1. APTIC: a knowledge repository for parents and caregivers of
children with chronic diseases
Manuel Armayones *1, Beni Gómez-Zúñiga*2, Eulàlia Hernández Encuentra *3 Noemí Guillamón Cano*4 Modesta
Pousada*5,,Begonya Nafría Escalera*6, Anna Bosque**
*
Psychology and Educational Sciences Department. Internet Interdisciplinary Institute (IN3) Psinet Research Group.UOC,
Barcelona, Spain
1
marmayones@uoc.edu
bgomezzu@uoc.edu
3
ehernandez@uoc.edu
4
nguillamon@uoc.edu
5
mpousada@uoc.edu
6
bnafria@uoc.edu
**
Espacio de Asociaciones. Hospital Materno Infantil St. Joan de Déu. Esplugues de Llobregat. Barcelona,
abosque@hsjdbcn.org
Abstract— their relatives are particularly aware of the fact that
collective action is necessary to improve, as much
The APTIC social network has been developed by Psinet as possible, the quality of life of people with a
research group at the Universitat Oberta de Catalunya, together
with the Hospital of St. Joan de Déu,and Fesalud Foundation,
particular health condition [2].v
and it has beenpartially funded by Tic Salut Foundation (Health
Department of the Catalan government). Our social network From the point of view of the health system,
aims at enabling individual members of patient’s associations
(mostly parents of children with chronic and rare diseases) to
knowledge created by patients and their families is
share experiences, information, advice and, ultimately, to offer of non-expert nature. However, it clearly embodies
them on-line tools to improve the quality of life of the entire the experience of living with the illness (about
family.
To access APTIC it is necessary to request a username and
which healthcare professionals usually does not
password and to fill out a questionnaire on personal data and have direct experience) by forming partnerships
motives for accessing APTIC. Simultaneously, we launched a with health professionals [3, 4] or having impact on
Facebook group through which the facilitator made the platform
known to various associations, and encouraged them to join
health policies [5, 6, 7, 8]. While the healthcare
APTIC. system is obviously concerned with improving the
We carried out in-depth interviews with six APTIC users. We quality of care, no evidence base for the effects of
describe the dimensions and opinions that emerged in the content
analysis of interviews: User motivation to use of APTIC,
the use of services, quality of care, satisfaction, or
evaluations of contents, advantages over Facebook and health of patients has been created from a
opinion about the role of the facilitator in APTIC systematic review of the effects of involving
patients in the planning and development of health
care [9].
I. INTRODUCTION
Though networks of people are part of everyone’s In this framework, where the balance in shared
personal and professional lives, they take on special responsibilities is shifting over time to patients and
significance for the aging, the disabled and the their families, and requires continued learning and
chronically ill [1]. The associations of patients and keeping up to update with treatments, self-care and
scientific findings [10], the number of associations

2. for patients, healthcare-users and caregivers is Our social network has been built on open source
increasing exponentially [11]. These associations software and through collaborative work between
argue that the health system should be designed to organizations:the hospital itself, patients'
meet the needs and preferences of patients [12], and, associations, and individual users.
to this end, they have made various proposals for We will offer our first results and some thoughts
declarations, such as the Barcelona Declaration of about the work with patients and families through
Patients' Associations, the Spanish Patient Forum social networks. Our goal is to enhance their
[13] or the Declaration on-patient centered positive effects. But we consider that is impossible
healthcare from the Alliance of Patients' to analyze the isolated effect of one health social
organizations [14]. network like APTIC. Usually, users are linked to
more than one network, and we think that we must
An example of an innovative initiative for consider the “personal network experience” of each
collaboration between patients associations and the user, instead of the “APTIC experience”.
health system is the Associations Area at the Sant In our paper we will try to analyze the different use
Joan de Déu Pediatric Hospital in Barcelona (Spain). for health purposes of two social networks:
This is a physical space, managed by the hospital, Facebook and APTIC.
where patients' associations can meet and provide
information and support to patients and their
II. METHODS
families, using the center’s resources and facilities.
Thus, this area is configured not only as an ideal We perform a qualitative and quantitative
environment for intervention, but also for the analysis on data from two sources: in one hand, a
evaluation of the processes that take place there. qualitative analysis of in-depth interviews; on the
This is why this Hospital was choosen to develop other, the analysis of quantitative data on access
the APTIC project, and users behavior in APTIC.
In the qualitative analysis, a sample of six APTIC
The APTIC social network has been developed by users participated in interviews through instant
PSiNET research group at the Universitat Oberta de messaging. Thematic coding with constant
Catalunya together with Hospital de St. Joan de comparison was used for interview transcript.
Déu and Fesalud Foundation, and it has been Participants were selected among the most active
partially funded by Tic Salut Foundation (health users of APTIC because the high level of
department of the Catalan government). Our social participation was an inclusion criterion. Another
network aims at enabling the individual members of inclusion criterion was to have an active account in
patients’ associations (mostly parents of children Facebook and to use Facebook for health purposes.
with chronic and rare diseases) to share experiences, All users interviewed were seeking help for others,
information, advice and, ultimately, to offer them because they were parents of children with a
on-line tools to improve the quality of life of the chronic disease.
entire family. The facilitator of the social network conducted
Participation in specialized social networks, like interviews, and a group of three researchers, who
APTIC, offers a great opportunity to use technology were members of the research team but, other than
with low cost and with a large impact on health to that, had no relationship with the subjets.
improve quality of life. From the health psychology Socio-demographic data analysis of APTIC users.
perspective, variables such as the perception of self- Analysis of data from Google Analytics and
efficacy, empowerment, and social support are key analysis of user behavior data extracted through
to improve quality of life. We are examining these different pluggins for Elgg.
variables and network usage in order to establish
whether social networks are indeed useful for III. RESULTS
parents.

3. We analyzed the transcripts of interviews for U2... “If I want to search for "serious"
emerging themes concerning four dimensions: content, I prefer APTIC ...”
a) User motivation to use of APTIC U3:… APTIC contents are good, interesting
b) Evaluations of contents and useful.”
c) Advantages over Facebook
d) Opinion about the role of facilitator in APTIC
c) Advantages/Disadvantages over Facebook
We describe the main results of each dimension
with transcripts of different users: The users value positively the privacy of our
network. This is a key element because they
a) User motivation to use of APTIC feel that in Facebook they are less likely to
find “real solidarity” and real support from
They use APTIC to ask questions to other other people like them. In APTIC, they find
parents with kids with the same condition, “clear and real altruism in a social network”.
to find support and help, and as a way to APTIC is a non-profit project, without
meet other families that can share publicity, and it is absolutely free. Users
information about the disease. consider this to be evidence of “real altruism”.
They consider that the privacy of APTIC Another advantage is the fact that APTIC is
allows users to have a “private” space for hosted in the St. Joan de Déu’s servers, and,
personal purposes. in the case of Facebook, users don’t know
where is hosted their personal information.
Users say: The main disadvantages are that in Facebook
U4:“For health issues, I prefer closed you can find more users, more connected
networks” people, and information can be spread easily.
U3: “With APTIC I don't feel alone”.
U2: “Users of this network have in common Users say:
a relative (particularly children) with a
disease ... and these are not things to talk U1:“APTIC is for personal purposes; FB for
openly to just anyone ... social purposes”
U2: “Contacts with other mothers of
children suffering of X are only through U2: “I don't like FB, actually, but all the
APTIC and not with FB” people are in FB”
U3 “In APTIC I don't upload pictures of my
holidays. In Facebook I don't write like I
b) Evaluations of contents. write in APTIC”.
They consider that APTIC allows an easy
access to content and resources about
different diseases and disabilities. d) Opinion about the role of facilitator in
They appreciate the advantage (with respect APTIC
to Facebook) to ba able to organize the
information in different groups, and with APTIC has a facilitator, a professional that
different tools (blogs, web pages, uploading offers guidance, information, advice about the
text files, uploading video, open forums, use of the social network (creating groups,
creating bookmarks, etc.) solving technical problems, giving advice
about different possibilities, etc.)
Users say:

4. Users say that the facilitator has a key role to Blogs entries: 152
build trust and confidence about APTIC and Events in Calendar: 129
increase the chances that there are Forums Topics : 71
Quotes of the day: 65
professionals behind. Messages in friend's wall: 734
Figure 1: Description of use of APTIC
U2: "APTIC has a team that manages and
coordinates the network. It has a much more
ACKNOWLEDGMENT
professional and serious structure”.
U1 “I think it's that the work you develop as a The authors want to thank Hospital St. Joan de Deú,
motivator is vey important. Having Fundació TIC-SALUT (Health Department
professionals behind the network increases Catalonia Government) and Fundación Fesalud for
confidence”. their contribution to our project.
REFERENCES
IV. CONCLUSIONS 1. Fox S. Participatory Medicine: Text of my
In its first year of activity, APTIC has become a speech at the Connected Health symposium. 2008
reservoir of information about disabilities and rare Nov 3. URL:
diseases affecting children and teenagers. Thus, http://e-patients.net/archives/2008/11/participatory-
APTIC adds value to its users because the medicine-text-of-my-speech-at-the-connected-
information included in the social network becomes health-symposium.html.
knowledge available to all members. Archived at:
However, and contrary to what we expected, http://www.webcitation.org/5sjuF9DxZ
APTIC has not developed into forums, a space for
dialogue or exchange of personal experiences, but 2. Department of Health. Patient and Public
into repository of information. Users evaluate very Involvement in Health: The Evidence for Policy
positively the structure of the platform and the Implementation. London: Department of Health
possibility to save the information. Publications;2004. URL:
Moreover, social networks such as Facebook http://www.dh.gov.uk/prod_consum_dh/groups/dh_
have become the main way of promotion and digitalassets/@dh/@en/documents/digitalasset/dh_4
dissemination most users have learned about the 082334.pdf.
network through Facebook. Archived at: http://www.webcitation.org/5sjuM9lib
Parents and families are using our social network http://www.webcitation.org/5sjuM9lib
in ways different from those originally planned, and
we need to continue adapting it to their needs and 3. Ferguson T. Online patient-helpers and
actual use. APTIC is becoming something a physicians working together: a new partnership
“collaborative workspace” (a space for uploading for high quality health care. BMJ 2000 Nov
videos, files, etc.), ratherthan a space for “social 4;321(7269):1129-32.
relations”.
4. Lorig KR, Holman H. Self-management
education: history, definition, outcomes, and
mechanisms. Ann Behav Med 2003 Aug; 26(1):1-7.
Users (nov 2011): 421
Mail messages between 21681 5. Fundación Farmaindustria. El paciente en España.
users: Mapa nacional de asociaciones de pacientes.
Bookmarks: 483 URL:http://www.farmaindustria.es/idc/groups/publi
File uploads: 291
c/documents/publicaciones/farma_1071.pdf.
Videos: 277

5. Retrieved at: 9 Crawford MJ, Rutter D, Manley C, Weaver T,
http://www.webcitation.org/5sjuWt4bh Bui J, Fulop N, Tyrer P. Systematic review of
http://www.webcitation.org/5sjuWt4bh8. involving patients in the planning and development
of health care. BMJ 2002 Nov; 325: 1-5.
6.García-Sempere A, Artells J. Organización,
funcionamiento y expectativas de las 10. Brink SJ, Miller M, Moltz KC. Education and
organizaciones representativas de pacientes. multidisciplinary team care concepts for paediatric
Encuesta a informadores clave. Gaceta Sanitaria and adolescent diabetes mellitus. J Pediatr
2005; 19 (2): 120-126. Endocrionol Metab 2002; 15 (8): 1113-1130.
7. Quennell P. Getting a Word in edgeways? Patient 11. Baggott R, Forster R. Health consumer and
group participation in the appraisal process of the patients’ organizations in Europe: towards a
National Institute for Clinical Excellence. Clinical comparative analysis. Health Expectations. 2008;
Governance: an International Journal 2003; 8(1): 11(1): 85-94.
39-45.
12. Web pacientes. URL:
8. Herxheimer A. Relationships between the http://www.webpacientes.org/fep/. Retrieved at:
pharmaceutical industry and patients’ organisations. http://www.webcitation.org/5skylOVmr
British Medical Journal 2003; 326 (7400), 1208-
1210.