University of California, San Francisco embraces web 2.0 for health information

Jun 16 2008

YouTube and The University of California, San Francisco (UCSF) today launched a comprehensive Internet video channel dedicated to the improved understanding of incurable neurodegenerative brain diseases.

The UCSF Memory and Aging Center YouTube channel can be found at https://www.youtube.com/UCSFMemoryandAging. The multimedia offering represents the latest step by one of the world's leading neuroscience research teams to engage the public and the medical community in an aggressive search for the causes and cures of debilitating brain conditions known as "dementias."

The YouTube channel is part of an overall Internet campaign that will help UCSF's researchers and clinicians reach out to a global audience in the fight against these devastating diseases. With this novel use of technology, the UCSF Memory and Aging Center stands at the forefront of a vitally important, and potentially groundbreaking, new paradigm for addressing serious public health issues, patient advocacy, and medical research and fundraising.

"Science flourishes in an environment that fosters communication, and one of the great things about the YouTube channel is that it gives us a rapid mechanism for communicating with physicians and caregivers who suspect that their patients or loved ones may suffer from one of these illnesses," says Bruce Miller, MD, director of the UCSF Memory and Aging Center. "All of the dementias -- including Alzheimer's disease, Frontotemporal dementia (FTD), Creutzfeldt-Jakob disease (CJD), Huntington's disease and others -- share common features. Our goal is to increase awareness of the earliest signs of these diseases, so they can be accurately diagnosed, and patients can get into clinical trials sooner. We believe that early intervention with novel therapies will be key to stalling and halting these diseases."

The YouTube collaboration was inspired by the "Fight for Mike," an initiative by Silicon Valley leaders to save the life of former Apple/Netscape marketing ace Mike Homer, who was diagnosed last spring with CJD and is being treated at UCSF. Homer's close friends, Silicon Valley investor, Ron Conway, and Intuit Chairman William V. Campbell lead the initiative.

"Mike Homer is one of the great people who helped build Silicon Valley," says Ron Conway. "His extraordinary energy, creativity and passion helped drive the success of major companies and start-ups. The Fight for Mike is intended to honor his spirit and drive the medical research underway at UCSF to cure CJD and related diseases. We're hoping the YouTube channel will support this effort."

The YouTube channel features UCSF's renowned clinical-researchers discussing disease characteristics -- which are often subtle and not well known, even among members of the medical community. Personal stories of patients and family members are also featured, together with practical advice and coping strategies from health care professionals.

To further support the initiative, UCSF's Internet campaign is comprised of these other elements:

• UCSF Memory and Aging Center CJD Web site - First in a series of comprehensive informational sites offering disease-specific informational resources on dementias, the CJD site features physician-researchers and nurses discussing CJD, caregiver information and testimonials, advice for physicians, and resources for basic and translational scientists. Videos on CJD and related topics are featured as well.
• "Defeat Dementia-Know More Now" Widget - The widget facilitates viral information sharing and an immediate call-to-action for patients, families, friends, caregivers and health professionals. It links to educational videos; clinical trial information; donation opportunities; the YouTube channel, and Facebook group. It is promoted to advocacy groups, and caregiver and professional healthcare organizations for emailing and posting on blogs, Web sites and ad networks.
• "Defeat Dementia" Facebook Group - To galvanize the younger generation in the fight against degenerative brain disease, UCSF has created a "Defeat Dementia" Facebook group providing a place to interact, share information, and find or offer support.
• Veodia Partnership - Veodia's live, real time video broadcasting technology will be used to expand outreach nationally and reinforce relationships with caregivers, patients and healthcare professionals. Important announcements and caregiver conferences featuring UCSF's leading clinicians, physicians and nurses will facilitate remote participation.