Online communities as a vehicle to improving interactions between patients and medical professionals: a case study
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![โ O nline communities as a vehicle for improving interactions between patients and medical professionals: a case study. Manuel Armayones Ruiz, Ph.D PSiNET Research Group Internet Interdisciplinary Institute Universitat Oberta de Catalunya (UOC) โ [email_address] Vice-president Lowe Syndrome Spanish Association www.sindromelowe.es](https://image.slidesharecdn.com/presentacinarmayones-100312071756-phpapp01/85/Online-communities-as-a-vehicle-to-improving-interactions-between-patients-and-medical-professionals-a-case-study-1-320.jpg)
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Online communities as a vehicle to improving interactions between patients and medical professionals: a case study
- 1. โ O nline communities as a vehicle for improving interactions between patients and medical professionals: a case study. Manuel Armayones Ruiz, Ph.D PSiNET Research Group Internet Interdisciplinary Institute Universitat Oberta de Catalunya (UOC) โ [email_address] Vice-president Lowe Syndrome Spanish Association www.sindromelowe.es
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- 14. The GAP: Where is my Doctor? Where is my Hospital? Where is my Health System? The Bridge: Work locally (doctors, hospital, patientโs association) Think globally: my information can contribute with RESEARCH
- 15. Personally controlled Health Records PCHRโs???
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- 21. [email_address] http://in3.uoc.edu/webs/grups_de_recerca/psinet/ AP TIC ASSOCIACIONS DE PACIENTS I TIC
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- 33. IF? WHY NOT? Which is the largest number you can get with three-digit number ? Itโs not 999 is
- 36. Patients Say:Nothing about us without us! Professionals Says:Nothing about us without us! + All about us with us!
- 37. The future belongs to those who believe in the beauty of their dreams. E.Roosevelt Thanks for your attention! (the name of this ship is HOPE)
Editor's Notes
- Online communities as a vehicle for improving interactions between patients and medical professionals: a case study. Our case is in their first steps. We think that the most important itโs to explain witch is our theoretical approach.
- There are another wonderful initiatives like patientslikeme, promoted by a family with a soon/brother with a rare disease
- I go to patientslikemeโฆwellโฆIโm alone with a lot of unknow people..where is my hospital, my doctor, my public health systemโฆthere are evidencesโฆwhy not my public health system working with federationsโฆdonโt provide me a tool??? Perhaps in my Hospital they can inform meโฆโespacio de asociacionesโโฆperhaps they can help me to โmind the gatโ betterโฆ..to avoid the gapโฆ.perhaps they are the bridgeโฆwhy not??
- Personally controlled Health Recordsโฆ.the patient can updated informationโฆNEW REVOLUTION??? See last www.jmir.org It will be amazingโฆbut dangerous..with a lot of resistances between staffs.
- Something is changingโฆpatients and doctors working togheter
- And generating new knowledgeโฆ..doctors knows mutationโฆwe can monitoring day by day behaviours in ours soon
- Itโs not only โpsychologyโโฆitโs biomedical research tooโฆโฆ(I was in this workshop with WHO,Eurordis,Orphanet
- There are Cochranne evidence aboutโฆ..was 2003!!!
- We canโt work aloneโฆ.we are collaborating with different institutions. With some institutions we maintain a active and applied relation, with others we ask for advice, to share informationโฆ.maintaining dialogues waysโฆItโs important tooโฆ
- The are our boss
- Twin platform of APTICโฆnow itโs runningโฆ
- I have a profile..mashup with Youtube, Google Maps, Twitterโฆwhy not?...And FREEโฆdo you need a computer and one informaticsโฆ(perhaps our informatic in the associationโฆ.why not?)โฆand really one person can create a network in two hoursโฆin your server not โon the cloudsโ (NING)
- OPEN SOURCEโฆ.very very cheaperโฆand sometimes free if you can involve NGO, non profit organizations,etc
- We work with associationsโฆbecause we work to generate critical massโฆ.alone we are 6 in SpainโฆAll togheter we are 3 millions. The association are the โnatural groupโ with objective and structure. We are stakeholdersโฆwhe we are alone we are only โhysteric parents of broken kidsโ
- Yesโฆbut If I have a problem I build a social networkโฆ.too easyโฆwe need moreโฆin which manner we can combineโฆ.โpsychological aspectsโ with โbiomedical researchโ??
- Sometime we thing with a โrationalโ strategyโฆbutโฆ.perhaps we have more potentialโฆto change the worldโฆperhaps not now, not for our lifetime, butโฆ.why not to try?
- Aglayaโฆte acuerdas del Mind the Gap??? For Lowe Syndrome I know a lot of networksโฆbut inside we โdonโt workโโฆwonderful to share butโฆ.something more??? Or only we can see, be quiet and waitโฆ???? Now we are fragmentingโฆ.perhaps we have more platform than boys with LS!!!!
- Local networks (hospital, association, Catalonia, Espaรฑaโฆ.) building with โstandarsโ for different diseasesโฆWe can use โdaily informationโ, symptoms, mood, monitoring effect of drugs, infoepidemiologyโฆall tha we can thinkโฆ..with the collaboration of initiatives like google health, vault, MSNโฆ(why not mash-upโs)โฆsocial visibility, social marketingโฆwith a control of privacy (by health autorities)โฆcorporate social responsibilityโฆ.There are wonderful examples of wonderful initivativesโฆwith a great potential โฆ.(Genetic Alliance) that anybody knows (Alex yes Aglayaโฆ Sharon Terry, MAย CEO and mother of 2 daugthers with rares diseases โฆ. http://www.geneticalliance.org/ws_display.asp?filter=about
- Yes,we can, Yes we must!