Your SlideShare is downloading. ×
Study of the ePatient as a provider of health content in the Internet [5 Aud 1100 Fernandez Luque]
Upcoming SlideShare
Loading in...5
×

Thanks for flagging this SlideShare!

Oops! An error has occurred.

×

Introducing the official SlideShare app

Stunning, full-screen experience for iPhone and Android

Text the download link to your phone

Standard text messaging rates apply

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

1,047
views

Published on

Published in: Health & Medicine, Technology

0 Comments
3 Likes
Statistics
Notes
  • Be the first to comment

No Downloads
Views
Total Views
1,047
On Slideshare
0
From Embeds
0
Number of Embeds
0
Actions
Shares
0
Downloads
17
Comments
0
Likes
3
Embeds 0
No embeds

Report content
Flagged as inappropriate Flag as inappropriate
Flag as inappropriate

Select your reason for flagging this presentation as inappropriate.

Cancel
No notes for slide

Transcript

  • 1. 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
  • 2. 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
  • 3. 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)
  • 4. 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.
  • 5. 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
  • 6. 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.
  • 7. 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.
  • 8. 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.
  • 9. 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.
  • 10. Introduction The ePatient Survey Results Conclusions As a consumer Confidence Confidence in Health Information providers
  • 11. Introduction The ePatient Survey Results Conclusions As a consumer Confidence Confidence in Health Information Un-Confidence providers
  • 12. 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% fin lea ma co pr ac ad fin im d rn na mp ep qu jus do pr em ar ov oti fro m ge lem e m ir e a tm u y m t if I em on be en ys he yc al oth tte tt elf alt ed ne su er rm he hie ica ed on pp pa yh inf for l tr to fid or tie or an rl vis en ea ife ea tf ro nt' lth ma ap sty tm it m ce o m se pr tio po le en yd nm oth xp ob n int t er er ien lem of m me oc tor yd oc pa s yd nt tor tie ce oc nts tor
  • 13. 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%
  • 14. 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
  • 15. 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.
  • 16. 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” ).
  • 17. 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
  • 18. 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.
  • 19. 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)