Cite as: Fernandez-Luque L, Elahi N, Grajales FJ 3rd. An analysis of personal medical information disclosed in YouTube videos created by patients with multiple sclerosis. Stud Health Technol Inform. 2009;150:292-6. https://www.ncbi.nlm.nih.gov/pubmed/19745316

1. Introduction The Study Conclusions
An Analysis of Personal Medical
Information Disclosed in YouTube Videos
Created by Patients with Multiple Sclerosis
Luis Fernandez-Luque*1 Francisco J. Grajales III2 Najeeb
Elahi3
1
Northern Research Institute (Norut), Tromso, Norway
2
eHealth Strategy Office, UBC Faculty of Medicine, Vancouver, Canada
3
Norwegian Center of Telemedicine (UNN/NST), Tromso, Norway
MIE 2009, 31 August 2009

2. Introduction The Study Conclusions
INTRODUCTION
Health Information on the Internet
Health Information on the Internet
Most Europeans use the Internet to find health information.a
Among the many Web 2.0 type services, on YouTube:
More than 174 U.S. Hospitals regularly upload health-related
videos b
More search and view hits for Cancer (178,000) than the Real
Madrid (167,000) football team on any given day
a eHealth Trends in Europe 2005-2007: A Population-Based Survey, www.jmir.org/2008/4/e42/
b http://ebennett.org/hsnl
Patient Generated Content
Patient Generated Content a
41% of ePatients read content created by other patients (blogs, comments, etc.)
5% have posted health comments on a blog
a The Social Life of Health Information, June 2009. www.pewinternet.org

3. Introduction The Study Conclusions
INTRODUCTION
Health Information on the Internet
Health Information on the Internet
Most Europeans use the Internet to find health information.a
Among the many Web 2.0 type services, on YouTube:
More than 174 U.S. Hospitals regularly upload health-related
videos b
More search and view hits for Cancer (178,000) than the Real
Madrid (167,000) football team on any given day
a eHealth Trends in Europe 2005-2007: A Population-Based Survey, www.jmir.org/2008/4/e42/
b http://ebennett.org/hsnl
Patient Generated Content
Patient Generated Content a
41% of ePatients read content created by other patients (blogs, comments, etc.)
5% have posted health comments on a blog
a The Social Life of Health Information, June 2009. www.pewinternet.org

4. Introduction The Study Conclusions
INTRODUCTION
ePatients in YouTube

5. Introduction The Study Conclusions
OBJECTIVES
Rationale
There is a paucity in the literature with regard to the characteristics of
ePatient comments in Social Media websites. We were interested in:
The type of information posted.
The privacy and security risks associated with this behavior.
The feasibility of using comments for enriching the information
about the videos (e.g. Information Retrieval)

6. Introduction The Study Conclusions
METHODS
Methods
1 Selection of YouTube users (n=27) posting videos about their
lives with Multiple Sclerosis (min 3 videos)
2 Extraction of their videos (n=769) and comments (n=7047)
3 Randomized selection of 25 videos containing 557 comments.
4 320 comments were analyzed after excluding comments in
non-health and non-english videos.

7. Introduction The Study Conclusions
RESULTS
General Classification
Others: Criticism (2,5 %) (e.g. I’m skeptical you REALLY have MS) and comments not
covered in the other categories (e.g. KABOOOOM)

8. Introduction The Study Conclusions
RESULTS
Personal Health Information
I’m supposed to start tysari in a few weeks...I’m one of the "male minority" with
ms also... I seem to be at about the same stage of the "monster" as you
Twitching is one of the most annoying symptoms that i deal with

9. Introduction The Study Conclusions
RESULTS
Personal Health Information
Publishing about others
I have been watching your videos since my daughter was diagnosed with MS on
28-12-07. She was diagnosed with an aggressive form of MS. Betaferon caused liver
problems in a very short time. She has now had 4 infusions of tysabri and now feels
she is well enough to try and go back to work. Tysabri only became available in Aust on
July 1/08. This drug has given her hope that she still has a future to look forward to as
she is 26 yrs old. Your improvement since your first dose gave us all hope.a
a We localized up to 3 other comments about the daughter’s health in YouTube and the same
nickname was used in other Social Networks (some with pictures of relatives)

10. Introduction The Study Conclusions
RESULTS
Medical Counselling & Living with MS tips
Medical Counselling
Question Im in a wheelchair is it worthwhile taking tysabri?
Answer in a word ABSOLUTELLY! it is amazing how much freedom I recovered when I
started walking
MS Tipping
... I was diagnosed with MS in 1994. I have a lot of trouble with heat same as you , and
everybody else does. Have you looked into vests with cooling packs in them? They are sold as
heat protection devices, mainly for the construction trades. They have re freezable bags that then
are put in a vest with pockets made for the bag. Not to pretty, but they will extend the temperature
range you can tolerate. Good Luck!

11. Introduction The Study Conclusions
CONCLUSION
Conclusions of our study
Most comments reflect appreciation towards authors
Many comments are a dialog (e.g. questions, request for futher
explanations and videos).
Many commenters are following the evolution of the patients (e.g.
looking foward to your 36th video about ...)
A lot of videos are about medications:
Medication is a hot/complex topic in Multiple Sclerosis
Some video-authors are patient advocates for certain drugs

12. Introduction The Study Conclusions
CONCLUSION
Privacy risks
Comments may remain published after a profile is deleted
3rd party disclosure (e.g. family or friends)
Real names are used and web aliases tend to be reused in other platforms
Data mining: health related keywords may be extracted from comments for
modelling users and videos

13. Introduction The Study Conclusions
CONCLUSION
Ethical concerns: new opportunities for ’direct to consumer’ marketing

14. Introduction The Study Conclusions
CONCLUSION
Conclusion
Patient guidelines for content access, creation and dissemination are
needed.
Government recommendations (e.g Security Issues and Recommendations for
Online Social Networks, European Network and Information Security Agency)
Adaptation of health information quality guidelines (e.g. HON) to Web 2.0
channels
Self-regulation (e.g. Patient Blogger Code of Ethics)
Further Patient Generated Content research is needed:
What are the characteristics of health consumer videos/comments? (e.g. topics,
language, quality, etc.)
Guideline for the ethical implications of mining/analyzing public sensitive
information.
Future Work
Automatic analysis of comments to improve modelling of videos
to build Recommender Systems for Health Education 1
1 MyHealthEducator, http://slidesha.re/2Lma6

15. Introduction The Study Conclusions
CONCLUSION
Thank you
Luis Fernandez-Luque (luis.luque@norut.no)