Medicine20 stanford armayones
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The APTIC social network has been developed by the PSINET research group at the Universitat Oberta de Catalunya, in collaboration with Hospital de St. Joan de Déu and the Fesalud Foundation. The network aims at enabling the individual members of patients’ associations (mostly parents of children with chronic and rare diseases) to share experiences, information, resources and advice. In parallel, we created a group on Facebook (APTIC Facebook Group) to publicize the network and analyse differences in the use of the two platforms (APTIC Social Network vs. APTIC Facebook Group)
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Medicine20 stanford armayones
- 1. APTIC. A social network to meet the needs of families and professionals around chronic conditions in childhood. Hernández-Encuentra, E.; Armayones, M.; Gómez-Zúñiga, B.; Guillamón, N.; Nafría, B.; Ontiveros, G. & Bosque, A. PSiNET research group. Universitat Oberta de Catalunya- IN3 Institute. PSiNET is supported by the University, Research and ITSociety Department of the Catalan Government. 1
- 2. 10% of youth in Catalonia have a cronic disease or disability. 95% of the associations have a Web; 24% a Web 2.0; 5% tailored resources. ICT have supported 90% of families in their health care. 80% of families and associations do want a web for health. 85% of families want better tailored online information, beyond Google. 2
- 3. Sant Joan de Déu pediatric Hospital has an Area for patients’ Associations and their families. 64% of recorded paediatric associations have an active role in the Area for patients. Parents of children with chronic diseases are twice as likely to suffer health problems. 50% of parents of children with chronic diseases look at the Internet before or after visiting their GP; and 34% talk about it with him/her. 50% of not Internet users will be ready to do it. 3
- 4. APTIC: A COMMUNITY WITHIN A SOCIAL NETWORK A community of practice for chronic disease management. Pretending voluntary changes in improving common engagement and empowerment in health care. Taking profit of previous structures. 4
- 5. Patients leading professionals beyond the walls PATIENTS 5
- 6. WE DID; THEY DO We Needs analysis Design and running platform They What they want …and in surprising ways 6
- 7. WE DID Needs analysis Design and running the platform 7
- 8. 3 basic needs that could be met by a Web Tailored and accredited information. Personal and social support. Coordination and Engagement of different health actors. 8
- 9. Web design and running by using 3 strategies Col.laborative initiative. Social network structure. Coordination, facilitation. 9
- 10. A Collaborative initiative from the very beggining Health system Sant Joan de Déu Information and pediatric Hospital dissemination Associations’ Area Patients Associations University- Applied research Technological Support General Execution UOC Support Fe Salud Foundation Research group PSiNET Centre for Global ehealth Innovation Financtial support for Open Software. coordination Developers community TicSalut Foundation 10
- 11. A Community of practice within a social network structure 11
- 12. Just selecting and dragging to the dashboard. 12
- 13. 13
- 14. 14
- 15. 15
- 16. Menu with community options Latest posts in the community 16
- 17. Coordination is the key for running the network Welcome and on-going support Connection among users Chat Quick answering Feedback Information updatings 17
- 18. WE DID and THEY DO We Needs analysis Design and running platform They do What they want …and on surprising ways 18
- 19. That’s APTIC… and users do what they want… 73% 84% The user is a Spanish mother, health professional, and linked to a patients 50% association. 75% 19
- 20. … and ask for continous adjustments. In general communities. In professionals resources. In access controlling and tracking. In dissemination strategies. 20
- 21. After participating in APTIC, … and in surprising ways …met offline? …when taking a decision? …better informed? The most important is NOT on …better relationship with their health care team? / your patients? the …more confortable in health caring? web. … positive change in their lives? … feel better? … 21
- 22. Patients leading professionals beyond the walls PATIENTS 22
- 23. WE DID, THEY DO, WHAT IF? “... If APTIC includes resources for the management of the disease, what if an assistencial team decides to create a community to interact with their patients? Up to now this is not an assistencial tool but, could it be?; why not?; would APTIC support it?...” (from a Department of the hospital) 23
- 24. WHAT IF? Improve positioning services. Collect useful information of rare diseases. Contact to your own health care team. 24
- 25. APTIC psinet.in3@uoc.edu 25
Hinweis der Redaktion
- Please, have a look at these data.
- These data are the basic information we gathered to state which is the situatioin around paediatric chronic diseases management in relation to the Internet in our context. Data show us some needs for health care in chronic conditions, a few existant services for chronic diseases (such as patients associations and the Patients area in the Hospital), and the positive experience and the willingness to use IT for health, we decided to meet these situation by designing APTIC.
- Which is a: Community of practise whithin users share their expertise (such as experiences, information, advices, resources). This social network aims to improve health professionals and parents in health care. By Promoting voluntary use of empowering strategies. This community is buit on preexisting structures such as Patients associations and the Patients area in the hospital. Our social network aims to enable the individual members of patients' associations (mostly parents of children with chronic and rare diseases) and professionals to share experiences, information, advice and, ultimately, to offer them on-line tools to improve the quality of life of the entire family. Thus, the main objective should be transforming health care delivery, as well as being able to take care of the users’ own health. Based on this structure, our main idea is that APTIC --------------------------------------------
- Could be an example of patients leading professionals going beyond the walls of their services and looking for new opportunities, although they still feel threatened by web solutions and social networking for health care.
- I will try to explain our experience by focusinf in two ideas: What we, the project team did; and b) what users do one APTIC is running. Each of these ideas will be developed by two arguments. And in the end, I will try to think abou designing a new path.
- Let’s move to the first idea, what we did. In this context, part of the Associations, Patients and TIC (APTIC) project, aims to analyze needs, new technologies uses and their effects on the wellbeing of individuals. 74 members of associations have been interviewed, 35 associations were surveyed, and 3 focus groups conducted. Data collected shed some light on the relationship between associations and TIC. A 2.0 web should provide: relevant, screened, and accredited information; support and help to individuals; and also provide identity referents. Members value mainly the information gathering easiness, but its possibilities as a collaborative space are not particularly esteemed. Individuals perceive TIC as tools for improving their knowledge of the disease, patient autonomy and the relationship with health professionals. In other words, a 2.0 web must allow for the improvement of their daily lives. Needs seem to be association specific and time changing, and, accordingly, TICs should be time evolving, flexible and customized. In spite of waking up some doubts, a web solution provokes great hopes. These features need to be taken into account in the design and construction of our social network APTIC. Hence, APTIC should: combine validated information with a social network; be easy to use, useful; provide a channel for sharing positive and significant experiences; offer maximum customizability; provide tools for network administration and facilitate members’ participation; provide a platform for the interaction of agents acting in different capacities (parents, professionals, managers, …), a platform that facilitates coordination and engagement of different health actors; and is easily scalable platform to accommodate growth. From this perspective, the aim is to build a community of practice with a shared objective and an expertise that could be shared. This is the reason why a preexisting structure and a constant change are so important. A social network is always in progress, and its nature is, precisely, changing (cambiante). Our social network aims to enable the individual members of patients' associations (mostly parents of children with chronic and rare diseases) and professionals to share experiences, information, advice and, ultimately, to offer them on-line tools to improve the quality of life of the entire family. Thus, the main objective should be transforming health care delivery, as well as being able to take care of the users’ own health beyond the walls. These features have been taken into account in the design and construction of our social network APTIC. It is a free software social network based on communities’ structure (each of them having blog, forum, files and other resources) and it is designed using metacognition and captology premises. Moreover, APTIC has a facilitator to run the network in a systematic way, which makes easier the ongoing adjustment to the user’s needs. Specifically, the facilitator main tasks are (aquí podem citar el nostre poster de Cracòvia?): Send the access form. Send customized messages to users. Answer rapidly. Identify key users and encourage them with useful information. Create general communities and encourage them to contribute with useful information. Provide users with validated and updated information by the research group. Create private communities management and transfer control. Ensure compliance with the Guide for use and the Terms of Use. Contact with association’s presidents and social network promotion at public events (conferences, meetings). Dissemination through the media and Facebook.
- We did a needs analysis by an extended survey, some interviews and a few focus groups with associations members. 74 members, 35 associations surveys i 3 focus. From the needs analysis, we’ve identified three major needs: First: Tailored and accredited information. That means needs for significant information. Second, Not only information about the care process but informations and strategies about how taking care of oneself. And third, Needs to engage every person involved in the care processes in the same project, so sharing objectives and collaborating to promote each others tasks. All these three needs can be met by a We strategy and, despite some initial fears, patients associations rely on the inernet and look at this as something with lots of possibilities. So they are motivated to use it. No eren 4? Des d’una visió de la Web que Desperta dubtes. Genera grans esperances
- On the basis of these results, we designed a web by tinking of three key aspects: 1. APTIC is a project which engages different actors all along their processes. 2. We’d better use a social network structure in order to keep this collaborative spirit. 3. And finally, the need of having a community coordinator to make it run properly.
- Since the beginning, APTIC is a collaborative initivative, that means there are diferent agents working together in it and coordinated by the group at the University. The idea was born in a seminair And was defined after talking with the professionals of the Hospital. Immediately after, we contacted with the Patients Associations in order to know what they needed and their willingnes to collaborate. After that, we need technological support (since we are just psychologists) to design the platform, and this is when an ehealth Foundation joined the project and suggested us to work together with a developers community, since whe wanted to use open software. And when we had to run the platform we needed a coordinator to do it in a systematic way, so we ask for some funds to the catalan health governement.
- And this is APTIC, a community of practice within a social network structure. That means we pretend to grow up and feed the platform in a collaborative way, by sharing and adding different expertises in a common project. For that purpose, we thought the best sructure was a social network. This is the main page of the website. As you can see, you have to register before joining the network. DIAPOS d’APTIC Des de fora Un cop dins Dashboard Perfil Comunitats
- From the very beggining you can tailor your dashboard just by selecting and draging the widget you prefer. So it is completely dynamic.
- One you are logged in you have access to all the functionalities from the same page.
- And have several resources from your profile. As well as a private intraweb mail.
- We expect the processes will be centered on the communities, so the main exchange may be within each community. We have initially created different communities in a wide scope of interests, such as welcome and how to start, preparing questions to the psysicians, analyzing the information on the internet, specific tools about technology or about healthy lifestyles, relax techniques, social and financtial resources… And different associations have already created their own, such as Klinefelter Syndrome in Chile, Feder Spanish Association of Rare Diseases, or ADIAM Disabilities Association in the Maresme, a zone in Catalonia.
- There’s a general calendar and also an specific one for each community where members can share different events. And, as you can see, resources can be rated.
- Beyond its structure, one of the key aspects of APTIC is the coordination. APTIC has a coordinator which provides 50% of the posts. Among them, the coordinator: Provides users support since the very begging. She puts in contact users according to their (real/possible) interests She also chats with users just to keep in contact. She aswers vey quick when she’s asked about anything. She provides feedback to posters and encourages lurkers. And she provides updated resources every date, at least an event in the calendar or a new link.
- Once we’ve reviewed APTIC’s STRUCTURE, now let’s look at HOW APTIC is used.
- And users do what they want. Now APTIC has around one hundred and sixty users (more than 60% are active members). They fluctuate in their visits according to some dissemination activities we – the APTIC team- do or new resources in the network. And the most common profile is a Spanish mother of a child with a chronic disease, woking in a health care service and engaged in a patients associations in a broad sense. Users do what they want while using APTIC, so it forces us to create and remove in a dynamic way. These are the users, and they 165 users 92% active members 84% women 75% tied to a patients association 50% sanitary professionals 40% gets APTIC per un altre user 30% surfing the internet PROFESSIONALS families COMMON COMMUNITIES associations’ communities 37% of people reaching APTIC log in Evidences of INTERACTION Common communities: Initially APTIC was buit for patients and their families. And now there are more professionals. We though of basing APTIC on tools and resources for associations, but there are more general communities than private communities tied to an specific association. General communities: ‘Welcome’, ‘Diary’, ‘Social and Economic benefits and grants’, ‘Library’, ‘Educative resources’, ‘Technology and disability’, ‘Emotional wellbeing’, ‘Health resources’, ‘Scientific advances’, ‘Among us’. Espai d’Associacions. ^”Professionals”. Associations communities: Espai d’Associacions of Hospital Sant Joan de Déu, FEDER, MPS Spain, ADIAM, Lowe Spain, Klinefelter Chili. There’s evidence of chating, posting in other people’s wall, commenting resources, modifiyng blog posts...
- So that users asks us for continuous adjustments in the platform. For example, 1. We’ve renamed communities with a general content scope. Such as replacing emotional wellbeing title with Take care of yourself to a better care. And we’ve also created new general communities. Such as Questions and Answers, to promote sharing and make more visible the questions/answers within each community. 2. Qüestionaris, comunitats. Indicacions. As the majority of users are health/social professionals, we’ve created communities specially devoted to them. At the same time we’ve adapted initial and impact questionaires to them. 3. Necessitat de loginar-se, qüestionari d’accés i validació, seguiment primeres participacions. Third, the Hospital and Associations asked us for controlling access in order to feel safier. That’s why we designed a brief registration questionnaire prior to geting a username. And we also track posts to prevent from misuses. 4. And finally, we are also carrying on several dissemination activites, such as press notes, a brochure; and promoting APTIC in conferences, meetings, etc.
- OTHER COLLEAGUES HAVE SHOWN THAT IS NOT NECESSARY TO POST TO OBTAIN BENEFITS FROM PARTICIPATION IN THE SOCIAL NETWORK, IT’S ENOUGH LURKING AND PARTICIPATING IN WHAT WE CAN CALL “A PASSIVE WAY”. IN LINE WITH IT, WE’RE CONVINCED THE MOST IMPORTANT THINGS DOES’NT HAPPEN ON THE NET, BUT IN PEOPLES LIFE. And so think about if; After participatin in APTIC People have met offline Have they taken a decision more confidently? Do they feel they are better informed ? Have a better relationship with their health care team? /with their patients? Do they feel more confortable in health caring? Have they experienced a positive change in their lives? Do they feel better ? Do they perceive they have a better control of their lives? We’re working now on how to measure those efectes, and gather evidences of the impact the participation in APTIC has on parents (mainly) and professionals. We’ve prepared some questionaires and personal interviews for that purpose.
- Let’s go back to our main idea. APTIC is an example of leading patients going beyond the walls of their services and looking for new opportunities. And it seems something is moving on. Please read the next sentence of a Health professional at St Joan de Déu paediatric Hospital.
- The answer to this what if question is YES. APTIC will support these services. So Why not using it? pot incloure comunitats pel “maneig” d’una malaltia, si un equip assistencial decideix obrir una comunitat privada i comunicar-se així amb els pacients incloent recomanacions, instruccions, etc (de moment no és informació assistencial, però ho podria ser (?).ara que ho penso, per què no? l’eina ho permetria?...).
- In line with it, we can let our minds think of some possibilities such as: Collect information useful for research about rare diseases (general condition, treatments, etc). Or may be Overcoming barriers among countries putting in contact different nationalities associations. Improve positioning services to facilitate contacts in the physical world through instant messaging. - reminders where and when needes; information about someone interesting for you is near you. 1) Mobile versions that send patients remainders and informations exactly when and where they need. (f.ex. Menjar). Contact among patients associations from different countries. 2) Designing new services on the basis of the real impact on the people, not on the basis of research “results”. 3) There are some professional networks where xxxxx (usually not related to health institutions) answer questions, solve doubts and make suggestions through the net, but now the challenge is having online access to your own health care team, and not whatever team. In sum, turning a threat into a challenge for health care. -------------------------------------------------------------------------------------
- You can contact us for futher information. Thank you.