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Introduction The ePatient Survey Results Conclusions
The ePatient as a provider of health contentin the Internet
Luis F. Luque1 I. Basagoiti2 E. Johnsen3 R. Karlsen4
1Northern Research Institute, Tromso (Norway)
2ITACA-TSB Research InstituteTechnical University of Valencia (Spain)
3Norwegian Center of Telemedicine, Tromso (Norway)
4Department of Computer Science,University of Tromso (Norway)
Medicine 2.0, Toronto, Canada, 2008
Introduction The ePatient Survey Results Conclusions
Index
1 IntroductionThe ePatient Generated Content
2 The ePatient Survey
3 ResultsGeneral InformationAs a consumerAs a provider
4 Conclusions
Introduction The ePatient Survey Results Conclusions
The ePatient Generated Content
Web 2.0 content
Videos in youtube, blogs, forums, web pages, podcasts44% of the Internet users have created content (2004, USA,www.pewinternet.org), many of them about health.More than 12 million blogs about diabetes (4 times more thanIron Maiden)
Introduction The ePatient Survey Results Conclusions
The ePatient Generated Content
Youtube Leaders, health educators?
Msier is a 57 year old COPDpatient. His channel has 20.887views of his 14 videos (most ofthem about breathing techniques)
Laurenvparrott has MultipleSclerosis. Her channel has 74.969views of 39 videos, 241subscribers and 557 comments.
Introduction The ePatient Survey Results Conclusions
The ePatient Generated Content
Community content
Example: tuDiabetes is a multilingual diabetes virtual communitywith up to 400 members, it is also a platform for sharingcontent such as photos and videos
Introduction The ePatient Survey Results Conclusions
Motivations of the Study
My PhD project is related to Recommender Systems for healtheducationI found in the Internet many resources provided by traditionalstakeholders, but also by patients.I found few research studies considering the patients asproviders of health information.There is limited knowledge about the patients who are creatingcontent.Open questions: Should we recommend their content? What
are the implications? etc.
Introduction The ePatient Survey Results Conclusions
Objectives
The main goal of the survey was to get some information aboutthe patients who are creating content on the web.Our target group was chronic patients who are actively creatingcontent.We aimed to gather their opinions as creators and consumers ofPatient Generated Content (PGC):
Perceived usefulness and trustworthiness.Effects in the doctor-patient relationship.Privacy issues.Motivations.
Introduction The ePatient Survey Results Conclusions
Materials, Methods and Limitations
Materials and Methods1 A web-survey was designed
using LimeSurvey.2 We searched for patients in
Google (Web, Video and BlogSearch Engines) and Patient’sPortals.
3 122 private invitations were sent.The participants were informedand asked for their consent.
Limitations29 responders.The responders are notrepresentative of theaverage PGC consumers.Responders are collectedfrom Internet.The language was onlyEnglish.
Introduction The ePatient Survey Results Conclusions
General Information
About the responders
29 completed surveys were received.53% of the responders were femaleThe average age was 43,6 years (SD = 13)96% had at least some college studies.In the previous 3 months, the median of publishing was: 23 postsin their sites, 16 in other patient’s sites and 3 videos.
Introduction The ePatient Survey Results Conclusions
As a consumer
Confidence
Confidence in Health Informationproviders
Un-Confidence
Introduction The ePatient Survey Results Conclusions
As a consumer
Confidence
Confidence in Health Informationproviders
Un-Confidence
Introduction The ePatient Survey Results Conclusions
As a consumer
Usefulness
find emotional support from other patients
learn from other patient's experience
manage better my health problems
complement the information of my doctor
prepare myself for an appointment
acquire a healthier lifestyle
adjust my medical treatment
find out if I need to visit my doctor
improve my confidence on my doctor
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
PGC has been helpful to..
Strongly disagreeDisagreeNeither agree nor disagreeAgreeStrongly agree
Introduction The ePatient Survey Results Conclusions
As a consumer
Doctor-patient relationship
When PGC is contradicting their doctors
69% of the responders will follow their doctors indication or asktheir doctors.Nobody will follow blindly the indications from the PGC.In some cases, 45% would even consider to change theirdoctors.
Discussing PGC with their doctors
Yes, but I don't mention origin14%
No18%
Yes68%
Neutral58%
Positive32%
Negative11%
How was his/her reaction?
Introduction The ePatient Survey Results Conclusions
As a provider
Their Motivations
To share experiences and knowledge with other patientsSocial networkingTo find and give support (e.g. emotional)To raise consciousness about their diseasesOthers: “to get my feelings out”, “it makes me feel good to know Ihelp others”, “to keep track of my disease”* Lauren’s video to Medicine 2.0:http://www.youtube.com/user/laurenvparrott
Introduction The ePatient Survey Results Conclusions
As a provider
Their privacy
Personal Information: all the patients publish information classifiedas confidential by the HIPAA (e.g. 76% publish their fullface photo)
Medical Information: most of the patients publish information abouttheir diagnosis, treatment, date of diagnosis andrelapses.
Introduction The ePatient Survey Results Conclusions
As a provider
Doctor-patient relationship
Publishing about their healthcareprofessionals
General opinions
Names
Work Places
Complains
66%
24%
21%
17%
A recent study found that 18% of thedoctors’ blogs portrayed negatively theirpatients (“Content of Weblogs Written byHealth Professionals” ).
Doctors awareness68% of the patientshave told their doctorsthat they arepublishing.Their reactions werepositive (76%) orneutral (23%)
Introduction The ePatient Survey Results Conclusions
Conclusions
As creators, their main motivations are to share support andknowledge.As consumers, PGC is highly rated in terms of usefulness andconfidence.Patient-doctor relationship: the reactions of the doctors werepositive, but there are risks, e.g. using PGC to portray negativelytheir professionals.More research is needed: patients should be considered also asproviders of content and not mere consumers.Publishing guidelines (e.g. HON) could be adapted to supportthe creation of content by patients.
The ePatient Blogger Code of Ethics
Introduction The ePatient Survey Results Conclusions
A message from an ePatient to Medicine 2.0
Lauren’s video to Medicine 2.0:http://www.youtube.com/user/laurenvparrottYou can leave a comment.
Introduction The ePatient Survey Results Conclusions
Acknowledgements and further information
This study has been possible thanks to the collaboration of theePatientsFurther information about our project in our web(http://myhealthservice.itek.norut.no) or in my email([email protected])