The document discusses the motivations and challenges of ePatients who create videos about their experiences living with chronic illnesses like multiple sclerosis and diabetes on YouTube. It profiles four ePatients - Vern Beachy, Lauren Parrott, Kerri Sparkling, and Bill Woods - and their YouTube channels documenting life with their conditions. The ePatients are motivated to help others feel less alone and share their experiences and mistakes so others can learn. However, they also face challenges like not being believed since they are not doctors and issues around privacy and medical advice given in their videos.

1. Motivations and Challenges of
ePatients in YouTube
Luis Fernandez-Luque (luis.luque@norut.no) -Norut, Tromsø, Norway
Vern R Beachy - e-Patient YouTuber - vbeachy
Bill Woods - e-Patient YouTuber - 1HappyDiabetic
Lauren Parrott - e-Patient YouTuber - laurenvparrott
Kerri Sparkling e-Patient YouTuber - sixuntilme
Medicine 2.0 Maastricht NL – 29, 30 November 2010

2. Background
Health Information is moving to the Web 2.0 (blogs,
YouTube)
– For example, 20.000+ videos from US hospitals

3. Background
Many of the videos are created by ePatients

4. ePatients in YouTube- Motivations and
Challenges
4 e-Patients sharing their experience living with Multiple
Sclerosis and Diabetes

5. Vern R Beachy (Vbeachy)
http://www.youtube.com/watch?v=CuOVDAm6tlE

6. Lauren Parrott (laurenvparrott)
http://www.youtube.com/watch?v=Atq0LP_mfYE
Old video Medicine 2.0 (2008): http://www.youtube.com/watch?v=Fb8_k-VIg4k

7. Kerri Sparkling (sixuntilme)
http://www.youtube.com/watch?v=lc9hA4gmlhw

8. Bill Woods (1HappyDiabetic)
http://www.youtube.com/watch?v=jsP9nZXIpME

9. Challenges
• It hurts when people don’t believe me – laurenvparrott
• some people told me… You are not a doctor, you shouldn’t be making
videos.. I make very clear in all my videos I am only talking about my life –
laurenvparrott
• I am not a doctor, I am just telling my story – vbeachy
• I have been solicited by companies promoting herbal supplements… -
1happydiabetic
• One of the challenges is privacy… I am sharing with the entire world
-1happydiabetes

10. Motivations
• Finding others make you feel less alone, and feeling less alone has an
huge impact in how you manage your chronic illness. –SixUntilMe
• I have gotten so much feedback from my videos… a lot of people have told
me they have helped – vbeachy
• I was looking for information on a video format and it wasn’t there –
1HappyDiabetic
• To share my experience… so others can learn from my mistakes –
1HappyDiabetes

11. Join our conversation
• Our YouTube e-Patients:
– http://www.youtube.com/user/1happydiabetic
– http://www.youtube.com/user/laurenvparrott
– http://www.youtube.com/user/sixuntilme
– http://www.youtube.com/user/vbeachy
• Slideshare:
– http://www.slideshare.net/luis.luque
• Twitter:
– @luisluque, @1happydiabetic, @laurenvparrott, @sixuntilme