Frequently Asked Questions
Many BWHS participants have called or written with questions about health or health-related resources. We have answered some questions by highlighting specific topics in the BWHS newsletter, and have sent responses to some participants, and have created a list of health resources. Here are some of the more frequently asked questions:
Is my response to the questionnaire important?
Yes, it is crucial. The accuracy of scientific studies like the BWHS depends critically on the continued participation of as many people who completed the first questionnaire as possible. If the participation rate is low, with many people opting not to complete the questionnaire, results will be in doubt.
In 1995, who was invited to participate in the BWHS?
The first questionnaire was mailed to subscribers to Essence magazine and members of several professional organizations. The 59,000 women who completed and returned that questionnaire are the BWHS.
Are there large follow-up studies of the health of black women in progress?
The BWHS is the largest study yet conducted of black women.
Can new people join the BWHS?
New people cannot join the BWHS. Because of the study design, the study is limited to the women who enrolled in 1995.
I have a friend who wants to join the BWHS. Can she participate?
Your friend can not be a participant. Only women who enrolled by completing the first BWHS questionnaire in 1995 may participate in the BWHS. The study design involves following the same women over a long period. Fortunately, the information obtained from the BWHS will be useful to African-American women whether or not they have participated in the study.
Why do you send health questionnaires every two years?
Updated information is needed on factors that can change over time, like exercise, weight, cigarette smoking and reproductive health status. The more accurate the information is, the more informative will be the results based on it. There are often new issues that arise that require new questions. We also need to learn about the occurrence of illness among participants.
How long will the BWHS continue?
The National Institutes of Health funds studies for, at most, 5 years at a time. Investigators must apply for continuations of their studies. Our proposals to continue the BWHS have been successful and funding is now provided until 2017. We will continue to apply for funding for as long as the study is viable and useful. The longest-running large follow-up study of health yet conducted is the Nurses’ Health Study, in which 95% of the participants are white. The study has published more than 400 medical research articles over the course of more than 30 years.
I filled out some of the past questionnaires, but not all. Do you want me to fill out the current questionnaire?
Yes. Please do. Even if you haven’t responded to every questionnaire, the information that you provide is very useful.
How often are health questionnaires sent to BWHS participants?
Every two years.
How will we learn of study results?
Our regular newsletters, sent to you twice a year, will continue to update you as new findings emerge. This website will be updated with the information published in the newsletters, and will provide a description of all study results and the reference you would need to locate any articles that are published using BWHS data.
How often will I receive a BWHS Newsletter?
Twice a year, once in the summer and once in the winter.
Can participants have input into the decision about what health issues will be studied?
Yes. For example, in 1995 many participants commented on the need for studies of factors related to the high rate of premature birth of black infants. A section on reproductive health was included in the 1997, 1999, 2001 and 2003 questionnaires. If you have suggestions, please let us know by emailing us, calling us, writing to us or listing your ideas in the comment section of the next questionnaire. In addition, the Participants Advisory Group was begun in 2004 to provide input and suggestions to BWHS investigators. BWHS study participants can join the group by contacting the BWHS.
If I have a medical question, can the BWHS help me?
We can help you find sources of information, but we cannot give advice on specific medical problems. Only your doctors and nurses have sufficient information to help you make decisions about care and treatment. If you are in doubt about the care you are getting, it is useful to get a second opinion.
I have been diagnosed with lupus. Recently the BWHS asked permission to obtain copies of my medical records. Why?
Medical record information is used to confirm and classify different types of diseases. As always, the information is kept strictly confidential and used only in statistical analyses.
Who can I contact if I have questions about the BWHS?
You can call our toll-free number, 1-800-786-0814, to reach study investigators and research staff, or you can email us at firstname.lastname@example.org.