Introduction The ePatient Survey Results Conclusions
The ePatient as a provider of health content
in the Internet
Luis F. Luque1 I. Basagoiti2 E. Johnsen3 R. Karlsen4
1
Northern Research Institute, Tromso (Norway)
2
ITACA-TSB Research Institute
Technical University of Valencia (Spain)
3
Norwegian Center of Telemedicine, Tromso (Norway)
4
Department of Computer Science,University of Tromso (Norway)
Medicine 2.0, Toronto, Canada, 2008

Introduction The ePatient Survey Results Conclusions
Index
1 Introduction
The ePatient Generated Content
2 The ePatient Survey
3 Results
General Information
As a consumer
As 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, podcasts
44% 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 than
Iron Maiden)

Introduction The ePatient Survey Results Conclusions
The ePatient Generated Content
Youtube Leaders, health educators?
Msier is a 57 year old COPD Laurenvparrott has Multiple
patient. His channel has 20.887 Sclerosis. Her channel has 74.969
views of his 14 videos (most of views of 39 videos, 241
them about breathing techniques) subscribers and 557 comments.

Introduction The ePatient Survey Results Conclusions
The ePatient Generated Content
Community content
Example: tuDiabetes is a multilingual diabetes virtual community
with up to 400 members, it is also a platform for sharing
content such as photos and videos

Introduction The ePatient Survey Results Conclusions
Motivations of the Study
My PhD project is related to Recommender Systems for health
education
I found in the Internet many resources provided by traditional
stakeholders, but also by patients.
I found few research studies considering the patients as
providers of health information.
There is limited knowledge about the patients who are creating
content.
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 about
the patients who are creating content on the web.
Our target group was chronic patients who are actively creating
content.
We aimed to gather their opinions as creators and consumers of
Patient 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 Methods Limitations
1 A web-survey was designed 29 responders.
using LimeSurvey.
The responders are not
2 We searched for patients in representative of the
Google (Web, Video and Blog average PGC consumers.
Search Engines) and Patient’s
Responders are collected
Portals.
from Internet.
3 122 private invitations were sent.
The language was only
The participants were informed
English.
and asked for their consent.

Introduction The ePatient Survey Results Conclusions
General Information
About the responders
29 completed surveys were received.
53% of the responders were female
The 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 posts
in their sites, 16 in other patient’s sites and 3 videos.

Introduction The ePatient Survey Results Conclusions
As a consumer
Confidence
Confidence in Health Information
providers

Introduction The ePatient Survey Results Conclusions
As a consumer
Confidence
Confidence in Health Information Un-Confidence
providers

Introduction The ePatient Survey Results Conclusions
As a consumer
Usefulness
PGC has been helpful to..
100%
90%
80%
70%
Strongly disagree
60% Disagree
Neither agree nor
50% disagree
40% Agree
Strongly agree
30%
20%
10%
0%
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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 ask
their doctors.
Nobody will follow blindly the indications from the PGC.
In some cases, 45% would even consider to change their
doctors.
Discussing PGC with their doctors
Yes, but I don't mention origin How was his/her reaction?
14% Negative
11%
No
18% Positive
Neutral
32%
58%
Yes
68%

Introduction The ePatient Survey Results Conclusions
As a provider
Their Motivations
To share experiences and knowledge with other patients
Social networking
To find and give support (e.g. emotional)
To raise consciousness about their diseases
Others: “to get my feelings out”, “it makes me feel good to know I
help 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 classified
as confidential by the HIPAA (e.g. 76% publish their full
face photo)
Medical Information: most of the patients publish information about
their diagnosis, treatment, date of diagnosis and
relapses.

Introduction The ePatient Survey Results Conclusions
As a provider
Doctor-patient relationship
Publishing about their healthcare
professionals
66%
General opinions
Doctors awareness
24% 68% of the patients
Names
have told their doctors
21% that they are
Work Places
publishing.
17% Their reactions were
Complains
positive (76%) or
neutral (23%)
A recent study found that 18% of the
doctors’ blogs portrayed negatively their
patients (“Content of Weblogs Written by
Health Professionals” ).

Introduction The ePatient Survey Results Conclusions
Conclusions
As creators, their main motivations are to share support and
knowledge.
As consumers, PGC is highly rated in terms of usefulness and
confidence.
Patient-doctor relationship: the reactions of the doctors were
positive, but there are risks, e.g. using PGC to portray negatively
their professionals.
More research is needed: patients should be considered also as
providers of content and not mere consumers.
Publishing guidelines (e.g. HON) could be adapted to support
the 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/laurenvparrott
You can leave a comment.

Introduction The ePatient Survey Results Conclusions
Acknowledgements and further information
This study has been possible thanks to the collaboration of the
ePatients
Further information about our project in our web
(http://myhealthservice.itek.norut.no) or in my email
(luis.luque@norut.no)