• Share
  • Email
  • Embed
  • Like
  • Save
  • Private Content
Empowerment through  Health 2.0 tools in Inborn Errors of Metabolism
 

Empowerment through Health 2.0 tools in Inborn Errors of Metabolism

on

  • 926 views

Presentation by Dr. Merche Serrano, Metabolic Unit at Hospital Sant Joan de Déu - Barcelona and the Center for Biomedical Research on Rare Diseases Network (CIBER-ER) regarding the website Guía ...

Presentation by Dr. Merche Serrano, Metabolic Unit at Hospital Sant Joan de Déu - Barcelona and the Center for Biomedical Research on Rare Diseases Network (CIBER-ER) regarding the website Guía metabólica (http://www.guiametabolica.org ) and the process of empowerment that is occurring with people who take care of children affected by an inborn error of metabolism.

Statistics

Views

Total Views
926
Views on SlideShare
914
Embed Views
12

Actions

Likes
0
Downloads
0
Comments
0

1 Embed 12

http://paper.li 12

Accessibility

Upload Details

Uploaded via as Microsoft PowerPoint

Usage Rights

CC Attribution-NonCommercial-NoDerivs LicenseCC Attribution-NonCommercial-NoDerivs LicenseCC Attribution-NonCommercial-NoDerivs License

Report content

Flagged as inappropriate Flag as inappropriate
Flag as inappropriate

Select your reason for flagging this presentation as inappropriate.

Cancel
  • Full Name Full Name Comment goes here.
    Are you sure you want to
    Your message goes here
    Processing…
Post Comment
Edit your comment

    Empowerment through  Health 2.0 tools in Inborn Errors of Metabolism Empowerment through Health 2.0 tools in Inborn Errors of Metabolism Presentation Transcript

    • Merche Serrano, MD PhD (@serranogimare) Unidad de Enfermedades Metabólicas. H. Sant Joan de Déu Centro de Investigación Biomédica en Red en Enfermedades Raras (CIBER-ER) Empowerment through Health 2.0 tools in Inborn Errors of Metabolism
      • - V ery heterogenous group
        • - More than 500 diseases
      Diseñado por Donald E. Nicholson, The University of Leeds, Inglaterra. http://www.iubmb-nicholson.org/gif/InbornErrors.html
    • 1. They u sually appear early in life, normally during childhood 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 2. They are considered rare diseases (< 5/10,000) Visitors profile IEM Common Characteristics
    • Mediators E-PATIENTS Medical Staff E-CAREGIVERS Personal Sanitario Hospital
    • 83% Mediators 2. Strong affection 3. D isconcerting situation of a child suffering a chronic illness 1. Healthy persons, 30-to-50 years old More participative, involved and committed E-CAREGIVERS
    • Resources Health Information Information for IEM Easy-to-understand information?
      • AIM 1
      • To facilitate the access to information
      • - Quantity
      • Quality ( easy jargon )
    • Rare diseases, minoritary diseases “ Regarding rare diseases, Social Media its almost the only way to socialize” @armayones 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.
    • We developed a frequently-updated 2.0 website in Spanish Methods
    • Our team
      • Guiametabolica.org team:
      • 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.
    • Patients, patients’ families, patients’ associations, professionals, teachers, friends, physicians, nurses, researchers… Target audience
    • Considering that Spanish is used on the website and based on the incidence of IEM. Target audience 62.000 people Target audience
    • Contents (1) Scientific information in simple language about clinical more than 60 IEMs.
      • Scientific information in simple language about clinical more than 60 IEMs.
      • (2) More than 70 tips and recommendations for daily life
      Contents
    • (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 Contents
    • (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. Contents
    • Geolocated resources Contents
    • Stories and games Contents
    • Comment field Share experiences among families Medical/nutritional questions Supervised by our Medical/Nutritional staff
    • Every month, a newsletter is published and sent Newsletter
    • Results From May 1, 2010 to October 31, 2011 we registered 157,830 visits from more than 100 countries/territories 399,298 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
    • Map view of Guiametabolica.org (Google Analytics, Nov 18)
    • On average, 9 weekly consultations Total of 495 comments Requests to contact other parents represent 8.9% of the comments Comment field
    • Preliminary evaluation of impact 75 completed questionnaires; 73% users visit Guiametabolica at least 1/week, 34% regularly write comments/questions 80% 8% 5% e-caregivers health professionals e-patients
    • 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% Acknowledged that they felt less lonely ___________________ 76.4% Realized that they were doing well when getting in touch with others in the same situation _______________________________________ 69.1% Do we offer new information? We present information in easy jargon
      •  Feelings of loneliness
      • Auto-eficacy
      • Level of self-criticism
              •  Empowerment
      Preliminary evaluation of impact
    • Conclusiones 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. Poor communication Disparitities in understanding of disease Real and perceived health status Empowerment
    • Reflections Growth is the essence of pediatrics What is exactly growth? The majority of IEM do not have curative treatments Then, doctors’ role is taken care of them
    • http://www.guiametabolica.org