Empowerment through               Health 2.0 tools in     Inborn Errors of Metabolism                           Merche Ser...
- Very heterogenous group                                                                   - More than 500 diseasesDiseña...
IEM Common Characteristics1. They usually appear early in life, normally during childhood2. They are considered rare disea...
MediatorsE-PATIENTS   E-CAREGIVERS                            Medical                             Staff                   ...
Mediators                             1. Healthy persons, 30-to-50                             years old            E-CARE...
Resources                                                    Easy-to-                                                    u...
Rare diseases, minoritary diseases AIM 2 To create an interface for people involved in IEM         - contact with professi...
Methods   We developed a frequently-updated 2.0          website in Spanish
Our teamGuiametabolica.org team:(1) one nutritionist,(2) one specialist in clinical biochemistry,(3) one child neurologist...
Target audiencePatients, patients’ families,patients’ associations, teachers,friends, physicians, nurses, researchers…
Target audienceConsidering that Spanish is used on the websiteand based on the incidence of IEM.Target audience           ...
Content    (1) Scientific information in simple language about    more than 60 IEMs.
Content(1) Scientific information    in simple language    about clinical more    than 60 IEMs.(2) More than 70 tips and  ...
Content(1) Scientific information in simple     language about clinical more than     60 IEMs.(2) More than 70 tips and   ...
Content(1) Scientific information in simple language about clinical more than 60 IEMs.(2) More than 70tips and recommendat...
ContentGeolocated resources
Content      Stories and games
Comment field     Medical/nutritional     Supervised by our     questions             Medical/Nutritional                 ...
Newsletter Every month, a newsletter is published and sent
Results From May 1, 2010 to October 31, 2011                 we registered 157,830 visits                 from more than 1...
Map view of Guiametabolica.org (Google Analytics, Nov 18)
Comment field On average, 9 weekly consultations Total of 495 comments Requests to contact other parents represent 8.9% of...
Preliminary evaluation of impact 75 completed questionnaires; 73% users visit Guiametabolica at least 1/week, 34% regularl...
Preliminary evaluation of impactChanges in daily life and feelingsDiscovered new information or increase their knowledge__...
Conclusion                      Disparitities in    Poor                                     Real and perceived           ...
Mercedes Serrano -  Guía metabólica: empowerment through health 2.0 tools in inborn errors of metabolism
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Mercedes Serrano - Guía metabólica: empowerment through health 2.0 tools in inborn errors of metabolism

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Presentation of Workshop on Technology for Healthcare and Healthy Lifestyle 2011

Thursday 1st Dec 2011
Session III

http://www.tsb.upv.es/wths2011

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http://es.scribd.com/doc/73819171/Presentacion-Dra-Mercedes-Serrano-Guia-Metabolica-conferencia-Ideagoras-2011

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Mercedes Serrano - Guía metabólica: empowerment through health 2.0 tools in inborn errors of metabolism

  1. 1. Empowerment through Health 2.0 tools in Inborn Errors of Metabolism Merche Serrano, MD PhDUnidad de Enfermedades Metabólicas. H. Sant Joan de DéuCentro de Investigación Biomédica en Red en Enfermedades Raras (CIBER-ER)
  2. 2. - Very heterogenous group - More than 500 diseasesDiseñado por Donald E. Nicholson, The University of Leeds,Inglaterra. http://www.iubmb-nicholson.org/gif/InbornErrors.html
  3. 3. IEM Common Characteristics1. They usually appear early in life, normally during childhood2. They are considered rare diseases (< 5/10,000)3. They are chronic, difficult to manage, rare and largely disregarded byresearch, the medical community and policy makers. Aymé S. The Lancet 2008;371:9629 Visitors profile
  4. 4. MediatorsE-PATIENTS E-CAREGIVERS Medical Staff Hospital Medical Staff
  5. 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. 6. Resources Easy-to- understand Information for information? Health Information IEM AIM 1 To facilitate the access to information - Quantity - Quality (easy jargon)
  7. 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. 8. Methods We developed a frequently-updated 2.0 website in Spanish
  9. 9. Our teamGuiametabolica.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. 10. Target audiencePatients, patients’ families,patients’ associations, teachers,friends, physicians, nurses, researchers…
  11. 11. Target audienceConsidering that Spanish is used on the websiteand based on the incidence of IEM.Target audience 62.000 people
  12. 12. Content (1) Scientific information in simple language about more than 60 IEMs.
  13. 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. 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. 15. Content(1) Scientific information in simple language about clinical more than 60 IEMs.(2) More than 70tips 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 scientificcontents and medical advances, as well as monographic articles aboutmedical issues.
  16. 16. ContentGeolocated resources
  17. 17. Content Stories and games
  18. 18. Comment field Medical/nutritional Supervised by our questions Medical/Nutritional staff Share experiences among families
  19. 19. Newsletter Every month, a newsletter is published and sent
  20. 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. 21. Map view of Guiametabolica.org (Google Analytics, Nov 18)
  22. 22. Comment field On average, 9 weekly consultations Total of 495 comments Requests to contact other parents represent 8.9% of the comments
  23. 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. 24. Preliminary evaluation of impactChanges in daily life and feelingsDiscovered 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 informationAcknowledged that they felt less lonely___________________76.4% ↓ Feelings of lonelinessRealized that they were doing well when getting in touch with othersjargon same in easy in the ↑ Self-efficacysituation_______________________________________69.1% ↓ Level of self-criticism ⇑ Empowerment
  25. 25. Conclusion Disparitities in Poor Real and perceived understandingcommunication health status of disease EmpowermentAs a complement to more traditional professional approaches, consider specific IEMwebsites, specially 2.0 tools and online support groups.Their contribution lies in the effect they have on people’s general well-being while notinterfering with traditional care.
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