History

In the early 1990’s we knew that black women were more likely to develop many health problems, and to die of them, than white women. We also knew that most of the previous studies of women’s health had included only small numbers of black women or none at all. We felt that improving the health of black women required more knowledge of the causes of these health problems and also more knowledge about how women stayed healthy. More knowledge meant more research. We decided that we would do our best to take the lead in carrying out that research.

The Study Design
What Will the BWHS Tell Us?
Starting the BWHS
How Long Will the BWHS Last?
What Happens to Your Questionnaire?
Classification of Illness

THE STUDY DESIGN

We wanted to design a study that would gather information on many conditions that affect black women—breast cancer, lupus, premature birth, hypertension, colon cancer, diabetes, uterine fibroids —the list was long. To study many diseases at the same time, the best possible design is a “follow-up” study.  A follow-up study enrolls participants and then follows them over time. When the participants enter the study, they provide information on factors that might influence health and disease, such as contraceptive use, cigarette smoking, and diet.  At regular intervals, participants provide updated information on these factors (because the factors may change over time), and also on any illnesses they develop.

WHAT WILL THE BWHS TELL US?  

The BWHS has produced important information. We’ve summarized some research results in past Newsletters, and a full list of research publications, with descriptions, is available on this website. Here are some of the questions we are investigating within the BWHS:  

STARTING THE BWHS

Before seeking National Institutes of Health (NIH) funding for the study, we set out to show that our idea was feasible. We decided that a follow-up design was best and developed a questionnaire. The questionnaire asked about age, education, contraceptive use, smoking, and other factors that might be related to health and disease. The National Education Association allowed us to mail questionnaires to a sample of black female teachers; the federal government delivered questionnaires through their personnel offices to a sample of black female employees; and Essence magazine gave us access to a sample of subscribers after we had paid a fee.  The completed questionnaires that were returned to us showed clearly that enough black women were willing to provide useful and accurate health information to make a study feasible. After submitting a detailed grant proposal to NIH, review of the proposal, and revision, we received funding. The entire process, from developing the idea and conducting the studies to show that our study would work, to receiving funding for the BWHS, took about four years. With the funding secured, in 1995 we sent health questionnaires to subscribers to Essence magazine, women who had participated in our feasibility studies, members of the Black Nurses’ Association, and friends and relatives of respondents. The 59,000 women who returned completed questionnaires became the members of the BWHS. 

HOW LONG WILL THE BWHS LAST?

The BWHS celebrated its 10 year anniversary in 2005. The first NIH grant for the BWHS was for 5 years. We will continue to apply for re-funding every 5 years and are currently funded through 2014. Ongoing funding will enable the study to contribute much more to the understanding of black women's health.

How long the BWHS should last depends on what we want to learn. For example, if we want to learn about hypertension, a common illness, 5 years is enough to answer some important questions. Over the first 5 years of the BWHS, thousands of participants developed this condition, enough to be able to assess whether a wide range of factors are related to it. But rare illnesses are a very different story. Take lupus, for example. This illness occurs much more commonly among black women than among other ethnic groups, and yet it is still a rare illness even among black women. In the first 5 years of the BWHS, about 100 women developed lupus. After 10 years, that number is more than 200. That’s enough to start studying lupus, but not enough for final answers. And even for common illnesses, new questions arise that require collecting further information from participants. Because many quite important and serious illnesses are rare, and because new questions arise about common illnesses, some follow-up studies of white women, such as the Nurses’ Health Study, are now in their 30^th year. The BWHS will continue for as long as the participants and NIH think the study is worthwhile and as long as we can obtain funding.

WHAT HAPPENS TO YOUR QUESTIONNAIRE

We design a new health questionnaire every 2 years. Questionnaires contain some of the same questions each time (to get updated information), and some new questions about additional factors. The first mailing of the questionnaire occurs in the spring. Our study results, and the continuation of the study, depend upon collecting responses from as many of the original 59,000 participants as possible, so we mail the questionnaire multiple times to those who have not yet returned it. When questionnaires are received, they are handled by a staff of 3 supervisors and a team of research assistants who:

Record receipt—questionnaires are recorded as received within 24 hours;

Remove the last page—the last page is removed so that identifying information is not connected with the data;

Edit—each questionnaire is checked for questions and comments and to make sure that all responses are marked darkly enough to be “seen” by the scanner;

Scan—each questionnaire is sent through a scanner that records the responses and adds them to a computer file of all BWHS responses;

Test—the responses in our data file are examined to make sure that we have accurately recorded all that you have reported;

Code—responses that you have written in, such as medications, are reviewed and coded.

The entire process, from receipt of the first questionnaires to having the data ready for analysis, takes about 2 years. It is only then that the research team can carry out the statistical analyses that will provide information on the causes and preventives of disease. Our staff also works on several other tasks. Some participants are contacted to ask for consent to review their medical records. When consent is given, we send for the records to gather relevant information about the illness. We also work hard to locate women who have moved; some BWHS participants move quite often and if the postal service forwarding address system is not able to give us accurate new addresses, then we try to locate the participant using information such as email address, phone number, and friend or relative contact information that participants provide to us. We learn about deaths from friends, relatives, the postal service, and the National Death Index.

In addition, we conduct special studies within the BWHS. In the late 1990's, 400 women participated in a diet validation study that assessed how well a series of questions on usual diet reflected what women were actually eating. In 2001/02, over 100 BWHS participants participated in a validation study of physical activity carried out by Dr. Lucile Adams-Campbell in Washington, D.C.  More than 25,000 BWHS participants have provided cheek cell samples for biological studies.

CLASSIFICATION OF ILLNESS

An important part of all health follow-up studies like the BWHS is to determine exactly what illnesses occur among the participants. This requires review of medical records. The medical record information is used to confirm and further describe reported diseases, particularly to classify different types of particular diseases because different types might have different causes. We also review cancer registry data. We ask women with particular illnesses for written consent to review their records. As always, the information is kept strictly confidential and used only in statistical analyses. Participants' information is protected by a Certificate of Confidentiality from the U.S. Department of Health and Human Services. Medical record review will continue to be an ongoing part of the BWHS.