categorizes people into different groups. It is based on physical attributes such as skin color, hair texture, and facial features. But it is important to note that race is not biologically determined. It is a social construct that varies across different societies and cultures.

Here is a breakdown of U.S. population by race. This is according to the 2020 U.S. Census.

• White (non-Hispanic): 57.8%

• Hispanic/Latino: 18.7%

• Black/African American (non-Hispanic): 12.1%

• Asian American: 5.9%

• Multiple races: 4.1%

• American Indian/Alaskan Native: 0.7%

• Other race: 0.5%

• Native Hawaiian/Pacific Islander: 0.2%

Ethnicity refers to a shared cultural heritage and cultural differences. This includes language, customs, traditions, and beliefs. All these factors can vary from one diverse group of people to another. Ethnicity is often associated with a common geographic origin or ancestry. It can be passed down through generations.

Thus, race is about how people look, like their skin color and hair. Ethnicity is about a group’s culture, like their language and traditions.

Both race and ethnicity are important because they help us understand and appreciate the differences and diversity among people. Racial differences and ethnic differences can bring new information to healthcare. It helps identify themes between the general population and other community members.

What percentage of research studies include people from racial and ethnic minority groups?

Currently there is not enough data available to determine a racial and ethnic breakdown of asthma and allergy clinical trial participation.

We do know that in cancer clinical trials, most of the people who participate are white. Out of all the research participants, only 18% were Black, 3% were Asian, and 6% were Hispanic/Latino.

What barriers keep people from racial and ethnic minority groups from participating in research?

Many people in under-resourced communities say they have a hard time joining research studies. Why is this?

• Some may not be aware of relevant research studies. They may not have access to information about how to participate in research.

• Some may not trust the medical community because of historical mistreatment or misinformation.

• Social and economic factors affect where people live, how much money they have, and their access to healthcare. They can impact educational and job opportunities, which in turn can impact health insurance. It can also affect a person’s ability to participate in a research study or clinical trial. For example, some people may not be able to afford to take off from work to go to a clinical trial site. They may not be able to pay for childcare or transportation to get to a clinical trial site.

• Language barriers can cause communication issues and a lack of understanding of the goal or purpose of the research. For patients, especially those who are more comfortable speaking in a language other than English, this can be daunting. For researchers, these barriers can lead to incomplete and biased data collection.

Many people say they are excited to get involved in research. Different cultural factors can affect how people choose to join and stay in studies. However, it is unknown if cultural barriers are a reason why some ethnic groups are less likely to participate in research.

It’s important that researchers improve communication skills with diverse populations. Employing a staff that is diverse and multilingual can help everyone better understand each other.

How can people in racial and ethnic minority populations get involved in research?

Talk with your healthcare professional about a research study in your area or online. They may know about a local study that needs people like you. If you have questions about a research opportunity or want to take part in it, don’t hesitate to ask.

Talk openly with your family members, neighbors and friends about joining local studies in your area. Encourage others in your family and community to take part in research studies with you – maybe even share a ride.

You can find a clinical trial or ongoing study on Allergy & Asthma Network’s website. You can also find a clinical trial using Antidote’s MATCH online search.

In Focus: Native Americans and Research

The people who have lived the longest in North America have had many different names through the years. They are often referred to as Native Americans. Others call them Indigenous people or American Indians. Sadly, this population often lacks access to resources more than other groups. This makes them less likely to get the medical help they need. And it makes them less likely to participate in research studies and clinical trials.

Why is there a need to include more Native Americans in asthma and allergy research?

Research examining the health of Native American communities is lacking. For example, we don’t know a lot about asthma, allergy and eczema prevalence in Native Americans. In 2018, one study attempted to address this. National Jewish Health in Colorado conducted a study that examined barriers to asthma care faced by Native American children.

Native Americans are more likely to have asthma. They may live in an area with more air pollution or in homes with more asthma triggers such as mold or pests. More Native American women have asthma than men. When considering age groups, Native Americans between 25 and 74 years old are twice as likely to have asthma as other people in other age groups. One recent study of Navajo Nation children revealed that half of them required hospitalization or urgent care for asthma attacks. Many in the study did not have a controller inhaler.

Research helps us identify why these disparities are occurring. It also helps us develop education programs to raise awareness of risk factors and find solutions.

What are barriers to Native American participation in research?

Similar to other under-resourced communities, Native Americans have a level of distrust in the medical community. They cite the following factors leading to this distrust:

• lack of collaboration

• lack of transparency

• lack of respect for them and their culture

Researchers must work to establish greater trust and relationships among this population group. It is important that researchers do not take advantage of or misuse this trust.

How can Native Americans get involved in research?

Researchers are starting to bring more research studies into Native American communities. They aim to build strong relationships in these communities. They are making sure Native Americans are aware how their information is used in medical research.

If you are Native American and you’re interested in learning about or participating in medical research, speak to researchers and healthcare professionals about the types of research that work for you and your people.

Don’t hesitate to speak freely and openly. Inform researchers if the research needs to be delayed or held at a different time because of tribal ceremonies, rituals, or family gatherings. Ask for researchers who represent your community and know your language and culture.

Find a clinical trial or ongoing study near you on Allergy & Asthma Network’s website. You can also find a clinical trial using Antidote’s MATCH online search.

In Focus: LGBTQ+ in Research

Allergy & Asthma Network works toward fostering an environment that is safe, inclusive and equitable for LGBTQ+ people in research. We believe that sexual orientation and gender identity are human rights. We are committed to promoting equality and respect for all people.

LGBTQ+ people face unique challenges in healthcare and participating in research. We encourage researchers to foster an open and welcoming environment in research studies.

Why is there a need to include LGBTQ+ in asthma and allergy research?

The LGBTQ+ population faces unique risk factors and barriers to healthcare. Only in recent years have researchers started to study the LGBTQ+ population for asthma and allergies.

Researchers have found that gay or bisexual male youths are at higher risk of asthma compared to those who are not gay or bisexual. LGBTQ+ people who smoke are also more likely to get asthma.

Research helps us identify why these risk factors are occurring. It also helps us develop education programs to raise awareness of the risk factors and find solutions.

What are barriers to LGBTQ+ participation in research?

Research involving LGBTQ+ people is lacking. Barriers that may limit their participation in clinical studies include:

• fear of ill treatment

• lack of privacy

• mistrust of health professionals

• lack of understanding about the research process

• study design concerns

Allergy & Asthma Network supports inclusivity in research for the LGBTQ+ community. We are working to address barriers and encourage participation in research.

How can LGBTQ+ people get involved in research?

Be open to sharing your specific medical needs with healthcare providers. Ask for an inclusive intake form. Feel free to share your preferred name and pronouns with research staff. Find out how the information you provide for the study will be shared, and with whom.

You can find a clinical trial or ongoing study that fits your needs. You can also find a clinical trial using Antidote’s MATCH.