Manuel Armayones Ruiz, Ph.D PSiNET Research Group Internet Interdisciplinary Institute

Transcription

1 Online 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) Vice president Lowe Syndrome Spanish Association marmayones@uoc.edu

2

3

4

5 The patients says: Nothing about us without us!

6

7

8

9

10

11 The professionals says: Nothing about us without us!

12

13

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

15

16

17

18

19

20

21 APTIC ASSOCIACIONS DE PACIENTS I TIC psinet.in3@uoc.edu

22

23

24

25 Patient s says us: We don t want. (miscellaneous) Facebook 2 (privacy, visibility, access) To be only a experiment for the Hospital and your University. To much information, we can t process We need actions not only ideas A standard commercial platform. we want to collaborate in the design and decide about the privacy of our information, tools and sections. Cloud computation we want the database in our Hospital server, like PHR. Expend a lot of money, we have priorities (research, emotional support, etc) Lost our association identity (if our associates go to networks what about our association?)

26 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 kids) To collaborate with our doctors (is very common in patients association s we have our friends and supportive doctors ) Resources, training and help to evaluate health information (internet, and the rest of social media.tv, newspapers) Automatic tools in the platform (reminder activities, automatic messages) Easy, easy and. easy to use and to maintain!. Not only technical information we need to share vital experiences Personalized platform (different styles for different associations) A platform for the families, to share our fears and our hopes More videos and lees pdf s A place to be oneself, to feel confident and empowered and to share daily life tips.

27 Caregivers Network

28

29

30

31 We work with patient s association...because They/We have previous created structures We can tailored the network to different associations (focus groups,deep interviews, Usability test, pilot test) They/We have well defined Objectives. They/We have management experiences. They/We have easy access to specialized professionals And The doctors nurses psychologist...there are in the Hospital, in St.Joan de Déu the Patients Associations...We are TOO!... If the users..don t go to the Network...Thee Network must go to the users!

32 Just now we are act locally, but why not we cant think globally? That way we could contribute to Research about Rare Disease? That way we could combine the locally with the globally dimension?

33 Which is the largest number you can get with three digit number? It s not 999 is

34 One example: Lowe Syndrome 1: Networking or Fragmenting? All togheter we can collect information about... Neurological development Behaviour Motor development Language development Information for: epidemiological databases Clinical Trials New Treatments Drugs

35 C O Standarts/Health Policy Standarts/Health Policy Standarts/Health Policy Rellevant information Databases L L A B O Standarts/Health Policy Health System Industry Research Groups R A T Act locally My Association My Hospital My Doctors The people I trust. Standarts/Health Policy Think Globally I authorize my Association/Federation to use my clinical information n I trust in those organization I contribute with RESEARCH! Clinical Trials Treatments Drugs I O N?

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 thi is ship is HOPE)