Explore programs, organizations, and groups that support patients with breast cancer and their loved ones in a variety of ways.
About TOUCH
Touch, The Black Breast Cancer Alliance drives the collaborative efforts of patients, survivors, advocates, advocacy organizations, health care professionals, researchers and pharmaceutical companies to work collectively, with accountability, towards the common goal of eradicating Black Breast Cancer.
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? Participating in a clinical trial can help improve the health of people everywhere, and it’s easier than you may think. What Is Clinical Research? Clinical research is a scientific process that examines new treatment options and/or new observations about health and illness in people. Clinical research can also include observational studies. These studies look at medical data and/or biological samples, but do not test new treatments. Then, through clinical trials, researchers confirm potential benefits and identify risks of new drugs and therapies before making them available to the public. The clinical trial process happens in phases. Every step of the way, researchers must follow strict standards to prove efficacy and patient safety. Once a clinical trial demonstrates a new treatment is safe and effective, patients everywhere can begin to access its benefits. Why Are Clinical Trials Important? Clinical trials are the backbone of medical progress. 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.
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. This is primarily due to the unfamiliarity of the trial process, potential side effects of treatments, concerns about their health outcomes, and because they are often managing a significant illness or condition while navigating trial complexities that their social circle may not fully understand. Caregivers Face Mental Health Challenges, Too Caregivers of clinical research participants can also face unique mental health challenges. They may experience high levels of stress and anxiety due to the demands of caregiving, concerns about their loved one’s health, and the emotional burden of supporting someone through a clinical trial. 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. By addressing mental health proactively, both patients and caregivers are better equipped to handle the emotional and psychological demands of participating in a clinical trial, leading to more accurate and reliable study results – which ultimately deliver better treatment options to the people who need them. 14 Clinical Trial Mental Health Tips With this in mind, here are 14 ways that patients and caregivers can give their mental health a boost while navigating clinical research participation. Establish a Routine: Maintaining a consistent daily routine can provide a sense of normalcy and stability, which can help reduce anxiety and stress. This includes regular sleep, exercise, mealtimes, and scheduled relaxation or leisure activities. Stay Informed: Understanding the clinical trial process, potential side effects, and expectations can help reduce fear and anxiety. Patients should feel empowered to ask questions and seek clarification from their healthcare providers. 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. Even light exercise, such as walking, yoga, or stretching, can help alleviate anxiety and depression symptoms and improve physical health, which can be particularly beneficial during clinical trials. Nutrition and Hydration: Eating a balanced diet and staying hydrated can significantly impact mood and energy levels. Good nutrition supports brain health and overall well-being, which is important for maintaining a positive outlook and physical health during a clinical trial. Build a Support Network: Build a support network that includes healthcare providers, fellow trial participants, friends, family members, and community groups. This network can offer emotional support, practical advice, and a sense of solidarity. Set Realistic Goals and Expectations: Setting achievable personal goals can provide a sense of purpose and accomplishment. It’s also important for patients to set realistic expectations about what they can handle and to recognize their limits to avoid burnout or frustration. Practice Mindfulness and Relaxation Techniques: Techniques such as deep breathing, meditation, progressive muscle relaxation, and visualization can help reduce stress and anxiety, improve focus, and promote a sense of calm. These practices can be especially helpful for managing the emotional ups and downs that come with clinical trials. Keep a Journal: Writing down thoughts, feelings, and experiences can be therapeutic and help patients process their emotions. Journaling can also be a useful tool for tracking emotional states as well as identifying patterns and triggers of anxiety or stress. Engage in Positive Social Activities: Participating in social activities or connecting with friends and family can help reduce feelings of isolation and provide emotional support. Engaging in positive, supportive social interactions can improve mood and provide a sense of normalcy. Stay Connected with the Research Team: Maintaining open communication with the clinical trial research team can help address concerns or issues as they arise. Feeling supported and heard by the research team can alleviate stress and improve the overall trial experience. Create a Calming Environment: Having a designated, comfortable space for relaxation or mindfulness practice can help manage stress and provide a refuge during difficult times. This environment can include calming elements like soft lighting, soothing music, or aromatherapy. Connect with Support Communities: Connecting with others in similar situations can help reduce feelings of isolation and provide valuable peer support. Find Mental Health Support Tools That Work for YOU Creating a supportive environment on your own can be challenging, even with the above tips. That’s where support tools come in! 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.
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.
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.
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.
By: Heidi Green, COUCH Health Navigating the medical system as a neurodivergent person can sometimes be difficult. Many spaces and interactions aren’t as accommodating as they could be — and the same can be said of the clinical research space. However, there are ways to make trial participation less stressful. Ask For Accommodations One of the most effective things you can do to make your clinical trial experience work better for you is to ask for what you need. Here is a sample list of the kinds of accommodations that your clinical research team should be able to provide you with. Feel free to share this with them, or customize it to meet your individual needs. Examples of What to Ask For More Neurodiverse Research Starts with You Keeping research teams accountable and ensuring that gatekeeping and implicit bias don’t exclude patients who should be included is essential to an improved research landscape. While such barriers have certainly posed a challenge to participation in the past, now is the time to change that.