History

Together with the 59,000 women who chose to participate in the Black Women’s Health Study in 1995, we continue working to add the voices and experiences of Black women to research on health-related topics. 2019 marked the 400th anniversary of the arrival of the first enslaved Africans to the British colonies in North America. In recognition of this history, the BWHS web page The Enduring Legacy of 1619 provides a brief selection of resources that may be of interest. The list is not comprehensive, nor is it an endorsement of any website or organization; it is a starting point for exploration.

The BWHS gathers information on many conditions that affect Black women — breast cancer, lupus, premature birth, hypertension, colon cancer, diabetes, uterine fibroids — the list is long. The BWHS is a “follow-up” study, following the 59,000 women who enrolled in 1995 over time. When the participants entered the study, they provided 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 and on any illnesses they develop.

The BWHS has produced important information. We’ve summarized some research results in our 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:

• Why does breast cancer occur more commonly among young Black women than among young white women?
• Does exercise protect against the occurrence of breast cancer in Black women?
• Does diet influence the occurrence of breast cancer in Black women?  If so, what nutrients or foods?
• Why does lupus occur more commonly in Black women?
• Why does premature birth occur more commonly among Black babies?
• Do experiences of racism affect the occurrence of various illnesses in Black women?
• What behaviors help to keep Black women healthy?

Before seeking National Institutes of Health (NIH) funding for the BWHS, we showed that the BWHS 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 the 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 the feasibility studies, members of the Black Nurses’ Association, and friends and relatives of respondents. The 59,000 women who returned completed questionnaires are the members of the BWHS.

The BWHS celebrated its 25th year anniversary in 2020 with a series of webinars attended virtually by thousands of participants. Grants from the National Institutes of Heath are for 5 years. We are currently funded through 2027, and will continue to apply for re-funding every 5 years. 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 needs to be learned and on whether enough participants continue to complete the questionnaires to produce valid results. 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 different story. Lupus, for example, 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 was around 200.  That was enough to start studying lupus, but not enough for answers to many questions. Even for common illnesses, new questions arise that require collecting further information. Because many important and serious illnesses are rare, and because new questions arise about common illnesses, some follow-up studies, such as the Nurses’ Health Study of white women, are now well beyond their 30th year. The BWHS will continue for as long as NIH thinks the study is worthwhile enough to provide funding for the work, and as long as most BWHS members continue to participate and update their health information every few years.

We design a new health questionnaire every 2 to 3 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. Valid 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 supervisors and research assistants who:

1. Record receipt—questionnaires are recorded as received within 24 hours;
2. Remove the last page—the last page is removed so that identifying information is not connected with the data; new address and phone information is updated in our mailing list for future mailings;
3. Edit—each questionnaire is checked for questions and comments and to make sure that all responses can be “seen” by the scanner;
4. Scan—each questionnaire is sent through a scanner that captures the responses in a computer file;
5. Test—the responses in our computer file are examined to make sure that we have accurately recorded all that you have reported;
6. Code—responses that you have written in, such as medications, are “coded” into categories;
7. Compile—all responses are compiled into a de-identified dataset for analysis.

The entire process, from receipt of the first questionnaires to having the data ready for analysis, takes about 2 years. 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, we remove identifying information and names from the records, and then we provide the records to the investigators, who gather relevant information about the illness. We also work hard to locate women who have moved; if the postal service forwarding address system is not able to give us accurate new addresses, 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.

An important part of all health studies like the BWHS is to determine exactly what illnesses occur among the participants. This may involve review of medical records for women who give consent.  The medical record information is used to confirm and further describe reported diseases, particularly to classify different types of diseases because different types might have different causes. For example, there are two major types of stroke, which have different causes. There are also different cancer subtypes, which is why we review cancer registry data for information on subtypes. As always, all information is kept strictly confidential, is identified by ID number only, and is 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.