When the first Internet cable was laid thirty years ago, those present would not likely have envisioned its impact on our lives, let alone that the Net would be used by women seeking information about menopause. Originally the domain of the military and academic communities, global expansion of Internet technology and of personal computers has transformed how health providers and consumers communicate, access, share and exchange health information. Women wishing to exercise more control over health care decisions are looking closely at the Net as a source of current, authoritative information. Use of the technology by mid life women is expected to expand in the coming decades as growing numbers of women face decisions related to lifestyle, self-care, and treatment for specific illnesses.
As a health librarian, I regularly search the Internet on a wide range of concerns such as: what is known about new drug treatments for Alzheimer’s disease or osteoporosis; self-care strategies for fibromyalgia; or resources to support women who are informal family caregivers. For me, a foray into cyberspace can be a colourful, fun and efficient way to find up-to-the minute treasures of information which, prior to Internet technology, I did not have access. Sometimes, though, I am overwhelmed by the sheer volume of available information, or frustrated at wasting my time wading through irrelevant information. I’ve also learned to be critical and watchful of the snake oil salesmen lurking there.
I share here some of my experiences and strategies for navigating cyberspace, both for well-seasoned Internet travellers as well as novices. Starting with the landscape, language and culture of the Internet, I offer some tools for getting to and evaluating information on menopause and mid life. I highlight some specific sites, online support, and trends. For women new to the Internet, I hope this will help demystify cyberspace, whet your enthusiasm and provide some useful tips for beginning your journey.
The Internet is a worldwide system linking smaller computer networks together, using a set of communication standards. What we call the World Wide Web (WWW), a subset of the Internet, is a recent evolution that allowed for the addition of graphical images and hyperlinks. Graphical interfaces, or the images you see on the Web, make it a visually exciting and user-friendly landscape.
The WWW is a unique and revolutionary communication media because it is interactive and essentially democratic. Unlike television, where we are passive recipients of images and sound, through hyperlink technology we can choose to move instantly between pieces of information, from “site” to “site” anywhere in the world. The WWW is democratic because anyone – the individual woman who wishes to share her experiences about menopause; professional organizations; self-help and consumer groups; or pharmaceutical companies – can publish information, and link to other web sites.
For example, this article has been posted here on the web site of A Friend Indeed, and will link you instantly to the other web sites mentioned. The ability to embed an E-mail address on a web site allows us to communicate directly with the site’s originator. The interactive nature of the WWW fundamentally changes our relationship with text: rather than “sequential reading”, where we begin at the start of a text and read until the end, we can make “nonlinear jumps” from one text to another.
Is The Internet Safe?
Internet culture has been dominated by men, causing some women to be wary about venturing out in territory where they may encounter pornographic Web sites, or harassment and offensive behavior in chat lines or discussion groups. See: W.H.O.A., Women Halting Online Abuse.
Since the people who use the Internet are also able to participate in its evolution, women are finding ways to shape cyberspace, to make it more “women-friendly”. Demographics will also play a role, as the gap between younger computer literate women and those entering midlife closes. The more women begin to use Internet technology, the more it will reflect issues of concern to women.
Finding the Means to Travel
Many women are unable to access Internet technology because of economic and physical barriers, or they do not have the needed skills. As more health information is provided online, equitable access to Internet technology must be addressed by government agencies and health service providers. Ideally, public libraries and resource centers, community health clinics, HMOs, and hospitals will provide clients with access to appropriate in-print and online health information on specific conditions and treatments, and on ways to maintain good health. Adaptive technology which allows people with visual and physical disabilities to use computers is being developed, as are guidelines for authoring accessible web pages.
If you don’t have your own computer:
- Internet access is becoming widely available at public libraries, resource and seniors centers where staff can assist you in locating resources (both in-print and on the Net). Librarians can be a wonderful resource (you don’t have to use computers or the Internet yourself to find what you need).
- Find an Internet buddy – a friend or younger relative glad to show off their Net savvy. Put a notice up for a volunteer buddy at the computer science department or library at a local college. Many community centers offer courses that will help you get started.
Touring the Sites
Deciding what road to take to get where you want to go is not a simple task. Methods for navigating the WWW are continually changing shape and direction as individuals and organizations attempt to bring order to a vast and varied landscape. Ironically, precisely what makes the WWW varied also makes it easy to get lost. A variety of approaches are available, depending on the kind of information you want and how much time you have.
- Online Catalogues: A basic introduction to menopause can be located by finding book titles in the online catalogues of public libraries or college and university libraries. A search of an online general interest bookstore like Amazon.com might yield a title like What your doctor may not tell you about menopause: the breakthrough book on natural progesterone, where you are able read what other women and book reviewers have to say about the book, as well as a list of other available titles on menopause. Or, you can search online directories of women’s bookstores for new titles on menopause, such as the Feminist Bookstores Index.
- Professional Organizations: The American Academy of Family Physicians provides web sites for both professionals and consumers, as do university research centers like the Department of Obstetrics and Gynecology at Columbia University and hospitals like the Mayo Clinic.
- Portable Document Format: Many organizations (e.g., the North American Menopause Society; The Hormone Foundation) now provide pamphlets, brochures and newsletters in Portable Document Format (PDF), using a software program, Adobe Reader, freely available on the Internet. (See the Adobe Website for more information.)
- Online Databases: It is possible to search databases of articles online. Many public libraries give card holders free access to databases of articles in both popular and scientific literature. If the article is not available for downloading from the database, library staff will help you locate it.
If you’re ready to delve into the scientific and medical literature, the National Library of Medicine recently made the MEDLINE database, with over 10 million references to articles in the medical and health literature, available for searching to the public at no cost.
URLs: The most direct path is a web address or URL (Universal Resource Locator). Friends, relatives and guidebooks often recommend places they’ve visited. Newspapers and journals also regularly list web resources. This initial site, or jumping off place, may be all you need. Thanks to the hyperlink, other recommended or relevant sites may be only a click away.
Search Engines: The most common method for navigating the web is via the “search engine”, a service provided through the WWW that allows a user to enter a term or a combination of terms in order to locate Web pages which match that term or concept.
Search engines usually live on web portals, or gateways by which people enter the web. A web portal is commonly provided through subscription with an Internet Service Provider (ISP) like America Online. Some like Hotbot, Excite, and Lycos are free, and owe their existence to commercial sponsorship. To compete for your attention, these services have added a variety of features, including directories of web resources, free E-mail, chat rooms, as well as the search engine itself. Some web portals, like Excite and Lycos, court health consumers with links to daily health news, descriptions of common ailments, online health groups, online shopping for health products, and even “interactive diagnosis”.
Search engines vary considerably in their indexing practices (some index only titles, some index descriptions provided by the author of the web site); in how they rank and order search results; and what sites are indexed. Even the best search engines index as little as 20 to 30 percent of the web and have been accused of ranking search results depending on commercial sponsorship or popularity of the site.
Getting There Faster – Health Gateways
Enter ‘menopause’ or ‘osteoporosis’ in a search engine and you will get a hit list of more web sites than you could visit in your lifetime. Fortunately, specialized health gateway sites, both commercial and non-profit, have emerged on the Internet, for health providers and consumers, which narrow the field by indexing only a selected subset of health sites available.
In the late 1990s, the National Library of Medicine launched the site, MEDLINEplus. This is my favorite starting point for authoritative consumer health information. Easy to navigate, MEDLINEplus is a one-stop shopping place for disease and health issues; lists of health organizations; dictionaries; health news; directories of doctors and hospitals; and searches of the medical literature compiled on the database MEDLINE. By following the links to “Menopause”, we arrive at a section on “Related Topics”, with links to “clinical trials”, “news”, “organizations”, “conditions” and “treatment”. We could explore links to general overviews on menopause and other sources of information from government and professional organizations.
Many online consumers find that health information sites do not address their emotional concerns or needs. They want to share experiences and insights with others about health, illness and the health care system. Women have always provided support to each other, informally and formally, and now have the means to do so — in privacy, at home, at a time of their choosing, and in relative anonymity. Many women feel freer to discuss their concerns about breast cancer treatments, endometriosis, premature menopause, vaginal changes, or other conditions on chat lines, bulletin boards, and online discussion groups with women who may be thousands of miles away.
Many online self help groups gather, store, and translate technical medical information into a format useful to group members. Members’ pooled knowledge is made available as archived chat sessions, online files, message threads or lists of Frequently Asked Questions. Ferguson, Tom. 25 Lessons from online support networks. Women unable to attend support groups because of physical barriers, but with access to Internet technology, are now able to do so.
Venturing into self-help cyberspace is not without pitfalls. Online chats or discussion groups can be dominated by one or a few individuals; some may be perceived as complaining sessions; rumors of unsubstantiated health remedies or treatments can spread rapidly and divert people from more fruitful help. Information from online support networks must be critically evaluated. Some health professionals are looking for ways they can participate in, or moderate these discussions in order to open up communication between consumers and care providers. They recognize that the individual woman’s personal experiences and knowledge have much to contribute to our understanding of health and disease.
Looking to the Future
Where will future voyages into health cyberspace take us? Vast amounts of information about women’s health, menopause, midlife and aging will continue to be available on the Net. We can expect more commercial sponsorship of health information, more sites where people can seek diagnoses and advice, and new, creative approaches to how information is presented and shared.
Some health providers are concerned that their patients will use the information they find in Cyberspace for self-diagnosis, or that they will be unable to differentiate between credible health information and potentially dangerous treatments. There is no substitute for face to face, quality care and well coordinated services. But the informed health consumer and “involvement in decision-making may increase the effectiveness of the treatment”.(3) It is the responsibility of both providers and consumers to develop skills for critically assessing health information and to communicate about the information they find. Perhaps one potential of the Internet lies in creating new ways for health providers and consumers to interact – online and in person to ensure that women receive quality health services and make truly informed choices. And despite the risks, for those who choose to travel, the Internet also offers the potential to be world citizens, communicating beyond borders that so often divide us unnecessarily.