The document discusses challenges in health social networks and the need to better understand "ePatients". It proposes evaluating ePatients' characteristics like education, age, skills, and expectations to develop a typology. An approach is outlined using surveys, focus groups, and validated scales to assess eHealth literacy and patient activation. Combining these could identify ideal, digital citizen, analog, and risk ePatient types to help engage the right users with the right social media tools. The goal is personalized ePatient interventions for personalized medicine.

1. +
III Workshop on Technology
for HealthCare and Healthy
Life
Polytechnic University of
Valencia
Looking forward the “classical” e-
patient: approach to a typology
PSINET Research Group
Open University of Catalonia.
marmayones@uoc.edu @armayones

2. +
Challenges in Health Social
Networks
 We need to know more about “Law of attrition” here is the
observation that in any eHealth trial/tool a substantial
proportion of users drop out before completion or stop using
the application. (Eynsebach;2005)
 “Our user (APTIC) shows a high level of self-efficacy,
perceived social supports in the PRE analysis” …Can we
improve more the “key variables”? What about the rest of
patients?
 Our (unrealistic) vision: “If I create a “wonderful” Social
Network , people will come”.
 Not taking in account the role of Facilitator/ Community
manager? …Are you specialist in human behavior?
….Captology.

3. +
Do you have questions like?...
 Why the people “hate” my Social Network?
 Why they don’t are “active users” with a high level
of participation?
 Why they don’t come? It’s “Free” and “Wonderful
tool for the patients”
 Why we are working for only a part o population?
At list……

4. +
Where are the ePatients?

5. +
We need to know more about
ePatients:
Evaluating all their characteristics:
 Educational level
 Age
 Attitudes
 Informatics skills
 Informational skills
 Reading level
 Writing skills
 Social skills
 Expectative about health/disease
 Interest in collaborate in research

6. +
Our approach
 Survey/Focus
Group/In-deep interviews
about demographic and social information
 Use of two specific Scales (or create one)
-eHeals Scale: eHealth Literacy
Scale
-Patient Activation Measure Scale.

7. +

8. +

9. +

10. +
eHealth Literacy Scale
I know what health resources are accessible through the Internet.
I know where to find useful health resources on the Internet.
I know how to find useful health resources on the Internet.
I know how to use the Internet to find answers to health issues.
I know how to use the information you find on the Internet about health
for me to be helpful.
I have the skills to assess health resources found on the Internet.
I can distinguish in Internet health resources of good quality of poor
quality
I feel safe when using Internet information in making health decisions.

11. +
Patient Activation Measure (PAM)
 When all is said and done, I am the person who is
responsible for managing my health condition.
 I am confident that I can take actions that will help prevent or
minimize some symptoms or problems associated with my
health condition.
 I know what each of my medications do.
 I am confident that I can tell when I need to go get medical
care and when I can handle a health problem myself.

12. +
 I know the different medical treatment options available for
my health condition.
 I have been able to maintain the lifestyle changes for my
health that I have made.
 I know how to prevent further problems with my health
conditions.
 I am confident I can figure out solutions when new situations
or problems arise with my health.
 I am confident that I can maintain lifestyle changes like diet
and exercise even during times of stress.

13. +
But, if…we combine both..?
eHealth Literacy/
High PAM Low PAM
PAM
High eHealth “Ideal” ePatient “Digital Citizen”
Risk
Low eHealth “Analogic patient”
patient/Exclusion

14. +

15. +

16. +

17. +

18. +

19. +

20. +

21. +

22. +

23. + At the end…The Personalized intervention with
ePatients can be a good strategy to improve our
knowledge about
 PersonalizedMedicine:
Right Drug, Right Patient, Right Moment
 Personalized ePatient Intervention
 Right Social Media Tool, Right Person,
Right Moment

24. +
Thanks for your attention!
marmayones@uoc.edu
@armayones