Thirty-one days of the year are devoted to pink ribbons and mammograms, but at Breastcancer.org, awareness is a round-the-clock effort. Since its launch in 1999, the site has become a trusted resource for patients, family and friends. It's where a woman can go to find answers--not just an explanation of her pathology report, but also information on how to pay for treatment; when surgical scars will fade; and how to manage if chemo makes her too sick to play with her kids.

The site stays up-to-date on the latest research and treatment options, but it also goes beyond the medical jargon and explains how breast cancer really hits home. With everything from statistics to discussion boards, it's a lot to manage, but staff has the tools and drive to make it work.

On the Patient's Level

"There's always something being worked on," says Michele Zwiebel, managing editor, Breastcancer.org. The four-person staff posts about 12-15 articles per month and frequently sifts through archives to remove outdated material. The site also streams breaking news from MedPage Today, an accredited medical news service. Information feeds onto the site, then Breastcancer.org staff makes it digestible, breaking down facts and figures to help patients know how the new findings affect them, if at all. "[We] really relate it back to the people and their understanding of their own personal situations," Zwiebel says.

Comprehension is the group's main goal. Originally, the Web site read much like a book; in fact, it was an online companion to Living Beyond Breast Cancer, by founder Marisa Weiss, MD. Sections were long and lacked many of the search options users became accustomed to seeing online. In 2007, staff overhauled the Web site. They purchased a content management system (CMS) from SDL Tridion, then consulted with patients to determine the best way to organize and compartmentalize information. A beta test confirmed usability. "We really watched the way people searched, what their emotional state is when they get here and how much guidance they need," Zwiebel says.

When it comes to patients, it takes one to know one. Staff wanted Breastcancer.org to be an authority on the everyday issues associated with breast cancer treatment and survival. Close relationships with patients and doctors gave them a glimpse of the "daily trip-ups" an average person wouldn't anticipate, Zwiebel said. "Our visitors have really given us such a lens into their lives and needs as they navigate life with breast cancer," she explained. "It helps us provide advice and connect them with others in their situation."

Staff tailored the site to meet those needs. Among the new features, banners flash throughout the site, drawing visitors' attention to information they may not have considered. The callouts link to articles about nutrition, fatigue and other subjects that affect all patients, but aren't typically thought of during an initial information search. "We're trying to just dangle in front of people information that will be helpful to them all the way through [treatment], no matter where they are," Zwiebel said.

Staff also monitor discussion boards and chat rooms. The community pages rake in visitors, many of whom are looking for the real deal on treatment options. Participants tend to be knowledgeable, so staff doesn't have to worry too much about content, according to Zwiebel, but discussions can get heated when emotions are involved. "People have very distinct opinions about what should be done [for treatment]," she notes.

Mounting Ambitions

Despite the oodles of content and positive feedback from patients, Breastcancer.org has room for improvement, and staff members have ideas in mind. The site periodically hosts "Ask-the-Expert" online conferences, but staff would like to modernize the presentation. "It is a bit primitive," Zwiebel said.

The conferences currently consist of a streaming instant messenger chat between two physicians, with questions submitted by participants prior to or during the conference. The organization would like to introduce podcasting and is contemplating a Webinar style conference for the site. Digital media could be used to present animated illustrations of surgical procedures and other treatment options, so patients get a better idea of what to expect.

The organization is also researching how the U.S.-based Hispanic community uses the Internet so breast cancer information can be available to Spanish-speaking individuals.

Eventually, Zwiebel hopes Breastcancer.org will become a "personal hub" for breast cancer patients. Personal health records could be incorporated into the site, along with a calendaring application where friends could sign up to, say, cook for the family when a mother undergoes chemo. But all that technology requires funding, perhaps the biggest challenge of running a non-profit. "We have so many things we understand could make the site better, more useful and more personalized for folks," Zwiebel said. "We just need the funds to do it."

She's proud to have support from patients, but that makes her all the more determined to deliver on their requests. Building awareness and boosting the budget aren't easy, but Zwiebel's confident Breastcancer.org has the staff to do it. "There's a very palpable passion you can feel from everyone that works here," she said. "It's an amazing organization."

Cheryl McEvoy is an assistant editor with ADVANCE newsmagazines, which provides health care information to medical specialties as well as this patient resource center.