1. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals HMSP-IDSIM/SIM/0018/2009 Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals João Fonseca MD, PhD jfonseca@med.up.pt João Fonseca MD, PhD jfonseca@med.up.pt

2. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Agenda 1.Opportunity –HMS Portugal initiative to promote health sciences literacy –Motivated multidisciplinary team 2.Context –Healthcare model for chronic diseases –Chronic Diseases of the airways 3.Project – Concept, Aims and Plan 4.Preview – Previous examples and future work 5.Message (so far)

3. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals OPPORTUNITY HMS Portugal Initiative to promote health sciences literacy Motivated multidisciplinary team

4. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals The Team Research Centres Connections with Stakeholders CINTESIS/FM/UP Centro de Investigação em Tecnologias e Sistemas de Informação em Saúde CINTESIS/FM/UP Centro de Investigação em Tecnologias e Sistemas de Informação em Saúde UnifAI/ICBAS/UP Unidade de Investigação e Formação sobre Adultos e Idosos UnifAI/ICBAS/UP Unidade de Investigação e Formação sobre Adultos e Idosos ECS/UM Escola de Ciências da Saúde da Universidade do Minho ECS/UM Escola de Ciências da Saúde da Universidade do Minho APA SPAIC SPP APMCG OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

5. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals The Team Allergy & Asthma Primary Care Medicine Psychiatry Pulmonary Medicine Behavioral change patient education e-health health contents production patient-centered care health professionals training Clinical Background Experience & Skills OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

6. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals CONTEXT Healthcare model for chronic diseases Chronic Diseases of the airways – major public health problem

7. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Clinical information in the Diagnostic-Therapeutic cycle Therapy DataInformation Patient Doctor Decision Action Observation Health Professionals Measurement devices Health Organizations Medical research Patient record Diagnosis Adapted from Van Bemmel J, 2002; Coiera E, 2003; Sullivan S & Wyatt J, 2005 OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

8. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Clinical information flow in chronic diseases Therapy Information Patient DoctorDecision Action Observation Measurement devices Diagnosis Decision Action Observation Adherence Disease state Monitoring Media Peers Internet Fonseca JA, 2007 Improving Information for Asthma Care: The central Role of Patients OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

9. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Chronic Care Model - A paradigm change in healthcare Informed, Activated Patient Productive Interactions Prepared, Proactive Practice Team Outcomes Delivery System Design Decision Support Clinical Information Systems Self- Management Support Health System Resources & Policies Community Health Care Organization Wagner EH, BMJ, 2001; Bodenheimer T, JAMA, 2002 OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

10. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Chronic Diseases of the airways (CDA) Definition –Asthma, COPD (Chronic Obstructive Pulmonary Disease), Rhinitis/Rhinossinusitis, Interstitial lung diseases Common –Inflammation as pathologic mechanism –Environmental risk factors,… Major public health problem globally and locally –Burden –WHO initiative OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

11. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Major public health problem 60% of all deaths are due to chronic diseases –35 000 000 in 2005 Chronic respiratory diseases are on the top 5 causes of mortality in high- income countries WHO CD Report, 2005 OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

12. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals WHO initiative - GARD OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

13. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals THE PROJECT Concept, Aims, Plan

14. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Concept Multimedia Clinical Animations Podcasts Webcasts Multimedia Clinical Animations Podcasts Webcasts Text Wikis Blogs Forums Text Wikis Blogs Forums Tools Shared Decision Action Plan Templates Assessment and Monitoring Decision Support Interactive Guidelines Tools Shared Decision Action Plan Templates Assessment and Monitoring Decision Support Interactive Guidelines General Public Patients and family Physicians The contents and tools will take advantage of the concept and standard technologies of Web 2.0 Web OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

15. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Aim To develop a comprehensive set of contents and tools about chronic diseases of the airways for the general public, patients and the doctors promoting productive interactions between them OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

16. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Timeline Start pending on signing the contract (September 2010?) Project Management Setup & Training Production of Content and Tools Year 1Year 2 M4 M6 OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

17. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Deployment and technologies UMIC/FCCN platform Compliance with standard technologies OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

18. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Content Versions & Formats Public/ people with limited literacy Patients Medical professionals Mostly webcasts or podcasts, written at the 5th grade level Structured articles Moderated Wikis Illustrations Animations Videos Podcasts OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

19. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Some possible tools OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

20. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals PREVIEW – PREVIOUS AND FUTURE WORK Examples of previous work Preview of future work

21. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Production of contents Portuguese Asthma Association www.apa.org.pt 2007-2009 ~300 Articles/News/FAQs/podcasts 16 newsletters 2 self-assessment tools OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

22. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Production of contents Asthma & COPD Promotion of clinical guideline implementation 2008-2009 >150 Articles/News/podcasts about Asthma & COPD 1 Decision-support tool: Ctrl+Asma OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

23. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK Promotion of clinical guideline implementation Asthma control status & therapeutic guidance (GINA 2007)

24. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Decision Support tool eNO.VIS Exhaled Nitric Oxide Values Interpretation System OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

25. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals CARAT Network www.caratnetwork.org OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

26. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals CARAT Network www.caratnetwork.org OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

27. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Preview of future work Major focus on: 1.Disease – Asthma 2.Age group – children/teenagers 3.Risk factors – tobacco smoking OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

28. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals Mapping of Asthma Clinical Guidelines OPPORTUNITY CONTEXT PROJECT PREVIOUS & FUTURE WORK

29. Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals HMSP-IDSIM/SIM/0018/2009 Chronic diseases of the airways Contents and tools for productive interactions between empowered patients and proactive professionals João Fonseca, MD, PhD jfonseca@med.up.pt João Fonseca, MD, PhD jfonseca@med.up.pt Contribution for: improving health science literacy of the Portuguese public Medical/Patient education for a high-burden group of chronic diseases a better healthcare for chronic respiratory diseases Contribution for: improving health science literacy of the Portuguese public Medical/Patient education for a high-burden group of chronic diseases a better healthcare for chronic respiratory diseases