online communities as a vehicle to improving interactions between patients and medical...

“Online communities as a vehicle for improving

interactions between patients and medical professionals: a case study.

Manuel Armayones Ruiz, Ph.DPSiNET Research Group

Internet Interdisciplinary InstituteUniversitat Oberta de Catalunya (UOC)

marmayones@uoc.edu

Vice-president Lowe Syndrome Spanish Association

www.sindromelowe.es

The patients says:

Nothing about us without us!

The professionals says:

Nothing about us without us!

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

Perso

nally

con

trolle

d Hea

lth R

ecor

ds

PCHR’s???

psinet.in3@uoc.edu http://in3.uoc.edu/webs/grups_de_recerca/psinet/

APTICASSOCIACIONS DE

PACIENTS I TIC

• 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?)

Patient’s says us: We don´t want…. (miscellaneous)

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.

Caregivers Network

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....The Network must go to the users!

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?

?

? ?

?

??

?

IF? WH

Y

NO

T?Which is the largest number you can get with three-digit number ?

It’s not 999

is

•Information for: epidemiological databases

•Clinical Trials

•New Treatments

•Drugs

•Neurological development

•Behaviour

•Motor development

•Language development

One example: Lowe Syndrome1:500000.

All togheter we can collect information about.....

WHY N

OT??

Networking or Fragmenting?

Act locallyMy Association

My Hospital

My Doctors

The people I trust.

Think GloballyI authorize my Association/Federation to use my clinical information

I trust in those organization

I contribute with RESEARCH!

•Rellevant information

•Databases

C

O

L

L

A

B

O

R

A

T

I

O

N

¿?

WHY

NOT?

Standarts/Health Policy

•Health System

•Industry

•Research Groups

Standarts/Health Policy

Standarts/Health Policy

Standarts/Health Policy

Standarts/Health Policy

•Clinical Trials

•Treatments

•Drugs

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 of this ship is HOPE)(the name of this ship is HOPE)