Cancer patients are using online support communities more than ever before. These sites offer both emotional and informational support, and empower patients by enabling them to talk with other patients who are facing similar issues. According to a new study, online support communities for cancers with a high survival rate contain a greater amount of emotional support than do online communities for cancers with a low survival rate [1]. Researchers at the University of Michigan Health System and VA Ann Arbor Healthcare System also found that online support communities for cancers with a low survival rate contained more informational support than did communities for cancers with a high survival rate.

The new study, presented last month at the 2008 annual meeting of the North American Primary Care Research Group [2], evaluated the differences in emotional and informational social support content in online communities for cancers with low and high survival rates.

The researchers analyzed over 3,500 messages from 587 individuals in eight online support communities located within Yahoo!Groups and the Association of Cancer Online Resources (ACOR) websites for four different types of cancer with low or high five-year survival rates. Across all communities, there was a greater amount of emotional support than informational support.

High survival rate communities contained a greater proportion of emotional support than low survival rate communities (65% vs. 55%). In contrast, low survival rate communities contained a greater proportion of informational support than high survival rate communities (33% vs. 25%).

Participants in the study were members of support communities for four different types of cancer: lung cancer, melanoma, pancreatic cancer and thyroid cancer. They participated in eight different online communities and were all reviewed under the same time period.

According to the primary author of the study, Lorraine Buis, Ph.D. [3]:

When primary care providers refer individuals to online communities for support, they should be aware that there might be differing amounts of support based on the survival rate of a particular cancer.

According to the National Cancer Institute’s Surveillance Epidemiology and End Results (SEER) Cancer Statistics Review, which reports the most recent cancer incidence, mortality, survival, prevalence and lifetime risk statistics, from 1975 to 2005 cancer patients with thyroid cancer and melanoma of the skin had high survival rates (96.6% and 91.2% respectively) while lung cancer and pancreatic cancer had low survival rates (12.1% and 5.1% respectively) [4].

In addition to helping patients, online support communities help family and friends cope with the struggles that cancer presents. This is the first study to assess the influence of cancer patient survival rates on social support content in online communities for cancer.

A number of patient social networks are listed in the Highlight HEALTH Web Directory.

References

1. Buis et al. Relationship between cancer survival rate and social support within online communities for cancer. 2008 Annual Meeting of the North American Primary Care Research Group, Rio Grande, Puerto Rico.
2. 2008 Annual Meeting of the North American Primary Care Research Group (NAPCRG) Program. 2008 Nov 15 — 18.
3. Cancer survival rates impact type of Web communities used by patients. University of Michigan Health System press release. 2008 Nov 18.
4. SEER Cancer Statistics Review, 1975-2005, Age-adjusted SEER Incidence and U.S. Death Rates and 5-year Relative Survival Rates, National Cancer Institute. Bethesda, MD, based on November 2007 SEER data submission, posted to the SEER web site, 2008.

Twitter is a micro-blogging service that allows users to send and receive updates or “tweets”, which are short text-based posts. In contrast to a conventional blog, which combines text, images and links to other websites, a micro-blog post is typically restricted to 140 characters. Twitter users can “follow” others by visiting their profile page and clicking the “follow” button. Following someone simply means you will receive their Twitter updates. Interestingly, Twitter is also frequently being used as an instant messaging service, with lengthy real-time exchanges between users.

You might think that very little can be said when you’re restricted to 140 words, but just the opposite is true. You have to be succinct and get straight to the point. This has been a criticism of Twitter since it was launched in October 2006. Call it what you want. Soundbites … media snacking … everyone is busy today and consuming small bits of information is how we’re keep up with the world’s never-ending data stream.

Although there’s been a great deal of speculation in the blogosphere about the death of Twitter, it remains the most widely used micro-blogging service. I’ve mentioned previously that Twitter is a useful communication tool. The social media service allows you to connect with other people who share your interests. I’ve found a great many people interested in health and medicine on Twitter, and have been actively using it since early this year.

Mark Hawker, a health care informatician in the U.K., recently published a list of the Top 30 Health Tweeple or Twitter users. I’m honored to be one of the 30 Twitter users on the list. The top 30 health tweeple include physicians, nurses, medical librarians, medicine and health 2.0 educators and advocates, and healthcare entrepreneurs from around the world. Mark compiled the list of health tweeple you should follow “based on the quality of their contributions and their overall influence in the field.”

However, it was soon realized that many health tweeple were missing from the list. Thus, Mark’s follow-up post, The Forgotten Health Tweeple rounds the list up to 50. Although many of the top 50 health tweeple I already follow, Mark’s list introduced me to others I had not yet discovered.

Even though it’s subjective, I think Mark’s top 50 list accurately identifies people that are actively “tweeting” and discussing health, health 2.0 and medicine 2.0 online. This niche social network within a social network — the health community on Twitter — posts useful and informative content and frequently engages one another, exchanging information and resources. If you use Twitter and you’re interested in health, I highly recommend you follow the top 50 health tweeple.

Interestingly, consumers are also looking for companies on social media websites. Indeed, a recent study found that 93% of social media users believe a company should have a presence in social media [1]. This means that brands are being recognized and sought after in a social media environment. I mention this because I maintain two separate Twitter accounts, one for the Highlight HEALTH Network, which provides a way for Twitter users to stay up-to-date with new articles and resources posted on the Highlight HEALTH websites, and a second for personal use (my personal account made the top 30 list). Feel free to follow both.

• Follow the Highlight HEALTH Network
• Follow Walter Jessen

A word of caution: in my experience, it’s difficult to keep up with the flow of information when you follow too many people. I try very hard to only follow people that are engaging and share my interests. Even when you’re media snacking, you can eat too much!

Here’s a tip: easily keep up with tweets directed at you by locating the RSS link at the bottom of the @Replies page and subscribing to it in your feed reader. You can also convert the feed to email using a service such as Feed My Inbox and you’ll always know when someone sends you a tweet, even if you’re not currently using Twitter.

References

1. Cone Finds that Americans Expect Companies to Have a Presence in Social Media. Cone Inc. press release. 2008 Sep 25.

The Internet is rapidly transforming healthcare. Not only is it creating new connections for the access, sharing and exchange of information, it is cultivating a new level of knowledge among patients, enabling them to have input into decisions about their healthcare. Indeed, 80% of adult Americans say they have researched at least one specific health topic, either information on exercise and fitness, or information about immunizations or vaccines, online at some point [1]. A 2003 WebMD study found that consumers spent more time researching health information online than any other media source [2].

Unfortunately, with all the reliable health information online, an equal or greater amount of misinformation also exists. An article in the Economist last year discussed the exponential increase in user-generated content, encouraged by sites such as YouTube, Facebook and Wikipedia, and its affect on healthcare [3]. The article concluded by quoting a professor at Harvard Medical School:

Many doctors, he says, “don’t get the wisdom of crowds.” But he thinks the combined knowledge of a crowd of his patients would be far greater than his own.

However, the trouble with “The Wisdom of Crowds” or “Crowdsourcing” is that a group of people connected by a network doesn’t necessarily mean they will work together as or more effectively than in traditional organizations.

… Quite simply, not all crowds are wise.

In his book “The Wisdom of Crowds”, James Surowiecki wrote the following [4]:

The smartest groups are made up of people with diverse perspectives who are able to stay independent of each other. Independence doesn’t imply rationality or impartiality. You can be biased and irrational, but as long as you’re independent, you won’t make the group any dumber.

A study published in the Journal of the American Medical Association examined “The Wisdom of Crowds” by evaluating YouTube as a source of information on immunization [5]. University of Toronto researchers searched YouTube using the keywords “vaccination” and “immunization”, and measured users interaction with the videos using view counts and viewer reviews indicated by the star-rating system. Scientists evaluated 153 videos:

• 73 (48%) of the videos were positive, meaning the central message of the video supported immunization (e.g. described the benefits and safety of immunizing, described immunization as a social good, or encouraged people to receive immunizations).
• 49 (32%) of the videos were negative, meaning the central message of the video portrayed immunization negatively (e.g. emphasized the risk of immunization, advocated against immunizing, promoted distrust in vaccine science, made allegations of conspiracy or collusion between supporters of vaccination and manufacturers).
• 31 (20%) of the videos were ambiguous, meaning the video contained either a debate or was ambivalent.

Although almost half the videos were positive and only 20% were negative, compared with positive videos, negative videos were more likely to receive a rating, had a higher mean star rating and more views.

The videos were then rated for scientific accuracy based on the 2006 Canadian Immunization Guide, which has recommendations similar to those from the American Centers for Disease Control and Prevention. None of the positive videos contradicted the Guide. However, nearly half of the negative videos (22 of 49; 45%) carried messages that did contradict the Guide. These included messages that general childhood immunization can cause autism and that scentific research supports the link between thimerosal and autism. However, perhaps the most striking data from the study was that, among the positive videos, public service announcements received the lowest mean ratings and the fewest views.

The authors comment at the end of the study that:

The video ratings and view counts suggest the presence of a community of YouTube users critical of immunization.

And that community of YouTube users is growing rapidly. According to a December 2007 report by the Pew Internet & American Life Project, the typical share of internet users going to video sites was nearly twice as large as it was in December 2006 [6].

With the pervasiveness of blogs and RSS on the Internet today, content has become a commodity. Indeed, “information overload” tends to be everywhere. With too much information and not enough time, capturing an audience’s attention is paramount. Everyone has heard the cliché: “Content is King”. In the age of Web 2.0 and YouTube, packaging, not content, has clearly become King. This is the message public health authorities and others trying to communicate accurate health information need to pay attention to: it’s not just what you say, it’s how it’s presented.

Are you a Twitter user? Tweet this!

References

1. Fox S and Fallows D. Internet Health Resources: Health searches and email have become more commonplace, but there is room for improvement in searches and overall Internet access. Pew Internet & American Life Project. 2003 July 16.
2. Research Reveals That Internet Has Become Primary Means by Which Consumers Access Health Information. WebMD press release. 2003 Feb 10.
3. Health 2.0. The Economist. 2007 Sep 6.
4. Suroweicki J. (2004). The Wisdom of Crowds: Why the Many Are Smarter Than the Few and How Collective Wisdom Shapes Business, Economies, Societies and Nations. Boston: Little, Brown, Boston.
5. Keelan et al. YouTube as a source of information on immunization: a content analysis. JAMA. 2007 Dec 5;298(21):2482-4. DOI: 10.1001/jama.298.21.2482
   View abstract
6. Rainie L. Increased Use of Video-sharing Sites. Pew Internet & American Life Project. 2008 Jan 9.