O nline communities as a vehicle for improving“Online communities as a vehicle for improving...

“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) 

marmayones@uoc.edu 

Vice­president Lowe Syndrome Spanish Association 

www.sindromelowe.es 

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) 

president Lowe Syndrome Spanish Association 

www.sindromelowe.es

The patients says: Nothing about us without us! 

The patients says: Nothing about us without us!

The professionals 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

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

APTIC ASSOCIACIONS DE

PACIENTS I TIC

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

TIC ASSOCIACIONS 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) 

To be only a “experiment” for the Hospital and your University. 

To much information, we can’t “process” 

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 

Expend a lot of money, we have priorities… (research, emotional support, 

Lost our association identity (if our associates go to networks…what about 

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)

ü To collaborate with our doctors (is very common in patients association’s…we have our “friends and supportive doctors”)

ü Resources, training and help to evaluate health information (internet, and the rest of social media….TV, newspapers)

ü “Automatic tools in the platform (reminder activities, automatic messages)

ü Easy, easy and…. easy to use and to maintain!.

ü Not only “technical information” we need to share “vital experiences”

ü Personalized platform (different styles for different associations)

ü A platform for the families, “to share our fears and our hopes”

ü More videos and lees “pdf’s”

ü A place to be oneself, to feel confident and empowered and to share daily life tips

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

Resources, training and help to evaluate health information (internet, and the rest of social media….TV,

“Automatic tools in the platform (reminder activities, automatic messages)

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”

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 doctors­nurses­psychologist...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! 

We work with patient’s association...because 

They/We have previous created structures 

We can tailored the network to different associations  (focus groups,deep 

They/We have management experiences. 

They/We have easy access to specialized professionals 

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? 

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?

Which is the largest number you can get with 

It’s not 999 

is 

Which is the largest number you can get with three­digit number ? 

999

One example: Lowe Syndrome 1:500000. 

Networking or Fragmenting? 

•Information for: epidemiological databases 

•Clinical Trials 

•New Treatments 

•Drugs 

•Neurological development 

•Behaviour 

•Motor development 

•Language development 

One example: Lowe Syndrome 1:500000.  All togheter we can 

collect information about..... Networking or Fragmenting?

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! 

Standarts/Health Policy 

Standarts/Health Policy 

Standarts/Health Policy 

Standarts/Health Policy 

Standarts/Health Policy 

I authorize my Association/Federation to use my clinical information 

•Rellevant information 

•Databases 

C 

O 

L 

L 

A 

B 

O 

R 

A 

T 

I 

O 

N 

¿ ? 

•Health System 

•Industry 

•Research Groups 

•Clinical Trials 

•Treatments 

•Drugs

Patients Say:Nothing about us without us! 

Professionals Says:Nothing about us without us! + 

All about us 

Patients Say:Nothing about us without us! 

Professionals Says:Nothing about us without us! + 

us with us!

The future belongs to those who believe in the beauty of their dreams. 

Thanks for your attention! 

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

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)