1 St Jude International Outreach Program

• 1 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Childhood Cancers – Cure Rates 80% Survival Rates in Developed Countries St. Jude Children’s 2 Research Hospital

Childhood Cancers – Cure Rates 0 -30% Rates in countries with limited resources 3

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International Visitors to St. Jude Dr. Georgette Chammas with International Visitors 5 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Donations of Hospital Infrastructure Dr. Barrett Haik with a donation of a Retcam to Guatemala 6

www. Cure 4 Kids. org 7

Objectives of Cure 4 Kids • Provide online education on catastrophic diseases in children to doctors, nurses, health care providers, patients and families. • Provides for group communication tools for users of Cure 4 Kids anytime, anywhere. • Provide assistance for Internet connectivity to partner sites. 8 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Cure 4 Kids Global Usage Statistics 9

Cure 4 Kids Usage Statistics 10

1550 Users from 82 Countries 519 United States 181 Brazil 105 Mexico 57 Venezuela 50 Chile 38 Russia 32 El Salvador 32 Lebanon 31 Peru 31 Colombia 29 Canada 28 Jordan 25 Argentina 22 China 21 Morocco 21 Spain 17 Japan 16 Guatemala 13 Ecuador 12 Romania 10 Costa Rica 10 United Kingdom 9 Honduras 8 Philippines 7 India 7 Paraguay 7 Netherlands 6 Panama 6 Ireland 6 Zimbabwe 5 Syria 5 Iran 5 Saudi Arabia 5 Qatar 5 Egypt 5 South Africa 5 Australia 4 Bolivia 4 Ukraine 4 Nicaragua 4 Italy 4 Uruguay 4 Singapore 4 Sweden 4 Iraq 3 Armenia 3 Germany 3 Hong Kong 3 Taiwan 3 France 3 Israel 3 Czech Republic 2 Malta 2 Albania 2 Dominican Republic 2 Cuba 2 Latvia 2 Croatia 2 Pakistan 1 Switzerland 1 Malaysia 1 Tunisia 1 Madagascar 1 Midway Islands 1 Bulgaria 1 Bangladesh 1 Norway 1 Kuwait 1 Haiti 1 Gibraltar 1 Rwanda 1 Trinidad and Tobago 1 Belarus 1 Micronesia 1 Nepal 1 Andorra 1 Slovakia 1 Thailand 1 Algeria 1 Portugal 1 Kyrgystan 11 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Cure 4 Kids Online Content • Clinical Case Discussions • Online Lectures • Digital Library • Online Live Lectures 12 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

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Cure 4 Kids Online Seminars • 120 Seminars available in 7 languages • Online Quiz and Feedback forms • Online Medical Education Credits (CME, CNE, CEU) • Usage is widespread by all disciplines. • Sometimes viewed and discussed as a group 17 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

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Cure 4 Kids Digital Library • Medical Textbooks • Medical Journals • Medical Dictionaries • Literature Databases • Selected Web Links 20 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Cure 4 Kids – Paper of the Month Journal Article of the Month Selected and reviewed by Dr. Raul C. Ribeiro St. Jude Children's Research Hospital 21 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Live meeting using web conferencing 22

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International Online Conference Rabat, Morocco Casablanca, Morocco 24

Cure 4 Kids Conference Rooms • • • 18 groups meet regularly on Cure 4 Kids Central America Morocco Lebanon Brazil Conference Room A – general meeting Emerging Global Collaboration Network 25 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

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Cure 4 Kids Homepage >> Courses >> Pediatric Oncology Nursing Course The goal of this course is to provide the participants (nurses) basic pediatric oncology nursing training. This course consists of on demand lectures, online papers, online live class discussions, and links to external educational resources. 1 Historical Perspectives of Pediatric Oncology 8 Infection Control 2 Biological Basis of Pediatric and Adolescent Cancer 9 Pain Assessment and Pain Management 3 Assessments 10 Survivorship and Late-effects of cancer 4 Planning 11 End-of-life and Palliative Care 5 Implementation 12 Professional portfolio development 6 Oncologic Emergencies 13 Individual disease Entity 7 Symptom Management and Supportive Care 14 Future Trends in Pediatric Oncology Nursing 28

Cure 4 Kids Online Courses • Online lectures • Online readings • Online testing • Feedback forms • Links to external web sites • Live online class meetings 29

Online Usage Statistics 30

Cure 4 Kids Items Accessed Per Month 31

Cure 4 Kids Usage Statistics • Detailed usage statistics by • Country • Occupation 32 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Telemedicine Dr. Francisco Pedrosa, IMIP/CEHOPE, Recife, Brazil 33

Telemedicine Recife is located in Pernambuco in the Northeast of Brazil, one of the poorest areas of the country. Recife has 3 million inhabitants, of which 50% are children. 34

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Telemedicine 36

Telemedicine technology has been utilized at SJCRH to support the goals of the IOP in providing education and consultative expertise to medically under-served regions 37

Telemedicine IMIP, a SJCRH partner hospital, was selected to develop the pilot IOP TELEMEDICINE program. 38

Telemedicine • Implemented on October 28, 1998 • Aims: - increased survival rate - reduce early mortality - reduce advanced stage disease at diagnosis 39

Telemedicine • Training and education of health care providers • Patient care (real time consultation) • Implementation of advanced diagnostic techniques • Continuing Education 40

Telemedicina ISDN EMBRATEL Fiber optics 6 Lines (BRI) 768 Kbps St Jude IMIP 41

Telemedicine 42

Telemedicine Case discussions with direct viewing of physical findings: Radiology Pathology Surgery 43

Telemedicine 80 70 60 From St Jude to IMIP = 264 Conferences 50 38 40 10 0 45 37 30 20 69 72 3 1998 1999 2000 2001 44 2002 2003

Telemedicine 30 From IMIP to St. Jude = 72 28 25 20 20 15 9 8 10 Second Opinion 4 5 0 1998 1999 2000 2001 45 2002 3 2003

Telemedicine 80 69 70 60 45 50 38 40 30 20 10 0 72 8 SJCRH IMIP 37 28 20 3 1998 1999 2000 9 4 2001 2002 3 IMIP 2003 SJCRH 46

Telemedicine ALL – 1980 -90 29% n=91 47

Telemedicine ALL: 1997 -2003 70± 3% n=263 48

Telemedicine ALL 100 % 70 50 29 0 1980 Survival 2003 49

Telemedicine NHL 1980 -90 Cum Survival 44± 8% n=98 Years from Diagnosis 50

Telemedicine NHL 1997 -2003 84± 3% n=66 51

Telemedicine NHL % 84 44 1980 Survival 2003 52

Telemedicine Benefits of Telemedicine • Increased speed and accuracy of diagnosis with positive impact on patient care • Close scrutiny of overall medical services and identification of areas requiring improvement (Pharmacy, Infection control, pathology) 53

Telemedicine Benefits of Telemedicine • Exposure of IMIP staff to current medical information and outstanding professional expertise without the need for travel • Opportunities for collaborative publications 54

Telemedicine Benefits of Telemedicine • Reduced “sense of isolation and helplessness” and improved confidence level among IMIP staff • Decreased patient referrals 55

Telemedicine Conclusions A telemedicine program linking international partner hospitals is technically feasible, has a positive impact on patient care, promotes more rapid diagnoses, and may lead to earlier, improved treatment of children with cancer. 56

Telemedicine Our Team 57

Telemedicine Dr. Francisco Pedrosa, IMIP/CEHOPE, Recife, Brazil 58

Patient Education Using Storytelling 59 Infection Control story – Dr. Miguela Caniza

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Cure 4 Kids - Feedback “Yesterday I registered on Cure 4 Kids and did not move from my computer for 10 hours. I said to my wife God Bless Danny Thomas! It is from my heart, and I extend it to his followers who continue his work” (Egypt) 61 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Cure 4 Kids - Challenges • • • Language Time Zones Levels of Expertise Cultural Differences Technology Financial Internet Accessibility Technical Support People 62 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Physician Authors Raul Ribeiro, MD, Hematology/Oncology, St. Jude Judith Wilimas, MD, Hematology/Oncology, St. Jude Gaston Rivera, MD, Hematology/Oncology, St. Jude Miguela Caniza, MD, Infectious Diseases Bassem Razzouk, MD, Hematology/Oncology, St. Jude Monica Metzger, MD, Hematology/Oncology, St. Jude Scott Howard, MD, Hematology/Oncology, St. Jude Jesse Jenkins, MD, Anatomic Pathology Carlos Rodriguez Galindo, MD, Hematology/Oncology, St. Jude Ching-Hon Pui, MD, Hematology/Oncology, St. Jude Faculty and staff from St. Jude and other institutions. 63 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Nurse Authors Ayda Nambayan, DSN Curriculum Developer, International Outreach Program. Georgette Chammas, Ed. D, Nursing Content Developer Nora Donahue, BSN, Nursing Content Developer Wren Kennedy, Certified Nurse Practitioner in Pediatric Oncology Pamela S. Hinds, RN, Ph. D, St. Jude Director of Nursing Research 64 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Cure 4 Kids Team • Raul Ribeiro, MD, Director, International Outreach Program • Lynne Jordan Bowers, Ph. D, Associate Director, International Outreach Program • Yuri Quintana, Ph. D – Education Director • Ayda Nambayan, DSN, Curriculum Developer • Richard O'Brien, Technologies Administrator • Ana Shuler, Member Services and Live Events Coordinator, • Aman Patel, Martin Norland, Cure 4 Kids Programming Team 65 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Cure 4 Kids Multimedia Team • Peter Bloom, Contract Multimedia Developer. • Louis Kimery, Multimedia Developer. • Adam Simpson, Contract Multimedia Developer • Jorge Cruz, Cure 4 kids Multimedia Developer and Latin America online events coordinator • Soumya Vandanam, Contract Multimedia Developer 66 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Cure 4 Kids Admin Team • Raisa Ioffe, Translation Coordinator and Content Facilitator • Jamilah Howard, Contracts Accountant • Adele Morton, Administrative Assistant II • Alicia Rodriguez, Administrative Assistant II • Wei Li, Administrative Support • Gail Pond, Administrative Support 67 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

St. Jude Team • • St. Jude Biomedical Communications Internet Development Department Nursing Education Department Scientific Editing Department Clinical Research Department Information Technology Services Hartwell Center for Bioinformatics and Biotechnology • Public Relations • Volunteer Services • ALSAC 68 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Donors • ALSAC • Corporate Donors: Qwest Ingram-Micro 69 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Cure 4 Kids – Conclusions • Motivated People Make it Happen • Global medical education possible • Great demand for high quality medical education • Content is being used and discussed • Online collaborations are increasing • Cure 4 Kids is becoming an active global online community 70 St. Jude International Outreach Program - www. cure 4 kids. org - Yuri. Quintana@stjude. org

Cure 4 Kids. org 71 A hospital without walls

Cure 4 Kids - Global Knowledge Sharing www. Cure 4 Kids. org 72