Outreach through Oncopedia

    Through Oncopedia, health care professionals worldwide collaborate and learn from each other.

    The mission of St. Jude Children’s Research Hospital extends far beyond the borders of the United States. An interactive Web site known as Oncopedia helps health care providers in the world’s most remote regions access St. Jude knowledge and research with the click of a computer mouse.

    In a modern, online twist on encyclopedias, health care professionals can submit patient cases and discuss them through Oncopedia, which is devoted solely to pediatric hematology and oncology. An expert panel reviews all content submitted to the site. These experts also describe how they would handle cases, engage in online discussions with participants and respond to queries.

    “Oncopedia has two important dimensions,” says Raul Ribeiro, MD, St. Jude International Outreach director. “First, it creates a space for health care providers to interact and discuss specific pediatric hematology and oncology issues. Secondly, it provides a forum for pediatric hematologists and oncologists to describe their most interesting cases and share them with peers around the world.”

    Oncopedia is an outgrowth of www.cure4kids.org, the hospital’s highly successful Web-based educational resource for health care professionals who treat kids with cancer and other catastrophic diseases. For six years, Cure4Kids has been offering courses and seminars and hosting live meetings. The site’s 16,000 users have downloaded more than 2 million educational items. These users encouraged Cure4Kids to enhance the interactive aspects even more. And Oncopedia was born.

    “We thought if a few hundred people participated in Oncopedia, it would be useful,” says Yuri Quintana, PhD, director of education and informatics in International Outreach. “Thus far, more than 3,000 people have visited the Oncopedia site, so it’s exceeded our expectations.”

    Pediatric oncology affects a much smaller population than adult oncology. “To have 3,000 people across the world who are treating kids and participating in online discussions is quite a high number,” Quintana says.

    Discussions and cases come from around the globe. The resulting networking opportunities offer several benefits to professionals in the field.

    “A lot of these cases don’t get published because they’re in parts of the world where people don’t have access to the published literature, or they have language challenges,” Quintana says. “Medical journals sometimes don’t want to publish a case that’s too rare until there’s more data, but nonetheless, that case needs attention.”

    Physicians who treat the eye cancer retinoblastoma have greatly benefited from Oncopedia. Several retinoblastoma cases and discussions are present on the site. New features, especially the addition of videos, also offer educational resources to doctors at St. Jude partner sites in Central America. As the service helps clinicians provide more lifesaving treatments, Oncopedia is destined to expand to serve their needs.

    “These retinoblastoma programs are treating many children,” Quintana says. “Hopefully, that success will also occur with other diseases as we have more and more content available.”

    To learn more about Oncopedia or Cure4Kids, visit www.cure4kids.org.

    Reprinted from Promise Winter 2009

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