Collective intelligence for research in ultra rare diseases
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Transcript of Collective intelligence for research in ultra rare diseases
ePACIBARD: Collective Intelligence for research in ultra rare diseases.
A conceptual model.
Manuel ArmayonesBeni Gómez-Zúñiga
Modesta PousadaBegoña Nafría
Mercedes Serrano
November 29, 2012 IV Workshop on Technology for Healthcare and Healthy Lifestyle
Ultra-rare diseases
The estimated prevalence of Lower syndrome in the general population is approximately 1 case in 500,000 births.
For the majority of rare diseases affecting less than 1 person in 10 000, therapeutic research is absent or very limited.
Ultra-rare diseases
Research on a very few of these diseases
A very limited number of patients
Hopelessness and psychological distresss
Research on ultra-rare diseases
Towards more collaborative models:patientspatients associationscaregiversphysiciansresearchersindustry
and so on…
Research on rare or ultra-rare diseases
Collaborative ModelsWorking togheter
Collective Intelligence
Psychological effects
Psychological dispairStressDepressionLack of therapeutic
hopeNo support for
everyday lifeIsolation
Four objectives
1.-Improving medical-scientific knowledge of rare diseases
2.- Intervening on the psychological wellbeing of patients and caregivers
3.- Promoting dissemination and awareness about rare diseases
4.- Promoting sustainability of research projects
the role of patients is changing from a passive to an active one
e-Patient
• with informational skills
• positive attitude• the most active
group of patients in Internet
The e-Patients potential in the biomedical research
Positive psychological effect on patients and caregivers
Thanks to Web 2.0
New forms of collective intelligence
Patients and families improving and enriching research
Our team:6 expert doctors5 psychologists2 clinical
biochemists1 geneticist1 journalist1 computer
specialist10 families
Our first results:
More than 70 molecular studies
We are evaluating quality of life and empowerment with validated scales
Our conceptual model...
...becomes a new research path based in collaboration between patients and researchers. This collaboration will be a powerful source not only for research itself, but also a good strategy for the empowerment of patients and their families. Progress will come from collaborative work among all health actors, and an extreme use of new technologies to generate knowledge.