Presentation of Workshop on Technology for Healthcare and Healthy Lifestyle 2011 Thursday 1st Dec 2011 Session III http://www.tsb.upv.es/wths2011 También en: http://es.scribd.com/doc/73819171/Presentacion-Dra-Mercedes-Serrano-Guia-Metabolica-conferencia-Ideagoras-2011

1. Empowerment through
Health 2.0 tools in
Inborn Errors of Metabolism
Merche Serrano, MD PhD
Unidad de Enfermedades Metabólicas. H. Sant Joan de Déu
Centro de Investigación Biomédica en Red en Enfermedades
Raras (CIBER-ER)

2. - Very heterogenous group
- More than 500 diseases
Diseñado por Donald E. Nicholson, The University of Leeds,
Inglaterra. http://www.iubmb-nicholson.org/gif/InbornErrors.html

3. IEM Common Characteristics
1. They usually appear early in life, normally during childhood
2. They are considered rare diseases (< 5/10,000)
3. They are chronic, difficult to manage, rare and largely disregarded by
research, the medical community and policy makers.
Aymé S. The Lancet 2008;371:9629
Visitors profile

4. Mediators
E-PATIENTS E-CAREGIVERS
Medical
Staff
Hospital
Medical
Staff

5. Mediators
1. Healthy persons, 30-to-50
years old
E-CAREGIVERS
2. Strong affection
83%
3. Disconcerting situation of
a child suffering a chronic
illness
More participative, involved and committed

6. Resources
Easy-to-
understand
Information for information?
Health Information IEM
AIM 1
To facilitate the access to information
- Quantity
- Quality (easy jargon)

7. Rare diseases, minoritary diseases
AIM 2
To create an interface for people involved in IEM
- contact with professionals and other similar patients,
- offering a platform for developing support groups.

8. Methods We developed a frequently-updated 2.0
website in Spanish

9. Our team
Guiametabolica.org team:
(1) one nutritionist,
(2) one specialist in clinical biochemistry,
(3) one child neurologist,
(4) one mother representing families and Patients’ Associations,
(5) one journalist specialized in social media and the Internet,
(6) one expert in online audiovisual media and webmaster.

10. Target audience
Patients, patients’ families,
patients’ associations, teachers,
friends, physicians, nurses, researchers…

11. Target audience
Considering that Spanish is used on the website
and based on the incidence of IEM.
Target audience 62.000 people

12. Content
(1) Scientific information in simple language about
more than 60 IEMs.

13. Content
(1) Scientific information
in simple language
about clinical more
than 60 IEMs.
(2) More than 70 tips and
recommendations for
daily life

14. Content
(1) Scientific information in simple
language about clinical more than
60 IEMs.
(2) More than 70 tips and
recommendations for daily life
(3) 160 specific recipes for
controlled diets (proteins,
carbohydrates, fat)
(4) 16 complete menus

15. Content
(1) Scientific information in simple language about clinical more than 60 IEMs.(2) More than 70
tips and recommendations for daily life (3) 160 specific recipes for controlled diets (proteins,
carbohydrates, fat) (4) 16 complete menus
(5) Translated abstracts of more than 200 articles with scientific
contents and medical advances, as well as monographic articles about
medical issues.

16. Content
Geolocated resources

17. Content
Stories and games

18. Comment field
Medical/nutritional Supervised by our
questions Medical/Nutritional
staff
Share experiences
among families

19. Newsletter
Every month, a newsletter is
published and sent

20. Results
From May 1, 2010 to October 31, 2011
we registered 157,830 visits
from more than 100 countries/territories
456,993 page views,
with an average time on the site of 3:02 minutes
More than 60% of the visitors came from different parts of the Western
Hemisphere, especially Latin America

21. Map view of Guiametabolica.org (Google Analytics, Nov 18)

22. Comment field
On average, 9 weekly consultations
Total of 495 comments
Requests to contact other parents represent 8.9% of the
comments

23. Preliminary evaluation of impact
75 completed questionnaires;
73% users visit Guiametabolica at least 1/week,
34% regularly write comments/questions
83% 8% 5%
e-caregivers health professionals e-patients

24. Preliminary evaluation of impact
Changes in daily life and feelings
Discovered new information or increase their knowledge___________96.5%
Changed or developed at least one new habit____________________51.8%
Do we offer new
information?
We present information
Acknowledged that they felt less lonely___________________76.4%
↓ Feelings of loneliness
Realized that they were doing well when getting in touch with othersjargon same
in easy in the
↑ Self-efficacy
situation_______________________________________69.1%
↓ Level of self-criticism
⇑ Empowerment

25. Conclusion
Disparitities in
Poor Real and perceived
understanding
communication health status
of disease Empowerment
As a complement to more traditional professional approaches, consider specific IEM
websites, specially 2.0 tools and online support groups.
Their contribution lies in the effect they have on people’s general well-being while not
interfering with traditional care.