Beni Gómez - APTIC a knowledge repository for parents and caregivers of children with chronic diseases
APTIC. Developing a SocialNetwork for ePatients: lessonslearned.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) firstname.lastname@example.org http://www.uoc.edu/in3/psinet
A collaborative initiative from the very beginning Health system Sant Joan de Déu Information and pediatric Hospital disseminationPatients 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
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 responseAPTIC 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 Associations Area” of an Hospital.Health Network Working collaboratively with patients 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) notfor the users.The facilitator (community manager) is key in the successof our platform.The community manager can’t be paternalistic, like in the“old model”, but collaborative, motivator.... should makethings happen.
Lessons learned... and some ideas we hope will be usefulThe needs analysis presents a wonderful opportunity towork and learn from the ePatients.Work with the “Patients Associations Area” of the Hospitalincreases the trust of users.
A Community of practice within a social network structure 9
Platform activity statisticsUsers (sept 2011): 384Mail messages between users: 20733Bookmarks: 420File uploads: 291Vídeos: 170Blogs entries: 135Events in Calendar: 123Forums Topics : 71Quotes of the day: 65Messages in friends wall: 734
Some thoughts20 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 highacademic level. What about the rest? Is there an “eHealthliteracy divide”?The level of “self-disclosure” is not as high as weexpected. (APTIC is more a “community of practice”than a site for social relationships).
Some thoughtsUsers 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 difficultiesSerious difficulties in obtaining data for a pre-postdesign. People don’t want to be subjects in an experiment. Perhaps our instruments are too long?Quantitative analysis can prevent us from understandingwhat is happening on the network. We decided to make aqualitative assessment (through in-depth interviews)
Results from in-depth interviewsI 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
Results from in-depth interviewsAdvantages 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
About APTIC and Facebook From transcriptions (n=6 in-depth interviews)U1 “In APTIC I dont upload pictures of my holidays. In Facebook I dont 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 dont feel alone”.U4. “APTIC is for personal purposes; FB for social purposes”.U1. “For health issues, I prefer closed networks”.U2. “I dont like FB, actually, but all the people are in FB”U5. “APTIC is a social network: people to people!”
Some conclusionsWe 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 shouldnt 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.