Aptic. Developing a Social Network for ePatients: lessons learned M.Armayones; Gómez,B; Hernández,E; Guillamón,N; Nafría,B, Ontiveros,G; Pousada,M Psinet Research Group. Open University of Catalonia (Spain) A.Bosque Hospital Materno Infantil St.Joan de Déu (Barcelona,Spain)
A Collaborative initiative from the very beggining
University- Applied research UOC Research group PSiNET
Health system Sant Joan de Déu pediatric Hospital Associations’ Area
Finantial 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
After 3 “Focus Group” with 30 responsibles of patients' association
Patient’s says us: We want…. (miscellaneous)
To be a source of knowledge for the Hospital (“we are experts in suffer diseases” our doctors in the disease treatment, we live 24 hr a day with our condition)
The collaboration of our health care team (is very common in patients association)
Resources and help to evaluate health information (internet, and the rest of social media)
A bilingual platform (Spanish-Catalan)
“ Automatic tools in the platform (ex.reminder activities, automatic messages)
Easy, easy and…. easy to use and to maintain!.
Not only “technical information” we need to share “vital experiences”
Personalization of the platform (different styles for different associations)
Not a platform only for “the PSiNET research project”… a platform for the patients
Control about privacy ( a “safe space” in the Hospital server)
Patient’s says us: We don´t …. (miscellaneous)
To be only a “experiment” for the Hospital and University.
To much information, we can’t process all
We need actions…not only ideas
A “standard” platform we want to collaborate in the design and decide about privacy of our information.
Another Website more…. (“We have our own website for the association”).
Expend a lot of money, we have priorities (research, emotional support,etc)
Lost our association identity (if our associates they go to networks…what about our association?)
Free platform (Open Source ,ELGG)
Without publicity Privacy ( restricted acces) Personalized profile (modular structure) Control about privacy (APTIC is hosted in Hospital St.Joan de Déu) Collaboration of Patient's Associations Space (to increase the level of trust between users)
APTIC was developed following FLHN Methodology. F acilitation: professional facilitation (community manager) from the beginning. Need analysis. Usability analysis. Formative avaluation L inked: with “Patients Association's Area” of St.Joan de Déu Pediatric Hospital in Barcelona (Spain). Health Network: Working collaboratively with patient's association and responsibles of other Health Networks: “Cuidadoras en Red”,”MiSalud”,”Pesca” learning about “best practices” of those networks
Lesson learned 1.. and ideas we hope will be useful for other researchers
We are working with the users (families and professionals) not for the users. The facilitation (community manager) is a key aspect of the success of our platform.
The rol of community manager it will be not “paternalistic” (we can repeat the “old model” the rol of community manager it will be “collaborative, facilitator, motivational....” ...”making the things happen”
The “need analysis” it's a wonderful opportunity to work and learn from the ePatients and to meet personally.
Work with the “Association's Space” in the Hospital increase the trust of the users and is becoming a “meeting point”
A Community of practice within a social network structure
Menu with community options
Latest posts in the community
Lessons learned 4 and some reflections
20 users represents the 80% of activity in APTIC (“Law 1-9-90?) We can don anything? We must to do...? (we know that we have a huge number of lurkers) 70% of most active users have a medium o high academical level. ¿What about the rest? Is a evidence of “eHealth literacy divide”? The level of “self-disclosure” between members is not as high as we thought at the beginning of our project (APTIC is more a “community of practice” than a space for social relations) A huge number of users are professionals. The have a big interest in participate in APTIC. At the end it seems that we are finding ways of collaboration in a “peer to peer” platform. We have had a “APTIC group in Facebook” with 1500 people..and one day...it dissapeared (We have evidences).....be careful
Just selecting and dragging to the dashboard.
Some information about activity
Users (sept 2011): 384 Mail messages between users : 20733 Bookmarks: 420 (You can share with members “bookmarks” while you are navigating) Files uploads: 291 (You can “upload” files to share with others members) Vídeos: 170 (Videos uploadeds from Youtube,Vimeo) Blogs entries: 135 (You can create your own blog) Events in Calendar: 123 (Share activities of patients associations) Forums Topics : 71 Quotes of the day : 65 Messages in friend's wall : 734
Lessons Learned 2
We have had serious difficulties in obtaining data for a pre-post design (evaluating: self-efficacy, Perceived social support, quality of life) (remember the people do not want to be an "experiment"). Too long instruments? The quantitative analysis can keep us understanding what is happening on the network. We decided to make a qualitative assessment (through in-depth interviews) Let's see some results...
From in-dep interviews I use APTIC for.....
Ask other parents
Send information and resources
For personal use (mail,personal interest)
To find support and help
To meet other families with the same condition
To know more about the disease
From in-deep interviews I use APTIC for:
Advantages over others networks (all of them are using FB).
Share with others like you
Specific contents of health
Information well organized
Easy access to content and resources
“ Seriosus contents”
Non profit initivative
In the interviews..asking about APTIC and Facebook.
From transcriptions (n=6 in-deep 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. It has a much more professional and serious structure U3. “With APTIC I don't feel alone” U4. “APTIC it's for personal purposes FB for social purposes” U1. “I prefer closed networks in health networks. U2. “Really I don't like FB but all the people are in FB” U5. Aptic is a social network of people to people!
Lessons learned 3 and some conclusions to share...
We are working with a “few” number of families. For most of them APTIC it's a useful tool and they are finding help,support,solidary and good resources. The “local” projects can be a part of the solucion of “global” problems. We must avoid to work in a “social network centered” perspective. The most important is the patient not our platform (it seem obvious...). We can't believe that our tool are the “best” “unique” o “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
Lessons learned 3 and some conclusions to share with colleagues and friends.
We are working with a “few” number of families. For most of them APTIC it's a useful tool and they are finding help,support,solidary and good resources. The “local” projects can be a part of the solucion of “global” problems. We must avoid to work in a “social network centered” perspective. The most important is the patient not our platform (it seem obvious...). We can't believe that our tool are the “best” “unique” o “final”. We need to know what is the “eROI” (emotional ROI) of APTIC and others (Facebook,Youtube,etc.
We need to know what the user gets emotional benefits of each tool to know more about their overall experience with different social networks, but analyzing each person (customizer social networking experience).
personalized medicine = personalized experience in use of SM for Health?