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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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14 Ways to Support Your Mental Health During a Clinical Trial
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14 Ways to Support Your Mental Health During a Clinical Trial

By: Meredith Boley, Bezyl For people struggling with their mental health, support can be life changing. The same is true for people who participate in clinical trials!  The clinical trial environment, which can sometimes lack adequate psychological support and resources, often creates or compounds mental health struggles. As a result, both patients and caregivers may feel isolated, overwhelmed, and unsupported.  Unpacking the Patient Experience  Clinical research participants can experience heightened levels of stress, anxiety, uncertainty, and even depression. 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Caregivers may also experience feelings of isolation, fatigue, and burnout, especially if they lack a support network or resources to help them manage their caregiving responsibilities.  Why It Matters  Patient and caregiver mental health during clinical trials is important because it directly impacts both groups’ overall well-being, which can affect a patient’s ability to stick to the trial protocol and to manage treatment-related side effects. When mental health is compromised, patients may experience reduced motivation, increased fatigue, and a decline in physical health, impacting trial outcomes and data reliability.   Furthermore, strong mental health support can enhance retention rates, reduce dropout rates, and help ensure the trial’s success. 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Knowledge about the trial can help patients feel more in control of their situation.  Access Professional Mental Health Support: Engaging with a therapist, counselor, or psychologist who specializes in working with clinical trial participants can provide tailored emotional support and coping strategies. Professional support is invaluable for managing anxiety, depression, or other mental health concerns that may arise.  Practice Self-Care: Self-care activities, such as reading, journaling, meditating, or engaging in hobbies, can help manage stress and improve overall well-being. Taking time for oneself is crucial for maintaining mental and emotional balance during the demands of a clinical trial.  Physical Activity and Exercise: Regular physical activity is proven to boost mood, reduce stress, and improve overall mental health. 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Bezyl is an app that offers a personalized platform for mental health tools. Designed to support clinical trial participants and caregivers – as well as other people who’ve experienced trauma – the app includes features like:   Mental well-being is crucial for navigating the challenges of a clinical trial, maintaining resilience, and improving overall outcomes. Don’t hesitate to seek support, whether through Bezyl, healthcare providers, or your personal network.  More About Bezyl: Clinical Trials For All partner Bezyl was founded with a mission to revolutionize mental health support by leveraging the power of connection and community. Our vision is to create a world where mental health support is accessible, personalized, and integrated into everyday life. Our app, available on Google Play and the Apple Store, offers a comprehensive suite of tools designed to support mental well-being. From connecting with family and friends through our Spheres of Support feature to tracking moods and accessing a library of resources, Bezyl is here to help you every step of the way. Visit Bezyl.com. 

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By: Scott Stout, MedVector Think of the biggest medical breakthroughs of the modern era. Anything you can name, from the end of smallpox to the recent development of COVID-19 vaccines, owes its existence to clinical research.   Clinical research uncovers new or improved treatments for both rare and common conditions, and clinical trials confirm their efficacy and safety in humans. Both clinical research and clinical trials are essential for moving medicine forward, saving lives, and increasing quality of life for you, your loved ones, and your community.   By understanding what clinical research is, why it matters, and how to break down barriers to participation, you can become part of this essential process of discovery. And why should you consider it? 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They take discoveries from the lab into practice, bringing the latest developments in medicine and technology to communities like yours. Without clinical trials, medicine simply couldn’t evolve, and, more importantly, treatments that save and improve lives wouldn’t be able to reach the people who need them.  How You Benefit From Clinical Trials   The benefits of clinical trials for science as a whole are clear, but what about the benefits for people who participate in these trials?   Clinical trial participants benefit in many ways. You:   Barriers to Clinical Trial Accessibility   If clinical trials are so essential, why have 91% of Americans never participated in one?  Some barriers to trial access and participation include:   But what if the doctors you already know and trust could offer clinical trials as a care option? Even considering the barriers to clinical research, studies suggest 75% of patients would participate in a clinical trial if it were recommended by their doctor. Knowing this, an obvious conclusion to patient-centric participation in clinical research is … our doctors.   However, not all doctors want to get involved in research, and the ones that attempt to do so typically stop. Underenrollment, paperwork, and strict compliance guidelines create additional work, requiring doctors to dedicate a significant portion of their resources to keep running trials, let alone be profitable.   Why Don’t Doctors Just Refer Their Patients to Clinical Trials? In a perfect world, doctors would refer their patients into clinical trials, but even after addressing the awareness problems, several factors prevent this:   Clinical Trials as a Care Option  We know that patients want to hear about clinical trials from their trusted doctors, but current avenues to provide access are not ideal: either become an investigator or refer a patient (customer) to another doctor. So how do we bridge this gap and align the interests of patients, clinical trial sites, and treating physicians?   A decentralized clinical trial (DCT) gives patients access to clinical trials from alternative locations, such as their home or local clinic, but in an industry that values “caution” over “innovation,” the process of putting DCTs into practice has been painfully slow.  At the peak of the COVID-19 pandemic, telemedicine, a decentralization tool in the telehealth family, became common practice and has continued to be widely used. Telehealth is the delivery of health care services or monitoring by video, messaging, or other options that don’t require a physical visit to a doctor’s office. A unique benefit for clinical research is that telehealth enables a patient to be in two places at once: physically at their doctor’s office, while virtually at a clinical trial site. This concept allows patients to access advanced medicines from a variety of locations including, not only treating physician’s offices, but also local labs or pharmacies.  Even more importantly, by enabling treating physicians to “host” clinical trial appointments from their local practice, it reduces the referral concerns of patient leakage, lost revenue, and control of care. Under this model, patients have increased access to research while their doctors become part of the referral, continuing to be the primary caregiver for the patient.  Get Involved in Clinical Research  If you’re a patient interested in moving the needle toward clinical research as a care option, you can start by talking to your doctor. Ask them if they’re familiar with clinical trials and if they’re aware of the new technologies bringing them to local communities like yours. Even if they aren’t currently involved in research, this question could spark your doctor’s natural curiosity and pave the way for future access to new care options, which is good for everyone!   Our website also has a variety of resources for you to explore, including tools to search for trials near you. As clinical research continues to evolve and become more accessible, you can help be part of the future of medicine by getting involved. 

Tips for Searching for Clinical Trials as a Caregiver
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Tips for Searching for Clinical Trials as a Caregiver

If you are a caregiver, you aren’t alone; according to the Caregiver Action Network, over 65 million people in the U.S. (about 29% of the population) provide care for a chronically ill, disabled, or elderly family member or friend. The role caregivers play is different for everyone, whether it involves helping with a few tasks or full-time, live-in care. Across this spectrum, it’s clear that caregiving is essential for our communities and deserves recognition and support.   Caregivers help their loved ones in many ways, but one that may not come to mind at first is finding clinical trials. Enrolling the person you are caring for in a clinical trial can help them find new ways to manage their health, while also benefiting others with the same condition. If you’re interested in learning more about how clinical trials work and your role in finding a trial as a caregiver, the information in this article can help you get started.   What You Should Know About Clinical Trials  Before we explore more details about finding clinical trials as a caregiver, we should first discuss what clinical trials are.  A clinical trial is the process of testing a new treatment option, such as a medication or device. Trials happen in different phases, starting with smaller groups and progressing to larger ones. Throughout every step of the process, researchers follow strict standards to make sure they collect accurate data and keep participants safe. If the trial shows the new treatment is effective, it can be approved to become available to more people.   What does this mean for your loved one? Clinical trials often provide access to treatments that are not available anywhere else, giving them a new option to manage their condition. In addition to the personal benefits, taking part in a trial is also a valuable gift to others with the same condition. It gives hope for new treatment options that wouldn’t be possible without research.   How to Find a Clinical Trial Once you’ve decided that you’re interested in a clinical trial for someone close to you, the next step is exploring trials that could be a good fit. The process can seem overwhelming at first, but the good news is that there are many resources that can guide your journey and support you along the way.   Your loved one’s doctor is a great starting point for discussing clinical trials. Although not all doctors are involved in clinical trials, they will be able to answer some of your questions about the process and how it could fit with any current treatment(s). In some cases, they could recommend a trial that they are involved in or familiar with.   Even if your loved one’s doctor is not involved in trials, there are still many ways to find options. Sites like Carebox, Antidote, and ClinicalTrials.gov are great resources for searching for trials. You can look based on a condition and see key details about the trials within these tools.   From Searching to Finding the Right Fit  During this process, there are many elements to consider when deciding whether a trial is a good fit for the person in your care.   Each trial has different rules for who can participate. This may include how far along the disease is, whether your loved one has or does not have certain symptoms, other conditions, age, and a variety of other factors. Be sure to have their medical history available as you search. If you have any questions about whether a trial could be a good fit, reach out to the contact for that trial. They can talk through requirements with you and give you more details about the kind of participants the trial is looking for.   You should also consider the impact participation may have on you as a caregiver. Is the trial nearby? Will you need to travel to take your care recipient to appointments? Are there options to participate from home? This can help you plan to make sure participating is manageable not only for your loved one, but also for you. Many organizations in the clinical research community are working to improve access. The trial organizers may be able to point you in the direction of resources to help make participation easier, such as patient advocacy networks or support groups for caregivers.  Answers to Your Clinical Trial Questions Throughout the process of finding trials for someone in your care, communication is key. If you have questions, be sure to speak up. Researchers understand the key role participants play, and they should support you in finding the answers you need.   Our Resource Library is also a valuable tool for finding more information about clinical trials. Whether you are actively searching for trials for your loved one or are just starting to look into clinical research, you can make a life-changing impact by learning more and spreading the word.