Presentation of Workshop on Technology for Healthcare and Healthy Lifestyle 2011 Thursday 1st Dec 2011 Session III http://www.tsb.upv.es/wths2011

1. APTIC. Developing a Social
Network for ePatients: lessons
learned.
M. Armayones1, B. Gómez-Zúñiga1, E. Hernández1, N. Guillamón1;
B. Nafría1, G. Ontiveros1, A. Bosque2 & M. Pousada1.
1PSiNET Research Group. IN3. Open University of Catalonia (Spain)
2 Hospital Materno Infantil St. Joan de Déu (Barcelona, Spain)
marmayones@uoc.edu
http://www.uoc.edu/in3/psinet

2. A collaborative initiative from the
very beginning
Health system
Sant Joan de Déu Information and
pediatric Hospital dissemination
Patients Associations’ Area Patients Associations
University- Applied
General Execution Technological
research
Support Support
UOC
Centre for Global Carlos Bocanegra
ehealth Innovation Research group
PSiNET
Financial support for
coordination Open Software.
Developers community
TicSalut Foundation

3. Patients' associations want APTIC to…
 Be a source of knowledge for the Hospital.
 Enable the collaboration among the health care team.
 Be full of resources and help to evaluate health information.
 Be Easy, easy and…. easy to use and to maintain!
 Be a source of “technical information,” but also a place to share
“vital experiences”.
 Be customizable of the platform.
 Maintain control about privacy.

4. They don’t want...
A Facebook2.
To be only an “experiment” for the Hospital or the University.
Too much information; as we can’t process all.
Only ideas; as we need actions.
A “standard” platform.
To be Another Website.
To loose the identity of our association.

5. And this is our response
APTIC
 Open source platform
 Without publicity
 Privacy
 Personalized profile
 Facilitator
 Collaboration with the Hospital

6. APTIC was developed following
FLHN methodology
(Armayones,M;Bocanegra,C;Carrión T,Jiménez Pernett,Blaya,J 2010)
Facilitation
Professional facilitation. Needs analysis. Usability analysis.
Formative evaluation.
Linked
with “Patients Association's Area” of an Hospital.
Health Network
Working collaboratively with patient's associations and with
the managers of other Health Networks.

7. Lessons learned...
and some ideas we hope will be useful for
colleagues.
We are working with users (families and professionals) not
for the users.
The facilitator (community manager) is key in the success
of our platform.
The community manager can’t be paternalistic, like in the
“old model”, but collaborative, motivator.... should make
things happen.

8. Lessons learned...
and some ideas we hope will be useful
The needs analysis presents a wonderful opportunity to
work and learn from the ePatients.
Work with the “Patients Association's Area” of the Hospital
increases the trust of users.

9. A Community of practice within a
social network structure
9

10. Just selecting and
dragging to the
dashboard.

11. 11

12. 12

13. Menu with
community
options
Latest posts in
the community
13

14. 13/12/201117/11/0
13/12/2011 14
9

15. 13/12/201117/11/0
13/12/2011 15
9

16. Platform activity statistics
Users (sept 2011): 384
Mail messages between users: 20733
Bookmarks: 420
File uploads: 291
Vídeos: 170
Blogs entries: 135
Events in Calendar: 123
Forums Topics : 71
Quotes of the day: 65
Messages in friend's wall: 734

17. Some thoughts
20 users represent the 80% of the activity in APTIC
(Law 1-9-90). Is there something we can do about it?
70% of most active users have an average or a high
academic level. What about the rest? Is there an “eHealth
literacy divide”?
The level of “self-disclosure” is not as high as we
expected. (APTIC is more a “community of practice”
than a site for social relationships).

18. Some thoughts
Users are mostly professionals.
We are finding ways of collaboration in a “peer to peer”
platform.
APTIC group in Facebook: 1500 people.
It will disappear… be careful.

19. Some difficulties
Serious difficulties in obtaining data for a pre-post
design.
People don’t want to be subjects in an experiment.
Perhaps our instruments are too long?
Quantitative analysis can prevent us from understanding
what is happening on the network. We decided to make a
qualitative assessment (through in-depth interviews)

20. Results from in-depth interviews
I use APTIC…
• To ask other parents
• To send information and resources
• For personal use (mail, personal interests)
• To find support and help
• To meet other families with the same
condition
• To know more about the disease

21. Results from in-depth interviews
Advantages over other networks (including
Facebook)
• Privacy
• Share with others like you.
• Easy access to content and resources
• Specific and well organized contents of health
information
• “Serious contents”
• Non profit initiative

22. About APTIC and Facebook
From transcriptions (n=6 in-depth interviews)
U1 “In APTIC I don't upload pictures of my holidays. In
Facebook I don't write like I write in APTIC”.
U2 "APTIC has a team that manages and coordinates the
network. It has a much more professional and serious
structure”.
U3. “With APTIC I don't feel alone”.
U4. “APTIC is for personal purposes; FB for social purposes”.
U1. “For health issues, I prefer closed networks”.
U2. “I don't like FB, actually, but all the people are in FB”
U5. “APTIC is a social network: people to people!”

23. Some conclusions
We are working with a little number of families. For most of them,
APTIC is a useful tool and they are finding help, support,
solidarity and good resources. “Local” projects can be part
of the solution for “global” problems.
We must avoid working from a “social network centered”
perspective. The most important is the patient, not our
platform (it seems obvious...).
We shouldn't believe that our tool is the “best”, “unique” or “final”.
The users have a “ personal time” for social network and we
need to offer something different to Facebook. We need to
know what is the eROI (emotional ROI) of APTIC.

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