“ O nline communities as a vehicle for improving interactions between patients and medical professionals:  a case study. M...
 
 
 
<ul><li>The patients says: </li></ul><ul><li>Nothing about us without us! </li></ul>
 
 
 
 
 
<ul><li>The professionals says: </li></ul><ul><li>Nothing about us without us! </li></ul>
 
 
The GAP: Where is my Doctor? Where is my Hospital? Where is my Health System? The Bridge: Work locally (doctors, hospital,...
Personally controlled Health Records PCHR’s???
 
 
 
 
 
[email_address] http://in3.uoc.edu/webs/grups_de_recerca/psinet/ AP TIC ASSOCIACIONS DE PACIENTS I TIC
 
 
 
<ul><li>Facebook 2 (privacy, visibility, access) </li></ul><ul><li>To be only a “experiment” for the Hospital and your Uni...
Patient’s says us: We want…. (miscellaneous) <ul><li>To be a source of knowledge for the Hospital (“we are experts in suff...
Caregivers Network
 
 
 
We work with patient’s association...because <ul><li>They/We have previous created structures </li></ul><ul><li>We can tai...
<ul><li>Just now we are act locally, but why not we cant think globally? </li></ul><ul><li>That way we could contribute to...
IF? WHY NOT? Which is the largest number you can get with  three-digit number ?   It’s not 999 is
<ul><li>Information for: epidemiological databases </li></ul><ul><li>Clinical Trials </li></ul><ul><li>New Treatments </li...
Act locally My Association My Hospital My Doctors The people I trust. Think Globally I authorize my Association/Federation...
Patients Say:Nothing about us without us! Professionals Says:Nothing about us without us! + All  about  us  with  us!
The future belongs to those who believe in the beauty of their dreams.  E.Roosevelt Thanks for your attention! (the name o...
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Online communities as a vehicle to improving interactions between patients and medical professionals: a case study

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  • 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 it’s 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 patientslikeme…well…I’m alone with a lot of unknow people..where is my hospital, my doctor, my public health system…there are evidences…why not my public health system working with federations…don’t provide me a tool??? Perhaps in my Hospital they can inform me…”espacio de asociaciones”…perhaps they can help me to “mind the gat” better…..to avoid the gap….perhaps they are the bridge…why not??
  • Personally controlled Health Records….the patient can updated information…NEW REVOLUTION??? See last www.jmir.org It will be amazing…but dangerous..with a lot of resistances between staffs.
  • Something is changing…patients and doctors working togheter
  • And generating new knowledge…..doctors knows mutation…we can monitoring day by day behaviours in ours soon
  • It’s not only “psychology”…it’s biomedical research too……(I was in this workshop with WHO,Eurordis,Orphanet
  • There are Cochranne evidence about…..was 2003!!!
  • We can’t work alone….we are collaborating with different institutions. With some institutions we maintain a active and applied relation, with others we ask for advice, to share information….maintaining dialogues ways…It’s important too…
  • The are our boss
  • Twin platform of APTIC…now it’s running…
  • I have a profile..mashup with Youtube, Google Maps, Twitter…why not?...And FREE…do you need a computer and one informatics…(perhaps our informatic in the association….why not?)…and really one person can create a network in two hours…in your server not “on the clouds” (NING)
  • OPEN SOURCE….very very cheaper…and sometimes free if you can involve NGO, non profit organizations,etc
  • We work with associations…because we work to generate critical mass….alone we are 6 in Spain…All togheter we are 3 millions. The association are the “natural group” with objective and structure. We are stakeholders…whe we are alone we are only “hysteric parents of broken kids”
  • Yes…but If I have a problem I build a social network….too easy…we need more…in which manner we can combine….”psychological aspects” with “biomedical research”??
  • Sometime we thing with a “rational” strategy…but….perhaps we have more potential…to change the world…perhaps not now, not for our lifetime, but….why not to try?
  • Aglaya…te acuerdas del Mind the Gap??? For Lowe Syndrome I know a lot of networks…but inside we “don’t work”…wonderful to share but….something more??? Or only we can see, be quiet and wait…???? Now we are fragmenting….perhaps we have more platform than boys with LS!!!!
  • Local networks (hospital, association, Catalonia, España….) building with “standars” for different diseases…We can use “daily information”, symptoms, mood, monitoring effect of drugs, infoepidemiology…all tha we can think…..with the collaboration of initiatives like google health, vault, MSN…(why not mash-up’s)…social visibility, social marketing…with a control of privacy (by health autorities)…corporate social responsibility….There are wonderful examples of wonderful initivatives…with a great potential ….(Genetic Alliance) that anybody knows (Alex yes Aglaya… Sharon Terry, MA  CEO and mother of 2 daugthers with rares diseases …. http://www.geneticalliance.org/ws_display.asp?filter=about
  • Yes,we can, Yes we must!
  • Online communities as a vehicle to improving interactions between patients and medical professionals: a case study

    1. 1. “ 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) ‏ [email_address] Vice-president Lowe Syndrome Spanish Association www.sindromelowe.es
    2. 5. <ul><li>The patients says: </li></ul><ul><li>Nothing about us without us! </li></ul>
    3. 11. <ul><li>The professionals says: </li></ul><ul><li>Nothing about us without us! </li></ul>
    4. 14. The GAP: Where is my Doctor? Where is my Hospital? Where is my Health System? The Bridge: Work locally (doctors, hospital, patient’s association) Think globally: my information can contribute with RESEARCH
    5. 15. Personally controlled Health Records PCHR’s???
    6. 21. [email_address] http://in3.uoc.edu/webs/grups_de_recerca/psinet/ AP TIC ASSOCIACIONS DE PACIENTS I TIC
    7. 25. <ul><li>Facebook 2 (privacy, visibility, access) </li></ul><ul><li>To be only a “experiment” for the Hospital and your University. </li></ul><ul><li>To much information, we can’t “process” </li></ul><ul><li>We need actions…not only ideas </li></ul><ul><li>A “standard”-commercial platform…. we want to collaborate in the design and decide about the privacy of our information, tools and sections. </li></ul><ul><li>“ Cloud computation”…we want the database in our Hospital server, like PHR. </li></ul><ul><li>Expend a lot of money, we have priorities… (research, emotional support, etc) </li></ul><ul><li>Lost our association identity (if our associates go to networks…what about our association?) </li></ul>Patient’s says us: We don´t want…. (miscellaneous)
    8. 26. Patient’s says us: We want…. (miscellaneous) <ul><li>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 kids) </li></ul><ul><li>To collaborate with our doctors (is very common in patients association’s…we have our “friends and supportive doctors”) </li></ul><ul><li>Resources, training and help to evaluate health information (internet, and the rest of social media….TV, newspapers) </li></ul><ul><li>“ Automatic tools in the platform (reminder activities, automatic messages) </li></ul><ul><li>Easy, easy and…. easy to use and to maintain!. </li></ul><ul><li>Not only “technical information” we need to share “vital experiences” </li></ul><ul><li>Personalized platform (different styles for different associations) </li></ul><ul><li>A platform for the families, “to share our fears and our hopes” </li></ul><ul><li>More videos and lees “pdf’s” </li></ul><ul><li>A place to be oneself, to feel confident and empowered and to share daily life tips . </li></ul>
    9. 27. Caregivers Network
    10. 31. We work with patient’s association...because <ul><li>They/We have previous created structures </li></ul><ul><li>We can tailored the network to different associations (focus groups,deep interviews, Usability test, pilot test) </li></ul><ul><li>They/We have well defined Objectives. </li></ul><ul><li>They/We have management experiences. </li></ul><ul><li>They/We have easy access to specialized professionals </li></ul><ul><li>And…The doctors-nurses-psychologist...there are in the Hospital, in St.Joan de Déu……… the Patients Associations...We are TOO!..... </li></ul><ul><li>If the users..don’t go to the Network....The Network must go to the users! </li></ul>
    11. 32. <ul><li>Just now we are act locally, but why not we cant think globally? </li></ul><ul><li>That way we could contribute to Research about Rare Disease? </li></ul><ul><li>That way we could combine the “locally” with the “globally” dimension? </li></ul>? ? ? ? ? ? ?
    12. 33. IF? WHY NOT? Which is the largest number you can get with three-digit number ? It’s not 999 is
    13. 34. <ul><li>Information for: epidemiological databases </li></ul><ul><li>Clinical Trials </li></ul><ul><li>New Treatments </li></ul><ul><li>Drugs </li></ul><ul><li>Neurological development </li></ul><ul><li>Behaviour </li></ul><ul><li>Motor development </li></ul><ul><li>Language development </li></ul>One example: Lowe Syndrome 1:500000. All togheter we can collect information about..... WHY NOT?? Networking or Fragmenting?
    14. 35. Act locally My Association My Hospital My Doctors The people I trust. Think Globally I authorize my Association/Federation to use my clinical information I trust in those organization I contribute with RESEARCH! <ul><li>Rellevant information </li></ul><ul><li>Databases </li></ul>C O L L A B O R A T I O N ¿? WHY NOT? Standarts/Health Policy <ul><li>Health System </li></ul><ul><li>Industry </li></ul><ul><li>Research Groups </li></ul>Standarts/Health Policy Standarts/Health Policy Standarts/Health Policy Standarts/Health Policy <ul><li>Clinical Trials </li></ul><ul><li>Treatments </li></ul><ul><li>Drugs </li></ul>
    15. 36. Patients Say:Nothing about us without us! Professionals Says:Nothing about us without us! + All about us with us!
    16. 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)

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