Gene Genie #32 – Googling the Genie

May 25, 2008 | by

Welcome to the 32nd edition of Gene Genie, a blog carnival devoted to genes and genetic conditions. This edition includes some excellent articles on genes and gene-related diseases, genetics, genomics and personalized genetics.

Google Health launched publicly this week and to recognize the event, the last section of the carnival is devoted to articles specifically about the service. Google, financial backer of 23andMe, also funds the Personal Genome Project, which plans to unlock the secrets of common diseases by decoding the DNA of 100,000 people in the world’s biggest gene sequencing project [1]. With the vast number of genetic data points collected for each genome sequenced, a digital system for the movement and storage of personal health information is critical for the widespread use of individualized healthcare. Google’s entrance into the online personal health records market may thus help to accelerate the era of personalized medicine.

With these thoughts in mind, let’s get to this month’s edition of the Genie.

Health Highlights – May 6th, 2008

May 6, 2008 | by

Health Highlights is a biweekly summary of particularly interesting articles from credible sources of health and medical information that we follow & read. For a complete list of recommeded sources, see our links page.

Health Highlights

Diabetes 2.0

March 12, 2008 | by

This article was written by Matthew Krajewski.

March 25, 2008 will mark the American Diabetes Associations’ 20th annual American Diabetes Alert Day. As implied by “alert,” the day serves as a call to action for those individuals at risk to take the Association’s Diabetes Risk Test, and make an appointment with a healthcare provider if necessary.

Since 54 million Americans have pre-diabetes, it is crucial for those at risk to take heed from the American Diabetes Association’s Diabetes Alert Day. Those at risk include overweight individuals, those not leading an active lifestyle (not taking enough exercise), and those with a family history of diabetes. Furthermore, the American Diabetes Association recommends that people aged 45 and older be screened every three years (those at higher risk should seek screenings more regularly).

Since diabetes has no cure, affects nearly 20 million Americans (of these 6 million don’t know they have diabetes), and is the fifth leading cause of death by disease, the fear of testing positive for diabetes and the seemingly insurmountable lifestyle changes and health management requirements accompanying the disease can be quite daunting. Fortunately, the Web provides a wealth of information, and the interaction developments offered by Web 2.0 can make the quality of life of those living with diabetes a little better. With 5 — 10% of all Web searches being health related, the need for people to not only get health information, but also make it easy to access and interact with, is vital and reflects the evolving needs of Web users that Web 2.0 seeks to meet effectively.

searching-for-diabetes.jpgSites like RightHealth.com, Healia.com, Revolution Health or WebMD are excellent starting points to quickly get acquainted with the information surrounding the topic diabetes. Healia provides multi-dimensional filtered search results, whereas RightHealth algorithmically orders information from across the web and presents it in an easy-to-understand content format. Revolution Health, Web MD and RightHealth all blend the lines of information and community to offer multiple dimensions to getting information on diabetes.

From RightHealth, I learned a bulk of the facts I already mentioned in this posting, as well as what diabetes actually is: a life-long disease characterized by high blood sugar levels. The causes of diabetes can include too little insulin (the hormone the pancreas produces to manage blood sugar), a resistance to insulin, or a combination of both. Beyond this basic information, RightHealth also features easy-to-understand jump-offs to other sites, like Trusted Sources (organizations connected with diabetes that provide detailed information about the disease), and an Explore section that gives a snapshot of the language and topics used to understand diabetes.

So Health 2.0 makes getting or understanding information about dense topics easier, but that’s just the beginning. A new site, Mamaherb.com bills itself as a way ” … to find natural treatments that can really help,” by fostering a community where users share stories about what alternative treatment options have worked for them. For diabetes sufferers that want to explore homeopathic remedies, Mamaherb is an invaluable resource. A search on “diabetes” showed that people had moderate success with such natural remedies as bilberry juice, buckwheat tea, broccoli extract and buchu leaves. Where else could you get this type of deep information easily?

The key to better health for diabetics is better control over the disease by carefully monitoring their blood sugar levels. This might sound simple, but it can be surprisingly complex. Fortunately, there is Sugarstats.com, which provides an interface to, “track, monitor, and share [your] blood sugar levels and other key statistics to help manage your diabetes online.” With timelines and graphs, it becomes easier and more accessible for a diabetic to manage the trends in their blood sugar levels and target ways to reduce blood sugar levels.

The touchstone of Web 2.0 is the user. While there are the mega sites like Facebook and MySpace where one could find other diabetics to share stories and advice, there are also even more targeted community sites which serve specifically the health or diabetic communities. iMedix.com is a place where users can rate medical articles that have helped them (like Digg meets Health) and chat with other people that share similar interests. When I searched iMedix for “diabetes,” I was told that there were three people online who I could chat with and around 500 offline that also share an interest and want to talk about diabetes. Another valuable resource was icyou.com, where users post health videos, which was a great way to cut through non-health-related videos you might find on mega sites like YouTube.com. But perhaps the most valuable resource was tudiabetes.com, which is a rich and vibrant community site committed to those afflicted with or touched by diabetes.

With such resources available today with the advent of Health 2.0, and by extension Diabetes 2.0, living life with diabetes just got a little bit easier.

About the author: Matthew Krajewski is a writer for The Kosmix RightHealth Blog, which uses information obtained through the RightHealth search engine to provide insightful posts about health-related news and issues.

Additional Health 2.0, Patient Social Networks and Diabetes resources are listed in the Highlight HEALTH Web Directory.

Presenting Highlight HEALTH 2.0

February 5, 2008 | by

I’ve written previously about my desire to explore the use of web 2.0 in health and medicine. Two months ago, I created a page on the Highlight HEALTH Web Directory to index articles that discuss web 2.0 in health, fitness and medicine.

… Then I realized my mistake.

No blog. No RSS. Why was I writing articles on web 2.0 and not using the tools?

I alluded to this issue when I introduced The Highlight HEALTH Network, an aggregation of feeds from Highlight HEALTH and the Highlight HEALTH Web Directory.

Accordingly, I’m pleased to present Highlight HEALTH 2.0, a blog focused on following web 2.0 in health and medicine. My intention is to develop an article resource discussing social networks and health, and to catalog a series of reviews written by myself and guest writers, describing various health-focused social networks and what they have to offer. Since I believe health-focused social networks can affect patients the same as real-life social networks, offering the information as an additional resource to a web directory of quality health-related websites seemed appropriate.

YouTube as a Source of Health Misinformation

February 3, 2008 | by

social network
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.

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.