Found in Translation
Librarians at Tufts School of Medicine have created an online health resource that is helping Asian immigrants in Boston's bustling Chinatown neighborhood better understand what ails them.
Luisa Fertitta wishes she knew how to say "self breast exam" in Chinese. When your employer is Tufts-New England Medical Center, a hospital set squarely in one of the country's most populous Asian immigrant communities, not knowing Cantonese or Mandarin can fill the day with awkward pauses. An ob-gyn nurse practitioner with a hectic schedule, Fertitta sees at least 10 non-English-speaking patients a week, many with little or no history of health care. Anxious to root out the misunderstandings that can flourish in the language and culture gap between provider and patient, she and her colleagues rely heavily on the hospital's staff of interpreters. But she considers SPIRAL—an online resource that offers health information in multiple languages—the extra ace up her sleeve.
"These patients are often nervous," says Fertitta. "They need a little time to take in what you've had to say. Like anyone, if they've been diagnosed with something unpleasant, they need time to process. Once they're home, they'll think of even more questions to ask. SPIRAL has the potential to help everyone in this situation."
SPIRAL, short for Selected Patient Information Resources in Asian Languages, is a free, publicly accessible online resource that offers health information in six Asian languages: Chinese, Cambodian, Hmong, Korean, Laotian, Thai and Vietnamese. Conceived in 2000 by staff at Tufts School of Medicine's Hirsh Health Sciences Library and the South Cove Community Health Center in Boston, the Website is an extensive collection of documents on a broad range of health care topics, from hot-button issues such as domestic abuse, sexual assault and mental disorders to illnesses such as cancer, diabetes and HIV. The site also provides an exact English translation of each document, so clinicians know what they're handing out to patients.
Fertitta says her patients find it deeply comforting to have health information in their own language. She helps them navigate through the Website and prints out any document they request, no questions asked. "They're so happy there's something for them. They can sit in front of the monitor and choose what they want from the menu. It's empowering, and it feels personalized."
In the five years since its debut, SPIRAL has attracted widespread attention in the United States and abroad, receiving traffic from Canada, Europe, the Middle East, Asia and Australia. SPIRAL's staff fields inquiries from as far away as Romania, and the resource has even been written up in the gourmet food magazine Chinese Cookery. The highest praise, however, may be from fellow librarians. In 2005, the National Library of Medicine recognized SPIRAL as one of the most outstanding health information outreach projects in New England.
LaVertu and Ho are working together to expand SPIRAL.
More surprising than SPIRAL's popularity is its lack of competition, especially as the medical community has become increasingly vocal about the need for printed materials in languages other than English and Spanish. While single-language resources exist in abundance, SPIRAL remains one of only a handful of online resources to offer translations of material in multiple Asian languages.
But even for patients who only speak one tongue, SPIRAL can play an important role, according to Fertitta. The resource, she explains, is evidence that they are not alone.
"Domestic violence is not a topic easily discussed in the Asian community. But when I pull down the dropdown menu, patients see that this is material that's been translated into Chinese, Korean, Vietnamese, Cambodian… It shows them that other people have the same problem. I always give them the option of taking home any information they want for anyone in their family."
SPIRAL is the brainchild of Cora Ho, deputy director of the Hirsh Health Sciences Library and Elizabeth Eaton, the library's former director. In 2000, Ho reached out to the South Cove Community Health Center, a federally-funded clinic that serves Boston's Asian immigrant population, with the goal of training the center's clinical staff in using the resource-rich Medline Plus and other online health databases created by the National Library of Medicine.
A year into the project, feedback from South Cove convinced Ho to shift her focus. Clinicians found the training useful, but were especially excited when they could locate online materials in Mandarin or Cantonese, the Chinese dialect most spoken by their patients. After discovering that there was no centralized clearinghouse on the Web for health information in multiple Asian languages, Ho and Amy LaVertu, a reference librarian and webmaster, set out to build one. Today, SPIRAL is richest in Chinese and Vietnamese information, but the women have plans to expand the information available in Cambodian, Hmong, Korean, Laotian, Thai and eventually to add Japanese and Tagalog, national language of the Philippines.
According to Ho, the challenge is to find reliable bilingual information in both an Asian language and English. While Ho concentrates on securing funding for the project, LaVertu scours the Web for useful information. In the process, she unearths lots of valuable "gray literature," online documents buried in government databases that don't readily appear on search engines.
"I'm like a sleuth," says LaVertu, who can allot only about 10 percent of her busy day to the site. "I have to find out who has information on the Web that is authoritative. We organize SPIRAL by topic and by language, so that people don't have to do 10,000 Google searches to find something on pancreatic cancer in Chinese. They can look here first."
On the Horizon
In a few months, Ho and LaVertu plan to apply for a National Library of Medicine grant, which they hope will give them the means to expand their work on SPIRAL. The team's proposal is ambitious and involves giving the site a design facelift, adding new content and functionality and increasing the number of languages. An immediate goal is to add Japanese, an exhaustive undertaking that will require LaVertu to scour a sea of online material to find reliable health information written in the language.
Ho and LaVertu are also excited about experimenting with new ways of delivering content. Both women believe that if words are effective, video might be even better.
"We want to add more topics, review our translations, add diagrams, images and video. If we can find multimedia without an audio track, then people can watch the video while we provide the translation," says Ho.
No matter the medium, Ho and LaVertu intend to stick to SPIRAL's original objective: to find a way to educate and comfort the sick in their own language.
"The patient always asks, 'what are they going to do to me?'" Ho explains. "If we can show them, it helps take away their anxiety."
SPIRAL, a free online resource for patient information in Asian languages, can be found at http://spiral.tufts.edu
Profile written by Claire Vail
Claire Vail is a Sr. Web Content Specialist at Tufts School of Medicine.
Photos by University Photographer Melody Ko
This story originally ran on Nov. 13, 2006.