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Strategies for Improving Cancer Control in Developing Countries

Strategies for Improving Cancer Control in Developing Countries . A Neglected Health Problem in Low Income Countries . Cancer causes more deaths globally than AIDS, malaria and TB combined

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Strategies for Improving Cancer Control in Developing Countries

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  1. Strategies for Improving Cancer Control in Developing Countries 2010

  2. A Neglected Health Problem in Low Income Countries Cancer causes more deaths globally than AIDS, malaria and TB combined In 2005, >50% of the 11 million estimated patients with cancer and 72% of cancer deaths were in developing countries, which have perhaps 5-10% of global resources Developing countries will account for an ever increasing fraction of the global cancer burden: NOW IS THE TIME FOR ACTION The WHA has approved a resolution (May 2005) recommending that countries develop and implement cancer control plans 2010

  3. Disease Burden and Resources 2010

  4. The Need: Greater Capacity Public Education Screening Prevention Lower Mortality Rate Fewer Patients with More Limited Disease and Fewer Potential Patients Less Limited Resources Less need and greater capacity for terminal care IMPROVED ACCESS GREATER CAPACITY 2010

  5. INCTR Mission Statement INCTR is dedicated to helping build capacity for cancer treatment and research in countries in which such capacity is presently limited ……and to increase the quantity and quality of cancer research throughout the world. Catalysis Concerted Effort Communication Sustainability 2010

  6. The Goals To prevent as many preventable cancers as possible To cure as many curable cancers as possible To improve the quality of life of patients with cancer at all stages of their disease 2010

  7. Organizational Structure Founder and Active Members Governing Council Advisory Board Executive Committee Branches Offices Associate Members COMMITTEES PROGRAMS Ethical Review Disease-Specific Strategy Groups Clinical Research Palliative Care Pathology Pediatric Cancer Special Panel Funding Foundational Programs Nursing Oncology 2010

  8. Advisory Board Special Panel of cancer experts from countries with limited resources Selection of INCTR Awardees Determine venues of Annual Meetings Develops “white papers” on specific problems and potential solutions Advisors from other organizations Strategic development, coordination of effort Disease-specific experts Scientific review of projects and participation in strategy group meetings 2010

  9. Associate Membership 2008 Corporate Membership (6) Partnerships in communications and research Support of INCTR activities Institutional/Organizational Membership (111) Access to a broad range of expertise Participation and support of INCTR activities Individual Associate Membership (145) Contributions, financially or in kind Input into INCTR strategies and activities Tangible benefits (Publications; Members Forum) 20% increase in institutional and individual membership in 2009 2010

  10. Offices and Branches USA, UK, France (AMCC), Canada, Brazil, Egypt, Tanzania, Cameroon, India, Nepal (NNCTR/INCTR) Access to regional/national resources Regional/national coordination of INCTR programs and projects Regional capacity building Guiding principles : INCTR Charter 2010

  11. INCTR’s Network Offices and Branches Collaborating Units 2010

  12. Necessary Networking GOVERNMENT: Legislation relevant to control of risk factors and opioid availability Structuring health services Supporting establishment of expert committees PRIMARY CARE PROVIDERS: Public education, early detection Collaboration in care, follow-up and palliation NON-ONCOLOGY SPECIALISTS: Early detection Treatment of early stage disease Rapid referral to oncologists ONCOLOGY SPECIALISTS: Expert diagnosis and treatment Research: clinical and translational Advising government NGOs: INDUSTRY: ACADEMIC ESTABLISHMENTS: Education of health care professionals with basic knowledge of cancer Leadership in epidemiological, public health, clinical and translational research 2010

  13. Multiverses: Potentially Unhealthy Divides Government Epidemiology and Public Health Health Service Provision Gov. Agencies Charities Universities Prof. Societies Clinical and Basic Research Health Service Administration Academies Corporations Task: ensure coordinated efforts: integration 2010

  14. INCTR’s Collaborations Governmental Organizations Non-Government Organizations Professional Organizations Double Helix Nebula Cancer Societies Corporations Academic Institutions Community at Large Collaboration essential among elements of various pathways leading to same end result – benefits to people DNA 2010

  15. Collaboration with Other Organizations (Selected) NCI – Core support, African BL project, educational and training programs, clinical trials, informatics* IAEA/PACT – PACT partner, palliative care WHO – Technical Committee for Global Cancer Control; EM region cancer control plan; Essential Drugs List (Cytotoxics); NGO in official relations UICC – Steering Committee and mentoring of projects for My Child Matters (sanofi-aventis) ESO – Bibliographies and systematic review Other – GBHI, MKI, CIC Italics; new discussions re: collaboration 2010

  16. Operating Principles Eye, Look, See Straight, Moral Act with a straight heart: Morality Ethics Ear, Handle Heart: mind, intelligence, soul LISTEN; HEAR UNDERSTAND OBEY Assess local situation with local experts (listen, look, understand) Develop dialogue; make scientifically sound, ethical and compassionate plans Act with discipline, use or create evidence, disseminate knowledge Ting 2010

  17. Knowledge and Action Knowledge, Wisdom Knowledge without action is of no value Action 2010

  18. Pillars Undertake long term clinical research projects that: Simultaneously provide services to patients, education to health workers (including research training) and data on which to build future progress (care, training, research) Help provide improved professional circumstances and lessen risk of migration Create centers of excellence/competence where health workers (local region, or from countries of similar SES), can receive training – expanding population coverage and creating regional or international networks of collaborating centers Undertake foundational projects designed to develop infrastructure and human resources relevant to the control of cancer - associated with evaluation and accreditation 2010

  19. Benefits of Clinical Studies Provides new knowledge on issues of local importance On-site or South-South Training Enhanced access to experts Associated with professional training and building essential infrastructure If multi-institutional, increases communication and results in dissemination of knowledge Long term collaboration with participation of outside experts Improved Professional Experience: Sustainability Increases access to effective care Immediate clinical benefits 2010

  20. Importance of Research Essential if national priorities are to be addressed and relevant evidence lacking Leads to a more analytical and disciplined approach to all aspects of health care Will allow advantage to be taken of unique scientific opportunities Will lead to greater independence of developing countries from high income countries – and economic development 2010

  21. Value of Cooperative Clinical Trials Improved access of patients and professionals to the local (few) and international experts: Carefully designed treatment approach Diagnosis and staging must be standardized Supportive care must be addressed Abandonment and loss to follow up must be reduced May include epidemiology or molecular characterization Data must be accurately collected (accountability) Increased communication and hence learning among all participants (community of practice) 2010

  22. Project Development PROJECTS INCTR Programs, Branches, Associate Members, Partners Scientific Review Ethical Review Disease Specific Strategy Groups Implementation 2010

  23. Present Focus Cancer in children and adolescents Leukemia and lymphoma Retinoblastoma Cancer in women Cancer of the uterine cervix Cancer of the breast Palliative care 2010

  24. INCTR Clinical Projects SURVEYS: Reasons for late presentation of retinoblastoma; 10 countries Patterns of breast cancer presentation and treatment; Egypt, Peru, India, Pakistan ; Publications planned for 2010 Reasons for late presentation of NPC (New project) EARLY DETECTION: Cx Cancer screening (in part with IARC) and training in VIA and VILI; Nepal, Tanzania, Nigeria, Peru Burkitt lymphoma – educating care providers and public (MCM) DIAGNOSIS: Upgrading of laboratory facilities, introduction of immunophenotyping (new) Assistance in Use of iPath for web-based consultation, education and training (and eventually, on-line meetings) 2010

  25. INCTR Clinical Projects CLINICAL TRIALS: Treatment and study of Burkitt’s lymphoma in Africa Treatment and study of acute lymphoblastic leukemia in India Accreditation of institutions for clinical trials management in Brazil MENTORING “MY CHILD MATTERS” PROJECTS: Egypt, Philippines, Tanzania, Kenya, Pakistan PALLIATIVE CARE: Provision of care and establishment of training centers; Nepal, India, Tanzania, Brazil Working to improve opioid availability Working to include PC in medical and nursing curricula WEB-BASED LEARNING AND RESEARCH: Open Educational Resources for Cancer 2010

  26. Building Focal Points Training Care Research Regional coordination essential Early Detection Community Treatment Cancer Unit/Center Palliative Care Community Creation of Evidence/Clinical Studies Education and Training of Health Professionals 2010

  27. Foundation Projects Focused (thematic) Workshops Community Health Clinics Clinical Cancer Research Networks Human Capacity Institutions Organizations Financial Support Training primary care and specialist health workers Assessing Available Evidence in LMC N-S and L-M Institutional Partnerships 2010

  28. Foundation Projects Holding focused workshops on in specific countries or regions Tanzania – access, pathology, support, palliation -2007 Egypt - BC Workshop 2008 as part of regional CC strategy (EMRO) Cataloguing the evidence base in developing countries (with various partners) and training physicians in systematic review; building a research ethos and identifying research needs Egypt: several cancers; LMI countries: breast cancer Training health workers and developing educational tools: Stopping smoking, oncology nursing, palliative care in Francophone Africa (AMCC) Building infrastructure for clinical trials in selected countries or regions; Brazil – accreditation of >30 centers in clinical research Catalyzing and coordinating institutional partnerships for education, training and consultation - north-south (UBC; Lund). MI to LI countries (Santa Marcelina and Lusophone countries) Working with Community Health Centers local civil society; early detection, home based palliative care – Nepal, Brazil 2010

  29. Thematic Workshops Workshop on access to care, supportive care, pathology, palliative care, Tanzania, January 2009 2010

  30. Communication Tools Newsletter: NETWORK NETWORK Workspace Admin. Workspace Education Site Member’s Forum Annual Meet. Workspace INCTR website: www.inctr.org and Portal 2010

  31. Development of Web-based Educational Materials….. Open Educational Resources for Cancer Consortium Open Educational Resources Repository INCTR Palliative Care Handbook (wiki) INCTR Supportive Care Guidelines (wiki) 2010

  32. Pocket Handbooks…. 2010

  33. …and Tools for Project Management and Research Breast cancer control (part of wiki cancer control site) Module 1: Identifiers and DemographicsModule 2: EducationModule 3: RecruitmentModule 4: Clinical Breast ExaminationModule 5: MammographyModule 6: Diagnostic Work-up Screen PositiveModule 7: Referral - no screeningModule 8: Consultation; not screenedModule 9: PathologyModule 10: EpidemiologyModule 11: Family History; femalesModule 12: Family History; malesModule 13: Past HistoryModule 14: Disease SitesModule 15: StageModule 16: Receptor StatusModule 17: TreatmentModule 18: Treatment ResponseModule 19: Summary - OverviewModule 20: Summary - Screening CenterModule 21: Summary - Diagnostic CenterModule 22: Summary - Treatment Cent INCTR has used modules 9-19 in a survey of presentation and treatment in 4 centers; >9000 collected to date 2010

  34. Challenges in Open Source Education Physical access to web and cost Few access points in LI countries (WiFi PDAs?) Relatively high cost (esp. if not Open Access) Work patterns re: use of web Infrequent use, skills underdeveloped Quality of information needs to be assessed A single portal with quality control should help Lack of materials relevant to low and middle income countries Much needs to be created Time and required to develop and update sites 2010

  35. Annual Meeting Award lectures Individual presentations (posters, oral) Reports on ongoing INCTR activities Keynote lectures Educational sessions/workshops on regionally important cancers and aspects of cancer control Consensus panel discussions Multidisciplinary conference Meet the expert sessions Members forum, strategy groups, committees 2010 Last Meeting Antalya, Turkey, March 22-24th 2009

  36. Funding strategies Funding from NCI Membership fees Grants from foundations and other organizations (especially via programs) Corporate support Public fund raising (especially via Branches) Web-based fund raising 2010

  37. Examples of INCTR Clinical Studies Burkitt’s lymphoma: treatment Retinoblastoma: reasons for late diagnosis Breast cancer: situational analysis 2010

  38. Multi-Center Study of the Treatment and Characterization of Burkitt Lymphoma in Africa Protocol Update – January, 2009 2010

  39. Overall Objectives To characterize the presentation features of BL To assess response, EFS, and OS in patients treated according to a uniform protocol To assess the efficacy of a salvage regimen (Second Line Treatment) 2010

  40. Participating Centers Ocean Road Cancer Institute, Tanzania Kenyatta National Hospital, Kenya Ile Ife University Hospital, Nigeria Ibadan University Hospital, Nigeria In process of expansion to other institutions in Kenya, Tanzania and Uganda and to adults with HIV-associated BL Central pathology review to be undertaken and immunophenotyping introduced 2010

  41. Patient Characteristics 2010

  42. Survival 2010

  43. Comparison OS 2010

  44. Retinoblastoma Survey Study Report Understanding Problems Faced by Parents of Children with Retinoblastoma Prior to Treatment October 23, 2008 2010

  45. Participating Institutions Institutions Mexico - Instituto Nacional de Pediatria Guatemala – University Francisco Marroquin Bolivia – El Instituto Oncologico del Oriente Boliviano Brazil – Albert Einstein Hospital Nigeria – OAUTHC Obafemi Awolowo University Tanzania – Ocean Road Cancer Institute Zimbabwe – University of Zimbabwe Turkey - Ankara University and Dokuz Euyul University India - All India Institute of Medical Sciences, Tata Memorial Hospital, Cancer Institute Chennai Pakistan - Shaukhat Khanum Memorial Hospital 2010

  46. Results - Association with Stage Children from rural areas had higher stages of disease (p<0.0001) Older age of child at diagnosis was associated with higher stage of disease (p<0.00001) Lower socioeconomic status was associated with higher stage of disease (p=0.0001) Father’s education level was associated with stage Lower education level was associated with higher stages of disease (p<0.00001) 2010

  47. Breast Cancer Survey Study A Retrospective Survey of Presentation Features of Breast Cancer and Risk Factors for Treatment Outcome January 2009 2010

  48. Breast Cancer Survey Study 2010

  49. Major Reasons Not Treated 2010

  50. Countries Associated with INCTR 2010

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