This is a short presentation focused on open ethical questions/dilemmas of the usage of the Web 2.0 by the e-Patients. This is a presentation delivered in the Seminar "The ePatient: Ethical challenges" organized by Bioethics research group of the NTNU (Trondheim, Norway) http://www.bioethics.ntnu.no

1. Ethical Challenges of
the e-Patient 2.0
Luis Fernandez Luque (luis.luque@norut.no)
PhD Student at Norut­ Tromsø Telemedicine Laboratory
th
Trondheim, 30 March 2009

2. Summary
What is the Web 2.0?
Health 2.0, Medicine 2.0, Whatever 2.0
The e­Patient in the Web 2.0
Ethical Challenges
Conclusions

3. The Web 2.0
The Web 2.0 is mainly a buzz/fashion word
(marketing) meaning the Web from the 2000s
More integrated information and services: Google
Maps + others sources= find your doctor (Mash­ups)
It is a web where you can create/modify content
(comments, videos, Wikipedia)
It is a Social Platform (e.g. FaceBook, SecondLife)
http://en.wikipedia.org/wiki/Web_2.0

4. Health 2.0, etc 2.0
They are buzz terms: most of the Web 2.0
technologies were developed in the 90s.
Web 2.0 and Health 2.0 are more quot;industrial termsquot;
and trademarks.
Medicine 2.0 is more academical
Other trademarked terms: PHR 2.0, Patient 2.0
What is true: the Web 2.0 is used for health
Eysenbach G, “Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation,
and Openness” J Med Internet Res 2008;10(3):e22 URL: http://www.jmir.org/2008/3/e22/
Hughes B, Joshi I, Wareham J, “Health 2.0 and Medicine 2.0: Tensions and Controversies in the
Field”, J Med Internet Res 2008;10(3):e23, URL: http://www.jmir.org/2008/3/e23/
The e­Patient White Paper, http://www.acor.org/epatientswiki/index.php/Main_Page

5. Web 2.0: Information and Applications
Access Health Information: in
Virtual Worlds(
CDC & Second Life) , in FaceBook,
etc.
Manage your Personal Health
Records (e.g. Google Health)
Access Self­management Tools in
FaceBook (e.g. Diabetes Tools)

6. Web 2.0 Sharing/Creating
PatientsLikeMe: Share your
Health Records with the
Community
SixUntilMe: Blogging
how to hide an insulin
pump in a wedding
RateMDs: rate you
dress
Doctor

7. Youtube patient
Laurenvparrott:
Reasons for creating
videos about Multiple
Sclerosis

8. Web 2.0: Socializing

9. Web 2.0: The tendency, PHRs 2.0 with a
Ecosystem of applications (e.g. Indivo)
Mandl KD, Kohane IS. No Small Change for the Health Information
Economy N Engl J Med. Mar 26 2009 360(13):1278­1281

10. Ethical Challenges
Some Early Examples

11. The Anorexia Case
Pro­anorexia websites: What a clinician should know. Int J Eat Disord.
2008 Nov 29;42(4):367­370

12. Medicalized flirting 2.0?

13. Manage your Death 2.0

14. Patients Drug Evangelist?
• Q: quot;I am in a wheelchair is it worthwhile taking tysabri?quot;
• A: quot;In a word: ABSOLUTELY! It is amazing how much freedom
I recovered when I started walking!quot;
• Study of the Comments in YouTube videos submitted to MIE
L Fernandez Luque, N Elahi, FJ Grajales III, “An analysis of
personal medical information disclosed in YouTube videos created
by patients with multiple sclerosis”, MIE 2009

15. Patients self-organized Research
sharing PHRs
• Patient self­organized Lithium Trial
www.patientslikeme.com/als_lithium
• The Practicing Patient (New York Times)

16. Minors: sharing Genetic Knowledge
23andMe.com you can get a genetic­
kit to know about your gens and
share/compare it with the
community
FAQ: The saliva kit we provide for participation
in our service is not optimized for children
under three years of age. If you are purchasing
a kit for an infant or toddler, it may be difficult
to obtain the required amount of saliva.
Terms of Use: “You may not use the Services
and may not accept the TOS if (1) you are not of
legal age to form a binding contract with
23andMe,”
Terms of Use: “Your saliva, once submitted to
and analyzed by us, becomes our property. Any
genetic information derived from your saliva
remains your information.”

17. Minors: Sharing mental
diseases Information

18. Minors: others
• 47% of the analyzed profiles of teenagers contained information
about drug abuse, unsafe sex, alcohol, etc.
Moreno, M. A., Parks, M., & Richardson, L. P. (2007). What are adolescents
showing the world about their health risk behaviors on MySpace?
MedGenMed : Medscape general medicine, 9(4).
• Parents blog about their sick children: quot;the parents of a child
who had received a heart transplant were paid an unsolicited
visit by the family of their son's organ donorquot;
Tunick, R., & Mednick, L. Commentary: Electronic Communication in the
Pediatric Setting­­Dilemmas Associated with Patient Blogs. J Pediatr
Psychol.J. Pediatr. Psychol., August 13, 2008; (2008)

19. Doctor-Patient relationship
Blogging to complain:
o 15% of the Doctor's blogs contained complains about their patients,
some with private information:
Lagu, T., Kaufman, E. J., Asch, D. A., & Armstrong, K. (2008). Content of
weblogs written by health professionals. Journal of general internal
medicine, 23(10), 1642­1646.
o I found something similar of patients blogging about their doctors:
Luque, L. F. et al.
“Study of the ePatient as a provider of health content in the Internet” Medicine 2.0,
2008, Toronto, Canada.

20. The future of privacy
• Aggregation of personal data: enhanced by face recognition
software
European Network and Information Security Agency,
Security Issues and Recommendations for Online Social Networks
• Google analyses your email: send yourself a health­related (e.g.
about cancer) email to Gmail and check the ads...You will find
herbal cures for cancer.
• Analyzing your MySpace profile to model your health behavior
for prevention (Personalized Public Health)
Bonander, J. Personally Tailored Health Information: a Health 2.0 Approach.
Medicine 2.0, 2008, Toronto, Canada.

21. Open Questions (I)
Where are the limits to privacy? Genetic
information? What if people are posting your
photos?
Can you track your private information? Can you
delete it?
Can researchers quot;have funquot; analyzing public
information of ePatients? and the Government?

22. Open Questions (II)
Is the legislation ready for these new applications?
Where are the servers of the Web 2.0 applications?
­Could computing....
What are the future impacts in the Healthcare
system?
How do we do research with e­Patients?
Could be possible to do a RCT in a viral­based
health promotion intervention?

23. Open Questions (III)
• Many are still considering that patients don't want to release
their private information but they are doing it.
• What should we do?
1) Warm people about the dangers of the diabolic Internet
(Paternalist approach)
2) Provide the people with skills to take advantage of the new
Web 2.0 era (patient­centered approach)
• Are the health professionals ready or aware of what is going on?

24. Thanks for your attention
Do you have more
Open Questions?
Do you have
answers?
Please post your
comments in
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