Beni Gómez - APTIC a knowledge repository for parents and caregivers of children with chronic diseases

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)

[email protected]

http://www.uoc.edu/in3/psinet

APTIC. Developing a Social Network for ePatients: lessons learned.

A collaborative initiative from the very beginning

University- Applied research

UOC

Research group PSiNET

Health system Sant Joan de Déu pediatric Hospital

Patients Associations’ Area

Financial support for coordination

TicSalut Foundation

Technological Support

Carlos Bocanegra

General Execution Support

Centre for Global ehealth Innovation

Open Software. Developers community

Information and dissemination

Patients Associations

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.

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.

And this is our response

APTIC Open source platform Without publicity Privacy Personalized profile Facilitator Collaboration with the Hospital

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.

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.

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.

Lessons learned... and some ideas we hope will be useful

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A Community of practice within a social network structure

Just selecting and dragging to the

dashboard.

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Menu with community

options

Latest posts in the community

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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

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).

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.

Some thoughts

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)

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

• 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

Results from in-depth interviews Advantages over other networks (including

Facebook)

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!”

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.

Thanks for your attention!

[email protected]