Study of the ePatient as a provider of health content in the Internet [5 Aud 1100 Fernandez Luque]

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])