Patient stories on the internet: ‘people power’ or ‘pester power’?

Social media, including YouTube, Facebook, and Twitter, have democratized the production of health information, making it possible for anyone with an internet connection and a computer to post their own health stories online. Much of this information comes in the form of experiences of illness and treatments, particularly about chronic conditions.

Our new research, published in the peer-reviewed journal ‘Patient Education and Counseling’, looks at this growing trend of people going online to share their experiences of treatments. We looked at one specific condition- multiple sclerosis, a debilitating and often progressive neurodegenerative disease- and one controversial treatment, known as the ‘liberation procedure’. This treatment is based on a theory called CCSVI (Chronic Cerebrospinal Venous Insufficiency), which suggests that blocked veins in the neck are responsible for MS symptoms and progression.

Although there is little ‘conventional’ medical evidence to support the effectiveness of this procedure for improving symptoms or reducing progression, tens of thousands of people around the world have gone, often at great expense, to have this procedure done. Hundreds of these people have posted YouTube videos about their experiences, and we looked at what makes these videos so compelling, given that many have over 80000 views. We watched 100 of these videos to figure out what’s going on.

Nearly all the videos (97%) adopted a positive stance towards the procedure and the theory behind it, describing that the theory makes sense, and that it should be adopted more widely. There were three key aspects to the videos- they provide visual evidence of treatment effectiveness (people demonstrate they are better with before and after videos of their disabilities), they describe concerns that neurologists and Big Pharma do not have MS patients’ best interests in mind, and they show what it’s like to live in daily life with MS.

If you’re interested in learning more, here’s the link to the paper .

What’s the take home message? Health experiences on YouTube are here, and they’re here to stay. Practitioners alike should engage with this content, should know that it’s out there and tens of thousands of patients are watching it, and that it can be very compelling. This is particularly true in a condition such as MS, where currently available treatments aren’t very effective, and where the promise of a new way of looking at the disease provides hope to those who are suffering.

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About Braden O'Neill

DPhil Candidate in Primary Care Health Sciences and Rhodes Scholar at the University of Oxford
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One Response to Patient stories on the internet: ‘people power’ or ‘pester power’?

  1. Mona Nasser says:

    Very interesting post, Braden. I read another quite interesting article on the combination of media, politics and advocacy around CCSVI and MS affected research priorities and allocation of funding for research in Canada (http://www.biomedcentral.com/1472-6939/14/6). As you mentioned on twitter, it demonstrates that it is a big issue in Canada. Considering that we increasingly encourage stakeholder engagement esp. patients and public, I guess it is very critical for research and funding organisations to better understand how the patient stories online affects people’s decision on what is their biggest uncertainty.
    When JLA did their priority setting exercise on Cleft Lip/Palate. One of the topics that became a priority was the aetiology of cleft (to the surprise of clinicians!), I mentioned to Sally that I am suspecting that media and internet might had an role on making this topic an uncertainty for the patients and their parent. Interestingly in a presentation in a dental research event, one of the people engaged in that project mentioned something similar on an advocacy and media campaign happening around that time that might have affected this decision. I do made a storify of the tweets from the latter session http://storify.com/monalisa1n/bringing-primary-and-secondary-care-oral-and-denta (although, this was a very small part of that day’s presentations…).

    P.S. Unfortunately, the link to your own paper doesn’t work or at least on my computer says it broken.

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