Supporting Informed Health Care Decisions: The Network's Role

By Electra Kaczorowski

The National Women's Health Network was founded in 1975 to give women a greater voice in the health care system by advocating for sound policies that positively affect women’s health. Helping individual women make decisions about their health wasn’t one of the Network’s initial missions. The huge need for this service quickly became apparent, however, as women approached the Network with questions on the health issues they faced. The commitment to help women make informed decisions is now an important part of our mission statement.

In response to this need, our first Board members began gathering all the feminist health information they could find, keeping the various articles and books in cardboard boxes stored on the office floor. As time went on, we developed resource guides on topics such as the Dalkon Shield and DES to aid women who needed to learn more about them. As additional materials were constantly being developed, staff, volunteers, and interns began spending more and more time responding to women’s requests for information. The result was that, by the early 1980's, the Network had established the Women's Health Information Clearinghouse.

The Clearinghouse, which was used by both NWHN members and non-members, has been instrumental in providing women with accurate information about various health issues. As the name implies, the Clearinghouse disseminated valuable information and pointed women in the right direction as they sought answers to their general health questions. Today, the Network specializes in distributing information specifically on women’s health topics, and focuses on issues that are currently controversial and about which women are most likely to need unbiased and accurate information.

A Shifting Need
In contrast to the time when women’s health information was so scarce it could be kept on the floor of the Network’s office, women today are bombarded with different facts and theories about their health. Mainstream bookstores offer a plethora of reading options on women’s health issues, and the Internet teems with sites that cater to women seeking health information. We have come a long way since the cardboard boxes, and it is encouraging to know that women's health is taken so much more seriously than it once was.

But the advent of the Internet and the popularity of women’s health books -- coupled with persistent direct-to-consumer advertising on the part of the pharmaceutical industry -- have not eliminated women's need for support for their health care decisions. On the contrary, the Network has found that the sheer volume of information (much of which is biased or misleading) makes it very difficult for women to feel confident that they are making the right decisions for themselves. And that is what women need to feel if they are going to be actively involved in safeguarding their personal health.

To address how best to support women’s informed decision-making, the Network launched an assessment committee in June, 2005. The Clearinghouse’s original and foremost purpose had been to inform women about all aspects of their health. Changes in our culture and technology, however, created a new need for an independent, evidence-based source of health information that can dispel current myths about the most confusing and controversial aspects of women’s health. Among the changes the committee recommended were to: expand information provided on-line; make email responses a viable option for those seeking succinct answers to their women’s health queries; and renaming the Clearinghouse.

Introducing The Women’s Health Voice

In July 2006, the Network launched its new health information service, the Women’s Health Voice. The new name was chosen to reflect the fact that we speak truthfully to women about the most pressing issues in women’s health. At a time when drug companies tell women they need to take medications for menopause, women are pressured to get unnecessary hysterectomies, and anti-choice advocates decry the need for safe and effective birth control, the Women’s Health Voice provides women with necessary information and support. We are no longer a source of information on a wide range of health issues, but are rather more focused on women’s health issues, particularly those in which women currently have trouble finding accurate, unbiased information. Our most frequently asked questions are on topics such as menopause hormone therapy, contraception, osteoporosis, and hysterectomy.

Our role is not to tell women what to do, or to provide health counseling or medical advice. We are here to give women the feminist, evidence-based information they need to make their own decisions based on their personal circumstances, history, and preferences. All women’s lives and health conditions are different. We hope that the information we provide – a combination of our own fact sheets, women’s health books that the Network trusts and respects, and materials from like-minded colleagues -- help women make decisions that are right for them. We do not offer diagnoses or provider referrals, but most of the women who contact us are pleased (and often surprised) to discover the positive impact that the right information can have on their health.

The Network's Health Information Coordinator oversees and staffs the Women’s Health Voice, and also coordinates staff work by NWHN interns, primarily young women who are themselves learning about the Network’s approach to women’s health. Dispelling myths and critically looking at women’s health information is all part of the current incarnation of the women’s health movement. We are not an authoritative voice, but a reflective one.

The Network is extremely proud of its history of supporting women as they make tough health care decisions, and we are excited to continue this as women's health faces new challenges. We invite you to contact us with your questions!

Visit The Women's Health Voice

Email: healthquestions@nwhn.org

Phone: 202.628.7814 (Monday-Friday 9-5, Eastern time).

Electra Kaczorowski is a former NWHN Health Information Coordinator.