At For the Breast of Us, we believe increasing representation of women of color in clinical trials is one sure way to help close the health disparity gap. That’s why we’ve partnered with our friends at the Fred Hutch Office of Community Engagement to answer your questions about clinical trials and give you a clear understanding of how they work and how your participation helps not only you, but every woman affected by breast cancer.

We’ve heard firsthand from many women of color about a lack of access or knowledge of clinical trials. We’re working towards a world where women never have to say, “I didn’t know I had options.” The Fred Hutch Office of Community Engagement shares how you can find clinical trials on your own and what things you should consider on your search.

• What should I do if my doctor doesn’t offer me the option to participate in a clinical trial?

Depending on your condition, clinical trials should be a topic of conversation to discuss all your viable options. You should take the opportunity to talk to your medical provider, a patient advocate, or a clinical trials service to research and look up any existing clinical trials for your medical condition, if this is a route you wish to explore. If you are interested in participating or gathering information about any clinical trials and the doctor does not offer one to you, the first thing to do is do NOT assume automatically that you don’t qualify, or that you don’t count. That’s not the case, and your health and well-being are just as important.

During any office visit, it is well within your right to inquire about any trials regarding your specific cancer or disease.  You may follow up with questions such as:

I was interested in knowing more about any clinical trials for my condition?

• Are there any existing, new, or ongoing trials that for my current condition that would benefit me, or you would recommend me for?

• What are the risks and benefits associated with participating in clinical trials? Are clinical trials a possible option for my specific situation?

If one is not suggested or offered to you, you can inquire yourself. Asking your provider questions and relating concerns holds them accountable, as well as gives you ownership of your medical situation. Your time is your time with the provider. Part of this is making sure they address all your concerns, which includes those of clinical trials and studies. You may want to tell your doctor immediately that you have numerous questions you would like to ask before the end of the appointment, in order to make time for those questions. Sometimes it happens that not all doctors and hospitals may participate in clinical trials, which may be another reason it is not offered.

Keep in mind, your specific condition or other factors may not always meet the criteria for certain trials (example: age group, weight, certain stage of disease, current treatment you may already be on, etc.). Criteria such as these helps keep patients safe and give researchers the most accurate results.

If you do not qualify for the trial based on specific medical criteria or demographic criteria that excludes you, then this could mean that the trial or study may not be beneficial to your condition, or that the provider deems that it may not help as much or may cause further risk. Either way, the process starts with a conversation.

• How can people get involved in the process of a clinical trial?

There are a few ways to get involved in trials, if you are interested or want more information:

1. One way is to do so through online research. You can go to ClinicalTrials.gov. You can also go to other sites, such as NIH Website. Here, you can break down your search of any trials based on search criteria of your disease/condition, your country, region, etc. Use the “find a study” tool on the website to search for both studies that are recruiting. Other useful sites are the CDC website, or the American Cancer Society.

2. Most providers, local, regional, and other clinics may showcase a clinical trial web page under “clinical trials,” “patient resources,” or “research studies” (or something similar) tab/link right on their own website. For example, I [Dante]see my providers at the Polyclinic Madison, here in Seattle. They have a “patient resources” tab on their page, which I was able to click, and it directed me to a “clinical research” tab. From there, I was able to look at the work they are doing and at any studies or trials that may be of interest to me. The next stop was asking my provider about it.

3. You can always contact your health insurance provider to see if they may cover clinical trials costs. Now this one may take some work, due to wait times on hold, or getting to the right department, but you can check with your insurance provider if the current plan you are on covers what costs of participating in a clinical trial. You can also see if they offer information on clinical trials outside of just quoting benefits.

4. Consult with your healthcare provider. Usually at your first, last, next, or any office visit in between, you can inquire about trials available to you. This is information that your provider, nurse, or a patient navigator can provide to you. If you are curious, don’t hesitate to ask your provider about clinical trials. Even if they don’t have any recommendations for you at that moment, they would research your health information, and give you the information that you are seeking (they should). Keep in mind, that based on your condition and what stage you are in, that not all trials may be the best for you, and providers would know this, as well as the risk. Always do your research on the types of clinical trials that you are interested in (refer to Q1)

For people who may not feel comfortable doing an online search, we encourage contacting the National Cancer Institute Cancer Information Service Line 1-800-4-CANCER where a Clinical Trials Specialist clinical trial search (for free) based on the information you share with them.

To learn more about clinical trials, visit breastofus.com/clinical-trials.

*All clinical trial related content was obtained from the National Cancer Institute at www.cancer.gov

About The Fred Hutch Office of Community Engagement

The Office of Community Outreach & Engagement (OCOE) is housed within the Fred Hutch/University of Washington Cancer Consortium. The OCOE is dedicated to cancer prevention and to reduce/eliminate barriers to cancer care and support. Our four community health educators and advocates: Dillon van Rensberg, Liszet Bigelow, Danté Morehead, and Craig Dee (Diné), are focused on connecting with partners in public health, Federally Qualified Health Centers (FQHC’s), community-based organizations, communities, and researchers to address cancer-health disparities and inequities here in Western Washington. The OCOE brings together years of health disparities research, experience, and leadership in addressing cancer prevention and education.