Analysis of YouTube Comments in ePatient Videos

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

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

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 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)

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.

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)

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

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)

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!

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

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

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 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

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

Analysis of YouTube Comments in ePatient Videos

by Luis Fernandez Luque

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