Research Studies

Equality in Breast Cancer Care: Frequently Asked Questions

Who is taking part in this study?
What does participation involve?
How did you get my name?
Why are you interviewing me? Why can’t you pick someone else?
How many people are you interviewing?
How long is this study running?
What kind of questions will be asked?
How will the information be used?
Are my responses confidential?
Will participants be compensated for their time?
How long will the interview take?
I received a letter in the mail asking me to participate. How can I get in touch with you?
I did not receive a letter in the mail, but I am interested in participating.

Who is taking part in this study?
Study participants involve a diverse group of women who have been diagnosed with breast cancer and who live in Northern California. Women from varying racial and ethnic backgrounds will be particularly important to this study.

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What does participation involve?
Women who choose to participate in this important study will be asked to:

• Take part in a one-time, in-person focus group with up to 7 other women who have previously been diagnosed with breast cancer. The focus group will take place here at NCCC.

     OR

• Take part in a one-time, in-person interview, scheduled at a time and location of their convenience.

That’s it!

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How did you get my name?
In California, people diagnosed with cancer are identified through the California Cancer Registry, or the “CCR.” Because cancer is considered a “reportable disease,” state law requires that doctors, hospitals, and other facilities that diagnose and treat cancer patients report to the CCR each new cancer diagnosis. The CCR requires, and we went through, a rigorous human subjects’ protection committee process to ensure that potential research participants’ rights and confidentiality are protected.

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Why are you interviewing me? Why can’t you pick someone else?
Your unique experience will help to shape an overall understanding of women’s varied experiences, particularly in the Bay Area. Once we have selected a person who is eligible for our project, it is very important for us to attempt to speak with that person. Otherwise, we cannot guarantee that the people we interview will accurately represent the various communities from which we are recruiting individuals. This means your specific information is very important.

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How many people are you interviewing?
Our goal is to interview approximately 1,300 people by the end of the project in June 2010.

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How long is this study running?
The entire study will run for 4 years. 

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What kind of questions will be asked?
We will be asking questions primarily about your background, your treatment for breast cancer, your communication with your doctors, any discrimination or challenges you may have faced in getting treatment, your lifestyle following treatment—such as how your breast cancer diagnosis may have affected your daily activities—as well as any discrimination or challenges you may have experienced in other areas of your life. We may also ask your opinion about how certain questions are phrased or how you feel about answering certain questions.

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How will the information be used?
It will be combined with similar information from all the other study participants. The combined information will be used to improve our understanding about how different women may go through the experience of being diagnosed and treated for breast cancer differently. Your name will never appear on the questionnaire or in any report. It will not be released to anyone. All information from participants will be combined as statistical totals only.

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Are my responses confidential?
All information collected in this study will be used for our research only and will be kept in the strictest confidence. To protect your privacy, you will be assigned a study number only. Thus, your name will not be associated with your responses, nor will it appear in any reports. The participants in the focus group will use first names only and will sign a confidentiality pledge prior to participation.

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Will participants be compensated for their time?
Your participation is voluntary and you may not benefit directly from participating. However, by being selected to participate, you are representing many other people like yourself all across the Bay Area, and no one can be selected to take your place. The information you provide will be very important in helping us identify specific details regarding the different ways women may go through the experience of being diagnosed and treated for breast cancer. This information will ultimately direct initiatives that will help improve how cancer treatment is given in various populations, and to help ensure that all women, regardless of race, language, income, or any other factors have an equal opportunity for treatment. We will also send a check as a token of our appreciation once you complete the interview.

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How long will the interview take?
The interview will vary in length depending upon how much you have to say and the phase of the study you were selected to participate in, but should range from 45 minutes to 2 hours. Participants usually find this experience to be very rewarding, and the time should pass by quickly.

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I received a letter in the mail asking me to participate. How can I get in touch with you?
If we have sent you a letter, YOUR participation is important!  You will be helping to answer some important scientific questions that may help us to understand why women who are diagnosed and treated for breast cancer may go through the experience differently. Please contact us using one of the three options listed below:

• Call us directly at 1-866-204-8830 to schedule an interview.
• Email us at lallen@nccc.org with your name and number and one of our trained interviewers will call you back to set up an interview.
• Fill out this Research Participant Information Sheet form and email it back to us by clicking “Submit by Email” on the form, or print it out and send it to us by mail or fax:

I did not receive a letter in the mail, but I am interested in participating.
Unfortunately, we are only including selected participants at this time, but we appreciate your interest. Click here if you are interested in volunteering with our research and education programs. 

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