Why user-generated medical content works

When people think of user-generated content they often think of the media or publishing. Videos on YouTube, spoofing TV shows or films, and content responding to and expanding upon journalistic or editorial articles abound. But UGC is certainly not limited to these areas. In fact it can work best on any topic where some individuals will have developed a specific interest in or knowledge of the area.

The medical industry is one that sees a lot of UGC. A search on YouTube finds thousands of videos of people talking about their illnesses, from cancer sufferers to people with bullemia. Support groups are flourishing and people are finding that sharing experiences and content online is sometimes easier than face-to-face. Talking about your experiences to video and uploading this to YouTube for others to respond to and comment on is probably easier than discussing it in real life. The internet and social networks probably offer access to a greater number of fellow-sufferers than even a local support group might offer.

Beyond support, people can use social media and user-generated content to help understand their illnesses. The supposed danger here is that people will self-diagnose and that this may be incorrect. At the same time, you’d expect that privacy issues would prevent any meaningful and useful exchange of ideas. But in fact, user-generated medical content is a vibrant example of how the social networking and online communities can be powerful for exchanging information.

A report by Jupiter Research in 2007 showed that 20% of Americans turn to others online for information about medical issues. They are clearly not shy of seeking or giving advice, even on more personal issues. They use sites such as OrganizedWisdom, a Wiki-style community, to share information they have and get information they need.

The concern over the accuracy of this information still stands, with worries about non-medical professionals sharing information that people use to self-diagnose. But research by the British Medical Journal in 2004 found that in the online support communities it studied only 6% of content was incorrect. If this replicated across all medical content online then it would probably be among some of the more accurate user-generated content on the internet.

User-generated medical content shows that people are willing to share and are accurate when they do so. Even in a more niche and potentially risky area such as medical advice and disgnosis, the quality and usefulness of user-generated content is high.

5 Comments

  1. Kate Pryde:

    I was looking for information on a pain relieving drug yesterday, and came across the Patient UK network, which has an astonishing amount of user generated content about just this one particular medicine, in its Experience forums.

    In the US, I believe that this specific type of content may be driven by insurance issues – a person in the US who doesn’t have enough funds, or sufficient insurance, to go and visit their doctor, will instead seek the counsel of other sufferers online.

    It may yet come to a similar situation in the UK, but, over here, I suspect that the tendency of UK doctors towards arrogance and paternalism, and the limited time that even the most dedicated of doctors has to actually listen to a patient, is creating a drive towards more common use of resources such as the Patient UK forums.

    I am aware of sites dedicated to patients who have undergone specific types of operation, as well as those dedicated to sufferers of certain particular illnesses, and I am certain that the phenomenon is set to grow.

  2. FreshNetworks Blog » Blog Archive » Niche groups can benefit from online communities:

    [...] and niche experience, but as we have seen before, medical issues are often a great subject for successful online communities. People often feel more comfortable discussing often embarrassing or difficult issues online, and [...]

  3. FreshNetworks Blog » Blog Archive » Examples of online communities in healthcare:

    [...] patients, families and carers, friends and others. We’ve written before about how user-generated medical content can add value to people’s lives, and why this online space is a great place for people to be [...]

  4. Examples of online communities in healthcare « Roger Pilney’s Blog:

    [...] professionals, patients, families and carers, friends and others. We’ve written before about how user-generated medical content can add value to people’s lives, and why this online space is a great place for people to be [...]

  5. Slideshow Mechanic:

    User generated content is a hot topic all over the web, including the healthcare industry. However, as fantastic an idea as it seems, healthcare organisations have a struggle when it comes to being associated to user generated content as it may not be accurate, and is more often than not extremely subjective. The challenge is how to find that happy (compliant) balance.

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