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LGBTQIA+ Research Participation: Why It Matters and How You Can Help

Have you ever wondered how new medicines and treatments are developed? The answer is clinical trials. These studies test how well new medical approaches work, and they are an important step in bringing new treatments to people who need them.  

For these trials to work best, research participation needs to include all kinds of people: from different racial or ethnic backgrounds, across different regions, and different sexual orientations and gender identities. That’s where you come in. If you’re part of the LGBTQIA+ community, your participation in clinical trials is more important than you might realize. Your experience and your health matter. By participating in clinical trials, you can help shape the future of health care for yourself and your community, now and for generations to come.  

Why LGBTQIA+ Trial Participation Matters 

Historically, LGBTQIA+ individuals have often been left out of medical research. This means that fewer LGBTQIA+ people have been involved in studies compared to the percentage of people who are part of the community overall.  

This lack of representation has a real impact. LGBTQIA+ people often face unique health challenges. For example, studies show higher rates of certain cancers and mental health conditions in some LGBTQIA+ groups. By participating in clinical trials, you can help researchers better understand these differences and develop treatments that work for everyone. 

There are also some health concerns that are specific to LGBTQIA+ individuals. For instance, transgender people may have unique needs related to hormone therapy or gender-affirming surgeries. When LGBTQIA+ people are included in research, it helps health care providers offer more informed, compassionate care to all patients, including those with diverse sexual orientations or gender identities. 

Challenges and Solutions in LGBTQIA+ Clinical Research Participation 

LGBTQIA+ individuals may face some unique challenges when it comes to clinical trials. But for each challenge, researchers, organizations, and communities are working on solutions, as reported by Citeline: 
 

  • Lack of targeted outreach: Many clinical trials don’t specifically reach out to LGBTQIA+ communities  
    • Solution: Various organizations and groups are partnering with researchers to ensure trials are advertised in LGBTQIA+ spaces and media 
  • Fear of discrimination: Some LGBTQIA+ individuals have faced discrimination in health care settings  
    • Solution: Many research centers now offer LGBTQIA+ cultural competency training for their staff and design trials to be more inclusive  
  • Privacy concerns: Some may worry about disclosing their sexual orientation or gender identity  
    • Solution: Researchers are developing more sensitive ways to collect this information, including options to decline to answer and ensuring data protection 
  • Inclusive language and practices: Not all trials use inclusive language that makes LGBTQIA+ participants feel welcome; for example, a trial form that only includes male or female is not inclusive of nonbinary or intersex participants  
    • Solution: Guidelines are being developed for researchers on using inclusive language in all aspects of clinical trials
  • Logistical barriers: It might be challenging to find LGBTQIA+-inclusive research centers nearby  
    • Solution: More trials are offering remote participation options or travel support for participants 
  • Minimal regulation: Regulatory agencies have failed to address the lack of LGBTQIA+ representation in clinical trials 
    • Solution: While the U.S. Food and Drug Administration (FDA) guidance on diversity action plans for clinical trials does not mandate the collection of sexual orientation and gender identity (SOGI) data, the National Institutes of Health (NIH) has a five-year Strategic Plan to Advance Research on the Health and Well-being of Sexual & Gender Minorities.  
       

By getting involved in clinical trials, you can also be part of the solution! Your participation helps researchers learn how to make trials more inclusive and accessible. It also sends a message that LGBTQIA+ health deserves attention. 

Benefits of Participating in Clinical Trials 

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We’ve talked about why your participation matters for the LGBTQIA+ community as a whole, but there are also many potential benefits for you as a participant: 

  • Clinical trials often provide access to new treatments before they’re widely available. This could be helpful if you’re living with a condition that doesn’t have many effective treatment options. The medical care in trials can also help you better understand and manage your health. 
  • Some clinical trials offer compensation for your time and travel expenses; this depends on the specific trial. 
  • While this isn’t a direct personal benefit, many participants also find it rewarding to know they’re helping advance medical science and potentially improving lives. 
  • To see the impact that clinical trials have on treatments for patients, search Trialsummaries.com for easily understandable synopses of trial results. 

Every clinical trial is different, and the benefits can vary. It’s important to discuss the potential benefits and risks with the research team. 

How to Get Involved in Clinical Trials 

Ready to take part in a trial? Here are some ways to get started: 
 

  1. Talk to your health care provider: They might know of trials relevant to your health situation or can refer you to researchers in your area. Outcare provides a searchable database of LGBTQIA+-affirming health care providers. If you represent a health care organization and want to identify as an LGBTQIA+ ally, start here. 
  2. Use online resources: Websites like ClinicalTrials.gov allow you to search for trials based on your location, condition, and other factors. Some LGBTQIA+ health organizations also have lists of LGBTQIA+-inclusive trials. Fenway Health — which provides health care, research, education, and advocacy for the LGBTQIA+ and other underserved communities — has many ongoing studies through The Fenway Institute. 
  3. Contact LGBTQIA+ health centers: If there’s an LGBTQIA+-focused health center in your area, the staff might be aware of relevant trials or be conducting research themselves. 
  4. Check with local universities: Many clinical trials are conducted at university medical centers. Check their websites or contact their research departments. In fact, Stanford is currently recruiting for The PRIDE Study, the first large-scale, long-term national health study of its kind. 
  5. Join research registries: Some organizations maintain registries of people interested in participating in research. By joining, you’ll be notified when relevant studies become available.  

Remember, you always have the power to choose which studies you want to be part of and to ask for what you need during the process. 

You Can Make a Difference 

LGBTQIA+ participation in clinical trials is crucial for advancing health care that truly serves everyone. While there may be challenges in participating, there are also organizations and researchers working hard to make clinical trials more accessible and inclusive. By getting involved, you can become part of this positive change. 

Whether you decide to participate in a clinical trial, share this information with others, or simply learn more about LGBTQIA+ health research, you’re taking an important step. Every action, no matter how small, contributes to a future where health care truly serves all of us. 

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In 1994, I was a 37-year-old Army major stationed in Michigan with my wife, Cecelia, and our five-year-old daughter, Patrice. Little did I know that learning how to participate in clinical trials would save my life.   One morning before heading to work in January 1995, I went to the doctor’s office to get results from an MRI I had because of persistent back pain, which had been bothering me for six months. The doctor told me I had chronic myeloid leukemia (CML). He gave me three years to live. He then explained that the only potential cure was a bone marrow transplant. But, as an African American, my chances of finding a match were slim. There were — and still are — few people of color on the marrow donor registry. I took it upon myself to change that. I started organizing marrow drives, visiting churches, malls, colleges, and military bases nationwide.  In December 1995, I relocated to Atlanta, Georgia, and continued my efforts.  In April 1996, at a marrow drive in Columbus, Georgia, a local businessman with a different type of leukemia approached me. He shared his leukemia story, explaining how an experimental treatment at the MD Anderson Cancer Center in Houston had saved his life. He urged me to visit MD Anderson, so I did.   I flew to Houston and met a doctor who enrolled me in a few experimental treatments. But by 1998, after three years, they stopped working. I became extremely fatigued, waking up exhausted and in pain every day. Despite organizing and participating in numerous marrow drives, I had not found a matching donor. Time was running out.   As a last resort, I asked my doctor about any other drugs that could help. He mentioned a potential drug that was still in its pre-clinical trial stage. When it was approved for use in humans, I entered the Phase I clinical trial for STI571. I responded exceptionally well. Nine months into the trial, I ran a 26.2-mile marathon in Alaska! Five months later, I cycled 111 miles in Tucson, Arizona, raising funds for leukemia research.   Three years passed, and in May 2001, the FDA approved STI571 as Gleevec. Among the hundreds of thousands of lives Gleevec has saved, I am the longest-living survivor. In the decades since, I got to see my daughter grow up, attend Harvard University and Emory Medical School, and become a doctor. I’ve celebrated birthdays and wedding anniversaries and been there for every special moment, all because of a clinical trial.   The doctors gave me three years to live. It’s been nearly 30 years — and counting.   What Does This Have to Do With You?   Gleevec was the first tyrosine kinase inhibitor (TKI) cancer treatment. Now there are 80, seven approved in the last year. I am humbled and honored every day to not only be alive, but to have helped change the cancer treatment game. Being part of something bigger than myself — the clinical trial — felt so good that I decided to dedicate my life to clinical research education and patient advocacy. Because the more people know about clinical trials and how to find a clinical trial, the more lives will be saved today and in the future.   Maybe by telling you my story, you’ll be inspired to be part of something bigger than yourself, too.   How to Participate in Clinical Trials  Clinical research is different from what it once was. Back when I was in the Gleevec trial, I did everything by myself. I had to find a place to live in Houston where I stayed for three months, and then find my way back to Houston every 90 days for about three years. These days, there are patient advocates, support services, and more, all dedicated to making research participation as easy as possible.   Despite the differences, there are things that hold true. To participate in clinical trials, you need to know the benefits, do your homework, and start your research journey as soon as possible. In addition, you can enter a trial in a later phase and can withdraw from a trial without penalty.  Know the Benefits of Clinical Trials  Clinical research is essential! Every prescribed drug in your medicine cabinet has gone through a clinical trial. Clinical trials provide treatment at least equal to the current standard of care. When you’re a clinical trial patient, you not only access the newest care (often for free), but you also get the chance to contribute to the future of medicine.   This is especially true for patients of color. Many racial and ethnic minorities aren’t well-represented in clinical research, so it’s even more important for us to step up and participate. In fact, new regulations have been introduced in the industry that put requirements on patient diversity. Otherwise, tomorrow’s treatments won’t be as effective for everyone.   Do Your Homework   Your doctor may not offer clinical trials unless you ask. You need to do your own research so you can talk to your providers about trial options.  Luckily, there are an abundance of clinical trial resources out there, from advocacy groups to government websites.   You should research clinical trials even if you’re healthy or happy with your current treatment. First, many trials need healthy volunteers. Second, a clinical trial might not offer you a better outcome or prognosis, but it may help your quality of life or help educate you on your condition.   Start Now   Trials move slowly, but they go fast once they get going. I first heard about clinical research 18 months before the Gleevec trial. If I hadn’t known to ask the doctor in Houston, I would have missed out. Don’t wait. Begin your research, get on lists, and talk to your doctor now.   Turn 3 Years Into 30  My biggest takeaway on how to participate in clinical trials? Leave no stone unturned.   If you’re not trying clinical research, you haven’t tried every option. Perhaps a clinical trial won’t mean the difference between life and death for you, but it might make a difference in your quality of life. It might mean survival for someone else today, tomorrow, or in 30 years.   I invite you to be part of something bigger than yourself by exploring the resources on Clinical Trials For All to learn more about clinical trials or helping us spread awareness. 

Redefining Clinical Trial Accessibility in the Age of DCTs
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Redefining Clinical Trial Accessibility in the Age of DCTs

You want to increase clinical research participation, but access issues keep getting in the way. How can people take part in clinical trials if they don’t know about them, can’t physically reach them, or don’t have the resources to participate remotely?   Uncover solutions to the research accessibility problem in the Clincial Trials For All discussion, “Redefining Clinical Trial Accessibility in the Age of DCTs.” Featuring Lightship patient advocacy and patient experience experts Samantha Eells, Sabina Kineen, Mel Mann, and Allison Rosen and hosted by Alec McChesney, director of business development at SCORR Marketing, this discussion is a must-watch for anyone interested in making research more equitable, diverse, and widespread.   Watch the recording now to explore:  

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How much do you know about clinical trials? If the answer is very little, you aren’t alone. 41% of Americans know nothing about clinical research.   If you haven’t heard of clinical trials at all, they are how researchers test new medical treatments and drugs to make sure they are safe and work well. Trials are essential for any new medicine to become available.   If you have heard of trials before, it’s possible some of the things you’ve been told aren’t actually true. There are many clinical trial myths out there, but we’re here to help clear up the confusion.   Keep reading to learn the truth about five common research myths.   Myth: Only very sick people participate in clinical trials  Fact: Many people can take part, even healthy ones  Some people think that clinical trials are only for people with serious, life-threatening conditions and no other treatment options. It’s true that trials can provide vital hope by offering new treatments that aren’t available elsewhere. However, there are many types of research available, and you don’t need to have a severe condition to take part.   Each trial has specific rules about who can join. Researchers may need people at different stages of a condition, from early to advanced, and for both common and rare diseases. Healthy volunteers are also needed in some cases.   The bottom line: don’t rule yourself out of clinical research completely. Although not every trial will be the right fit, many could be.   Myth: Clinical trials treat participants like lab rats  Fact: Participants are respected and protected   One unfortunate myth is that clinical trials are dangerous and that people who participate are treated like test subjects or even “guinea pigs.” The truth is that participants’ rights and safety are well protected.   There are many different rules in place to ensure trials are safe. While risk levels can vary, researchers must explain these risks and work to reduce them. Steps to do this include regular checks throughout the study and ways to report any problems quickly.   Myth: You can only participate from a big city   Fact: Technology opens more ways to join trials   If you don’t live in a major city, you might think there aren’t any clinical trials near you. There is a bit of truth that many trials are often hosted at large hospitals or universities in big cities. However, advances in technology are changing this.  More trials than ever before involve local doctors or even allow you to participate from your home. These options are not available for all trials, but there are more opportunities to take part in research than you might expect, and you don’t always need to travel to a big city. And if you do need to travel, you can find studies that will cover the cost and help with planning.   Myth: Your doctor needs to refer you to a trial  Fact: You can find and join studies on your own  You may think that the only way to get into a clinical trial is through your health care provider. While talking to your doctor about research is a great place to start, it is not the only option. However, you may learn after talking to your doctor that they aren’t involved in or familiar with clinical trials. In this case, it’s important to know that it doesn’t need to be the end of your research journey.   Tools like Carebox, Antidote, or ClinicalTrials.gov allow you to search based on your health condition. You can also add filters to find trials that might be a good fit. Once you see one that could be an option, reach out to the contact for that trial to ask questions and learn more.   Depending on your condition, you may also be able to work with a patient advocate who will search for trials for you and help you throughout the process. You can find an advocate through non-profit organizations related to your illness or, in some cases, through your health care provider.   Even though you don’t need your doctor to refer you to a trial, you can still ask them about how participating might affect your current care.  Myth: Getting involved is too complicated   Fact: Resources can make the process easier   At first, it may seem like you need to be an expert to find and take part in a trial. However, the good news is that this isn’t the case. People from all backgrounds participate in research — and you can, too. There are many resources available to help make this process easier.  Our Resource Library is a great starting point. We’ve collected information from trusted sources about a wide variety of clinical research topics, and you can search based on what you want to learn.   Even if you are not interested in participating in a trial, there are still ways to get involved. Just by reading this blog and sharing what you’ve learned, you can help more people understand the truth behind clinical trials.  

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Without clinical research, there would be no new treatments, no improvements in our understanding of how diseases work, and no new options for prevention. In short, clinical research is essential.  Not all research is the same. There are two broad types: observational and investigational. They each have different goals and work in different ways, but they both rely on people like you to participate and spread the word.   Read on for an overview of observational and investigational clinical research and learn how you can get involved.   Observational Research: Observing Health Patterns  Observational research gathers data and looks for patterns. If participants have a medical condition, they will continue their usual treatment plan during an observational study. Participants in this type of research do not receive new treatments. Instead, researchers observe and record various data, depending on the goal of the study, while the participants keep their general routine the same.   Participation may involve filling out a survey, meeting with a researcher for an interview, or providing a blood or tissue sample.   Types of Observational Studies  Who Can Participate?   Each observational study will have unique requirements based on what the researchers are interested in. In many cases, both healthy volunteers and people with a specific condition are needed.   Since observational research does not require you to take a new medication or change your routine, you can often participate in multiple observational studies at one time.   Why Does Observational Research Matter?  Observational clinical research provides essential information about how diseases work and what risk factors could be. Each new study gives more information, and it takes many studies over a long period of time to clarify possible links between behaviors and diseases.   What does this mean in the real world? For one, it can help people make more informed decisions about their lifestyles to have a better chance of staying healthy. Recommendations like increasing physical activity, maintaining a balanced diet, and avoiding smoking all have their roots in observational research.   Observational studies can also identify factors outside of an individual’s control that increase the chance of developing a certain disease. This gives doctors the information they need to screen for those conditions sooner, potentially improving and saving lives.   Investigating Research: New Treatments  Whereas observational research gathers information about health, investigational research (i.e., clinical trials) puts this information into practice and tests new ways to prevent, diagnose, manage, and cure diseases.   During a clinical trial, researchers monitor participants to ensure safety and track whether the new treatment works correctly. Depending on the trial, participants may go to a specific location (a trial site) to receive treatment, or a health care professional may monitor them while they undergo treatment at home.   Clinical Trial Phases  Clinical trials have four phases, and each serves a specific purpose.   Who Can Participate?   Like observational research, different trials look for various traits among participants. Along with looking for people with the health condition the treatment will target, clinical trials may have other requirements depending on the specific goals.   The phase of the trial also changes who can participate. Phase I trials often involve healthy volunteers, as this gives the opportunity to study safety before involving those whose disease may make them more likely to have negative effects.   Why Does Investigational Research Matter?  Any advancement in medicine that you can think of owes its creation to clinical trials, from the most common over-the-counter medications to innovative treatments for serious conditions. Investigational research is essential to determine what treatments are safe and effective. Clinical trials can also provide options for those who don’t have many other treatment choices, like those with rare diseases.   Ready to Get Involved?   Whether you’re interested in taking part in observational or investigational research, you have the power to make a real difference for the future of medicine. You can ask your doctor about studies or trials that may be right for you, or you can use an online tool like Carebox, Antidote, or ClinicalTrials.gov to start your search.   And if participating directly isn’t the right choice for you now, that’s okay too! You still can do your part by sharing information and staying informed. You never know who in your network could benefit from this knowledge.  

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Have you ever wondered how new medicines make it to your local pharmacy? Or how doctors know which treatments work best? The answer is clinical trials. But with all the advances in science and technology, you might be asking: do we still need clinical trials? The short answer is yes, and here’s why.  What Are Clinical Trials?  Clinical trials are carefully designed tests for new medical treatments. They help researchers determine if a new medicine or therapy is safe and effective. Think of clinical trials as a bridge between a promising idea and actually using it to help people.   What’s the Point of a Clinical Trial?  Clinical trials aim to answer some key questions about a new treatment:  Does it work?  Does it work better (or the same as) existing treatments? Is it safe? Are there any side effects?  To answer these questions, researchers follow a strict plan; however, the specifics of how each trial works depends on the treatment being tested, the phase of research, and other factors, but typically, clinical trial participants are divided into groups. One group receives the new treatment, while another might receive the current standard treatment or a placebo (an inactive substance that looks like the real treatment). Researchers then closely monitor participants in each group to understand the treatment’s effects.  Why Can’t We Skip Clinical Trials?  We now have powerful computers, sophisticated lab tests, and the ability to study new treatments in animals. So, why aren’t these methods enough? While these preclinical studies provide valuable information before starting trials, they can’t fully predict how a treatment will behave in humans. Our bodies can react very differently than animals or cells in a test tube. Only human testing can reveal a treatment’s real-world effectiveness, its impact on daily life, and any long-term side effects.  How Do Clinical Trials Keep People Safe?  Doing anything new can be overwhelming at first, including joining a clinical trial. But there are many ways researchers work to keep participants safe:  Careful planning: Before a trial starts, researchers do many other tests to make it as safe as possible   Close watching: During the trial, doctors keep a close eye on everyone’s health  Clear information: Participants learn all about the trial before they join, including any risks The right to stop: People can leave a trial at any time if they want to  Why Your Involvement Matters  Diverse participants are important for clinical research — both healthy volunteers and those with specific health conditions, depending on the trial. This diversity helps ensure that new treatments are effective for everyone. By joining a trial, you contribute to potentially lifesaving discoveries. Even if a treatment does not work, the information gained helps researchers move closer to finding better solutions.  Clinical trials can also provide early access to promising new treatments for individuals facing limited treatment options. This can be a valuable opportunity to receive cutting-edge care.  How Can You Get Involved?  We need clinical trials, and clinical trials need participants! How can you do your part? Getting more information is a great place to start. Our Resource Library includes a variety of topics related to research, and you can search based on conditions or topics you are most interested in.   If you’re considering participating in a trial, talk to your doctor. They might know about trials that could be right for you. You can also search for trials using online tools, like ClinicalTrials.Gov.   Even if participation isn’t right for you, you can still do your part by spreading the word. Tell your friends and family about the importance of clinical trials. You never know who could benefit from this information.