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In Context
1086 www.thelancet.com/neurology Vol 7 December 2008
YouTube-ing your way to neurological knowledgeSpecialist online networking forums are proliferating, but are they an eff ective way for groups with an interest in neurodegenerative diseases to disseminate information? Adrian Burton reports.
YouTube, the much-visited internet video-sharing site, is usually a place people go for fun, but could its power to attract millions of users be harnessed to increase aware-ness of neurodegenerative diseases among patients, their families, and physicians? Furthermore, could it act as a source of advice and support to caregivers or be tapped to promote early diagnosis and bring more patients into clinical trials sooner? These are some of the questions that the Memory and Aging Center at the University of California San Francisco (UCSF, San Francisco, USA) hopes will be answered in the affi rmative by its new YouTube channel. The centre is also using another social networking site, Facebook, to host its Defeat Dementia campaign.
“[Because] most families are unaware of the variety of diseases that can cause dementia and the early symptoms [of] these diseases, many people with cognitive disorders are never evaluated by a clinician. It is critical that we develop tools to support families so that their loved ones can receive proper assessments and treatments”, explains Shenly
Glenn, Media Director of the Memory and Aging Center. “Early detection is the key to fi nding cures and off ering eff ective interventions. We hope [our channel’s content] will bring people into clinics earlier, get diagnosed earlier, and participate in clinical trials earlier.” The new channel has 20 videos about various neurodegenerative diseases, with information on how they aff ect behaviour, potential therapeutic targets, and tips on caring for patients. The information is clear and easily accessible to any interested viewer.
The use of the internet as a communication strategy in medicine is, however, hardly new. The web is awash with medical information sites, many of which are focused on neurodegenerative disorders. The use of YouTube channels is not a new idea either. For example, setting the YouTube search engine parameters to “channels” and typing in the terms “surgery” or “neurosurgery” returns many channels that show surgeons doing all kinds of operations. The 2-year-old ORLive site has more than 5000 subscribers and contains some 370 videos of surgery for health professionals. Typing in “family medicine” returns the University of Wisconsin’s 11-month-old WI Family Medicine channel, which deals with a range of medical procedures, including the diagnosis of dementia. Typing in “Alzheimer’s” (although, oddly, not “Alzheimer’s disease”) returns two channels with goals that are similar
to those of the UCSF channel. The channel of the UK Alzheimer’s Society has been making videos available for over a year—some in Urdu—that range from discussions of the eff ects of the disease through to support for caregivers. The US Alzheimer’s Association also has a 1-year-old channel with 22 videos, some of which are in Spanish. However, typing in “Parkinson’s disease” returns only one channel on young-onset disease, and searching for “Creutzfeldt Jakob” or “frontotemporal dementia” returns none, although “loose” videos (ie, videos not grouped into a specifi c channel) can be found by setting the search parameters to “videos”. So, could this underexplored resource be an uncolonised realm for medical interest groups of all cultures and languages to move into?
Certainly, the web is becoming an ever more important source of medical information for the public. “Between 2005 and 2007 we saw a dramatic increase in the use of the internet for retrieving health information, and we expect that this will be even more prominent in 2009”, explains William Dutton, professor of internet studies at the Oxford Internet Institute (Oxford University, UK). “Our Oxford Internet Surveys suggest that many individuals look up medical information for their families.” YouTube and Facebook are, however, largely thought of as fun sites or for young people. Would elderly people with neurodegenerative diseases or their middle-aged children, who are perhaps not all that computer literate, even think of looking for information there? And are young audiences likely to stumble across such channels and make them known to older users? “The younger internet-use audience will only come across these applications
“YouTube provides the Alzheimer’s Society with access to a younger and more varied audience....On average, ten new users become fans each day.”
Looking up the UCSF site
Adria
n Bu
rton
For the UCSF Memory and Aging Center YouTube channel
see http://www.youtube.com/UCSFMemeoryandaging*
For the Defeat Dementia campaign see http://www.
facebook.com/group.php?gid=15060128066*
For the WI Family Medicine channel see http://www.
youtube.com/user/WIFamilyMedicine*
For the UK Alzheimer’s Society channel see http://www.
youtube.com/user/AlzheimersSociety*
For the US Alzheimer’s Association channel see http://
www.youtube.com/user/actionalz*
For the ORLive site see http://www.youtube.com/user/ORLive.
com*
In Context
www.thelancet.com/neurology Vol 7 December 2008 1087
if they specifi cally search for them, which seems unlikely unless [surfers] are already concerned about a relative or friend; and even then they will be more likely to use a search engine to fi nd information”, explains Dutton’s colleague, Ellen Helsper. “Secondly, unless the materials provided are so well made that they become the most popular clips on YouTube and people begin to share the links to them, they might [remain in the background]. The most popular videos are either copies of professional entertainment clips, come from ordinary users who do silly things, or are commercially designed viral-marketing campaigns disguised as user-generated content. I am not sure how a more serious organisation, which is interested in neurological diseases, would fi nd its way into this arena and become a popular clip on YouTube or Facebook.”
However, there is a demand for information in this format. The UK Alzheimer’s Society channel, which is one of the longest-running channels devoted to a neurodegenerative disorder, was set up in response to a consultation with users of the society’s main website. “People with dementia [and their carers] consistently requested more multimedia content”, explains the society’s chief executive, Neil Hunt. “We now have 39 clips, and the most popular video, About My Grandfather, has so far been viewed 2459 times. The channel gets an average of 55 views a day. YouTube provides the Alzheimer’s Society with access to a younger and more varied audience. The Facebook page of the UK Alzheimer’s Society was launched in March, 2008, and now has more than 1000 fans. They are almost all women and are slightly younger than the typical users of the society’s website. On average, ten new users become fans of the Alzheimer’s Society each day.”
Despite such enthusiasm, the fi gures available on the society’s YouTube channel site show only 19 registered subscribers; the US Alzheimer’s
Association channel has just 30 subscribers. With 132 subscribers, the new UCSF channel is doing a little better but whether it can reach and infl uence its intended audience is uncertain. “Part of this exposure discussion has to address what level of exposure by [which] individuals should be considered successful”, explains Robert Hornik, professor of communication and health policy at the Annenberg School for Communication (University of Pennsylvania, Philadelphia, USA). “The [number of] channel views of subscribers viewing each video [does] not suggest that [the UCSF channel] is on the path to becoming broadly used yet. If its entire intended audience is neurological patients and providers in the catchment area of the UCSF, with the goal of promoting the centre as a source for clinical care, then one might assess it in terms of the proportion of that potential audience that regularly accesses the site or how many people who come to the centre mention learning about it from the website. However, if the intention is to reach a national or international audience and raise the level of knowledge of the broader population on the issues addressed on the site, then the criteria for successful levels of exposure will be very diff erent…. My quick look at the UCSF YouTube and general website does not lead me to think that it will have a broad infl uence unless it is linked to an aggressive and continuing site-promotion strategy.”
The UCSF Memory and Aging Center has, however, adopted an innovative strategy to entice its potential audience to log on, by providing a widget: a free electronic badge that people can embed in their own websites, enabling them to have direct access to the channel’s videos. “Our widget is an easy way for people to spread the word that our channel is out there. People can email it to their friends and with one click view our content”, says Glenn.
Although YouTube channels can disseminate medical information, there is also a danger that channels with disguised interests could spring up. Already, there are many patient-help web pages that are fi nancially backed by pharmaceutical companies, raising questions about the impartiality of the information provided. Being able to trust a channel’s information is clearly a problem. “It may be diffi cult for YouTube to adopt a code of practice in this area because they argue that the amount of material posted is so enormous they cannot vet content in advance”, explains Helsper.
Whether sites like these will be the next internet gold rush for groups that are interested in neurodegenerative diseases is unknown, but the web has already forever changed the way medical information is gathered and disseminated. “Too often, the internet is dismissed as a [non-credible] source of health and medical information”, concludes Dutton. “But in my view, it enables individuals to network in ways that provide greater social accountability within the health arena. [The internet] is overwhelmingly a positive development for the future of health-related information.”
Adrian [email protected]
YouTube might help families detect tell-tale signs of dementia
Adria
n Bu
rton
For the widget see http://memory.ucsf.edu*
*All online data correct as of Oct 8, 2008
