Introduction The Study Conclusions

An Analysis of Personal MedicalInformation Disclosed in YouTube Videos

Created by Patients with Multiple Sclerosis

Luis Fernandez-Luque*1 Francisco J. Grajales III2 NajeebElahi3

1Northern Research Institute (Norut), Tromso, Norway

2eHealth Strategy Office, UBC Faculty of Medicine, Vancouver, Canada

3Norwegian Center of Telemedicine (UNN/NST), Tromso, Norway

MIE 2009, 31 August 2009

Introduction The Study Conclusions

INTRODUCTION

Health Information on the Internet

Health Information on the InternetMost 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-relatedvideos b

More search and view hits for Cancer (178,000) than the RealMadrid (167,000) football team on any given day

aeHealth Trends in Europe 2005-2007: A Population-Based Survey, www.jmir.org/2008/4/e42/bhttp://ebennett.org/hsnl

Patient Generated ContentPatient Generated Content a

41% of ePatients read content created by other patients (blogs, comments, etc.)

5% have posted health comments on a blog

aThe Social Life of Health Information, June 2009. www.pewinternet.org

Introduction The Study Conclusions

INTRODUCTION

Health Information on the Internet

Health Information on the InternetMost 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-relatedvideos b

More search and view hits for Cancer (178,000) than the RealMadrid (167,000) football team on any given day

aeHealth Trends in Europe 2005-2007: A Population-Based Survey, www.jmir.org/2008/4/e42/bhttp://ebennett.org/hsnl

Patient Generated ContentPatient Generated Content a

41% of ePatients read content created by other patients (blogs, comments, etc.)

5% have posted health comments on a blog

aThe Social Life of Health Information, June 2009. www.pewinternet.org

Introduction The Study Conclusions

INTRODUCTION

ePatients in YouTube

Introduction The Study Conclusions

OBJECTIVES

Rationale

There is a paucity in the literature with regard to the characteristics ofePatient 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 informationabout the videos (e.g. Information Retrieval)

Introduction The Study Conclusions

METHODS

Methods

1 Selection of YouTube users (n=27) posting videos about theirlives 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.

Introduction The Study Conclusions

RESULTS

General Classification

Others: Criticism (2,5 %) (e.g. I’m skeptical you REALLY have MS) and comments notcovered in the other categories (e.g. KABOOOOM)

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" withms 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

Introduction The Study Conclusions

RESULTS

Personal Health Information

Publishing about othersI have been watching your videos since my daughter was diagnosed with MS on28-12-07. She was diagnosed with an aggressive form of MS. Betaferon caused liverproblems in a very short time. She has now had 4 infusions of tysabri and now feelsshe is well enough to try and go back to work. Tysabri only became available in Aust onJuly 1/08. This drug has given her hope that she still has a future to look forward to asshe is 26 yrs old. Your improvement since your first dose gave us all hope.a

aWe localized up to 3 other comments about the daughter’s health in YouTube and the samenickname was used in other Social Networks (some with pictures of relatives)

Introduction The Study Conclusions

RESULTS

Medical Counselling & Living with MS tips

Medical CounsellingQuestion 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!

Introduction The Study Conclusions

CONCLUSION

Conclusions of our study

Most comments reflect appreciation towards authorsMany comments are a dialog (e.g. questions, request for futherexplanations 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 SclerosisSome video-authors are patient advocates for certain drugs

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 formodelling users and videos

Introduction The Study Conclusions

CONCLUSION

Ethical concerns: new opportunities for ’direct to consumer’ marketing

Introduction The Study Conclusions

CONCLUSION

Conclusion

Patient guidelines for content access, creation and dissemination areneeded.

Government recommendations (e.g Security Issues and Recommendations forOnline Social Networks, European Network and Information Security Agency)

Adaptation of health information quality guidelines (e.g. HON) to Web 2.0channels

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 sensitiveinformation.

Future WorkAutomatic analysis of comments to improve modelling of videosto build Recommender Systems for Health Education 1

1MyHealthEducator, http://slidesha.re/2Lma6

Introduction The Study Conclusions

CONCLUSION

Thank you

Luis Fernandez-Luque (luis.luque@norut.no)