Development and Implementation of Cure4kids: Success Factors and Lessons Learned Raul C. Ribeiro, MD Department of Oncology Division of Leukemia Lymphoma St. Jude Children’s Research Hospital Cure 4 Kids
Cure4Kids:Usage—2017 • An annual average of 8,000 active users, from 160 countries. Of those over 850 are from Brazil • Overall, educational content has been viewed over 947,000 times by over 25,900 unique users • In the last year, members have viewed over 62,650 items from the website. • The offerings include more than 1,580 online seminars; 37 online self-paced courses and 35 instructor-led courses related to specific disease topics; and recorded sessions from 89 international conferences. Cure 4 Kids
Cure4kids:Usage • The Oncopedia section offers a growing collection of 211 reviewed clinical cases, 169 image cases, 77 images of the week, 87 polls, 98 image challenges, and 73 disease chapters in both English and Spanish, with interactive commentary from an international board of editors and other members • Over 250 international groups actively use Cure4Kids meeting rooms for education and collaboration, including 73 groups with members from Brazil. Cure4Kids web conferences have been used 286,000 times since 2002. In 2016, the site hosted a total of 2042 scheduled live meetings. Cure 4 Kids
Board Meeting June 2003 Educational Opportunities Travel Fellowship • To observe the St. Jude approach to integrate research into patient care • Passive Role • Language barrier • Discrepancy between the practice at St. Jude and that on other countries
Continuing Education • Selected journals and books • National/international meetings • Video-taped lectures • Visiting staff
Continuing Education • Restricted access – Medical students/Residents – Nurses – Parents/community • Benefits difficult to measure
Educational Opportunities Standard US Fellowship Pediatric Oncology Training Program • Critical mass to support partners • Leadership role in pediatric oncology • Many changed their initial plans and stayed in the US • Cut ties with their country of origin
Telemedicine in 1990’s • Increasing number of interactive video programs • Tele-radiology, store-and-forward, remains most common application • Technology was rapidly changing and costs were decreasing
Teleconference Beneficial to patients 38/40 (95%) cases
Teleconferences Ano 1998 3 8 1999 38 28 2000 37 20 2001 45 9 2002 69 4 2003 72 3 Total 264 72
Proctored Surgery Training of pediatric oncology surgeons
Telepathology • Train general pathologists in pediatric hem/oncology pathology – Decrease the number of wrong diagnosis • Systematic quality control of tissue diagnosis – Store-forward digital images – Web-based real-time tissue examination
Infrastructure • Video conference system • Cameras each end • TV screens/computers each end • Various medical peripherals • Video connection • T-1 line • Satellite
Creating Learning Communities Education and Training Patient Consultation Continuing Education
Cure4Kids Principles • Learning and Training rather than hardware were the essence of the program • Consumer-oriented and cultural-sensitive approach to maintain interest and motivation • Focus on the poor and disadvantage rather than communities which want more technology
The Learning Providers Corporation Texas A&M University Research Park College Station, TX
Electronic Library • Full-text journals and books • Evidence-based treatment protocols • Policies & procedures • Manuals and references • Patient-friendly reference material
Classroom (on demand) • Lectures • Courses • Instructional material for parents and patients
Conference Room (real time) • Online conference meeting facility –Online audio conference (Web) • Chat rooms • Bulletin Boards, newsgroups • Online patient support groups
The World is Flat—Thomas Friedman What Friedman means by "flat" is "connected": Globalization 3.0, as he calls it, is driven not by major corporations or giant trade organizations like the World Bank, but by individuals: desktop freelancers and innovative startups all over the world.
Global Online Discussions
Oncopedia Polls and Image Challenge
Oncopedia Chapters
Pediatric Blood and Cancer Articles
Data Repository • Electronic medical record • Hospital-based tumor registry activities • Support for research • Outcome measures
POND4Kids.org • POND4Kids – hospital-based tumor registry • Facilitates meaningful comparison of information among centers for clinical improvement • Each clinic can have its own private secure site • Common interface provides uniform data collection • Sharing of patient record is done without any patient identifiers and only at discretion of clinical directors
POND4Kids.org Diagnosed Cancers “ Standard ” Clinical Forms Customized “ Quickforms ”
POND4Kids.org Guatemala Survival Curves
User Friendly Interface • Simple, low-graphic interface (Yahoo-like) • Security Manager (log on) • Fast loading, low bandwidth requirements • Access based on who, what, where categories • Multilingual support • Patient information confidential • Patient support groups or links to such groups
Project Management • Built in ongoing cost analysis • Demonstrable results of site success • Site evaluation & feedback • Content ratings and evaluations
VISION Training Cure for All Education Cure 4 Kids Increase Survival Research Opportunities Improve Quality of Life
Success Factors
Lessons Learned • An environment connecting individuals and stimulating the sharing of ideas and experiences • Ingredients: community with a domain of interest, a place to meet, a facilitator, and passion for acquiring knowledge • It is not about bringing knowledge but about helping to grow the internally existent knowledge in the context of the local culture
Responsibilities • Champion/Sponsor is able to envision the services over time, and should have a sense of how the group can interact • Facilitator/Coordinator consulting, connecting, facilitating, helping, guiding. • Leader serves an integral role in the community's success by energizing the sharing process and providing continuous nourishment for the community • Librarian organizes information/data • Technical Steward understands business needs and ensure the appropriate tools are available to meet these needs. • Experts are the subject matter specialists • Members/Participants without these there is no community; the essence of a community is its members. •
Final Thoughts
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