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  1. 1. Welcome to
  2. 2. Education and Research <ul><li>Educational and Research Sector are interrelated to Medical Sector </li></ul><ul><li>Health Sector Academic & Research Sector </li></ul><ul><li>Good reciprocal information flow </li></ul><ul><li>These are two inter dependent environments </li></ul>
  3. 3. Education and Information – Health Sector <ul><li>Education & Research and Health Sector in this </li></ul><ul><li>Century need: </li></ul><ul><ul><li>Access to Information </li></ul></ul><ul><ul><li>Equity in access of Information </li></ul></ul><ul><ul><li>Access and equity to information will facilitate </li></ul></ul><ul><ul><li>Virtual Enhancement of Academic Infrastructure </li></ul></ul><ul><ul><li>Quality of Education and Health care </li></ul></ul>
  4. 4. I C T infrastructure <ul><li>Health, Education and Research Sector require </li></ul><ul><li>ICT infrastructure which support applications </li></ul><ul><ul><li>Digital Library </li></ul></ul><ul><ul><li>Distance Learning </li></ul></ul><ul><ul><li>Internet </li></ul></ul><ul><ul><li>Information Portal </li></ul></ul><ul><ul><li>Simulation </li></ul></ul>
  5. 5. Lko Leased Line Medical V P N Network Medi-Network VSAT Institute Chennai Institute Mumbai Institute Kolkata S G P G I Lucknow P G I Chandigarh A I I M S New Delhi Medical Institute City
  6. 6. Network Connectivity of 8 ICMR location for Video Conferencing 2 Mbps link ICMR Institutes in India MPLS-VPN Network Service provider’s Cloud Video conferencing equipment ERNET HQ, New Delhi Internet
  7. 7. VC facility at each ICMR site Video conferencing equipment Conference Room Layout
  8. 8. Remote/Regional Office Layout MPLS-VPN Link Router Modem Switch Video conferencing equipment Conference Room Layout
  9. 9. Virtual Classroom and Connectivity of Libraries MPLS-VPN Network Service provider’s Cloud HQ, New Delhi Virtual Classroom Internet2
  10. 10. ICMR Project Implementation & Application <ul><li>Project will implemented in 4 months. </li></ul><ul><li>This will enable ICMR: </li></ul><ul><ul><li>To integrate their institutions </li></ul></ul><ul><ul><li>To access content and virtual class room </li></ul></ul><ul><ul><li>Tele-education </li></ul></ul><ul><ul><li>Tele-research </li></ul></ul><ul><ul><li>Digital Library </li></ul></ul>
  12. 12. Geographic Trends in cancer in India DEVELOPMENT OF AN ATLAS OF CANCER IN INDIA
  13. 14. DEVELOPMENT OF AN ATLAS OF CANCER IN INDIA – Main Objectives and Overall Aim <ul><li>Obtain an Overview of Cancers in Different Parts of the Country and know Similarities and Differences in Cancer Patterns in a Relatively Cost Effective way Using recent advances in Electronic/Computer and Information Technology </li></ul><ul><li>Calculate Estimates of Cancer Incidence wherever feasible </li></ul>
  14. 15. Other (Subsidiary) Objectives <ul><li>Strengthen Departments of Pathology in Medical Colleges and other hospitals through PC and Internet Connectivity </li></ul><ul><li>Provide Orientation/Training in Cancer Registration & Epidemiology to Pathologists </li></ul>
  15. 16. Concept - Methods <ul><li>Since over 80% of cancers reported under the NCRP have a microscopic diagnosis of cancer the focus of data capture is the department of pathology </li></ul><ul><li>Patient Identifying and Diagnostic details of All malignant neoplasms reported are entered on a prescribed format on a specifically designed web-site </li></ul>
  16. 17. Application of Information Technology (IT) - Development of Website <ul><li>Domain Name </li></ul><ul><li> </li></ul><ul><li> </li></ul><ul><li>Functioning since January 2002 </li></ul>
  17. 18. Application of IT (Contd.) <ul><li>Allows On-line Registration of New Centres </li></ul><ul><li>Collaborating Centres provided with </li></ul><ul><li>- Login ID and Password for </li></ul><ul><li>On Line Data Entry on Core Proforma and </li></ul><ul><li>Onward Transmission </li></ul><ul><li>Basic Checks on data entry provided </li></ul>
  20. 23. Application of IT (Contd.) Project Phases <ul><li>Phase I Emphasis on Data Capture </li></ul><ul><li>Phase II Generation of Basic Tables, Charts </li></ul><ul><li>Phase III On-line Feed Back of Data Received </li></ul><ul><li>Phase IV On line Validation Checks/ Programmes </li></ul>
  21. 24. Data Received <ul><li>Total Cases for Two Year Period: </li></ul><ul><li>1 Jan 2001 - 31 Dec 2002 : 2,17,174 </li></ul><ul><li>About 1000-1200 cases per week </li></ul><ul><li>Data also received through : </li></ul><ul><li>Floppy disks – Soft Copy </li></ul><ul><li>Form – Hard Copy </li></ul>
  22. 25. Bangalore – PBCR : 75.1 Barshi – PBCR : 36.2 Remaining No. of Districts > MAAR of any PBCR : 55 Districtwise Comparisons of MAAR with that of PBCRs under NCRP ALL SITES ( ICD 10 : C00-C96 ) - Males Source: Development of an Atlas of Cancer in India First All India Report 2001-2002. NCRP, Bangalore 81.2 83.5 85.8 89.5 90.8 97.8 101.9 103.0 103.3 106.5 106.7 107.6 114.2 119.0 125.5 126.4 155.1 217.9 0 25 50 75 100 125 150 East Sikkim (SK) Chennai - PBCR Imphal West (MR) Mumbai - PBCR Thiruvananthapuram (KL) Bhopal - PBCR Thrissur (KL) Delhi - PBCR South Goa (GA) Kollam (KL) Chandigarh (CH) Mamit (MZ) Champhai (MZ) North Goa (GA) Kolasib (MZ) Lunglei (MZ) Sechhip (MZ) Aizawl (MZ) Rate per 100,000
  23. 26. Chandigarh (106.7) North Goa (119.0) South Goa (103.3) Kollam (106.5) Kolasib (125.5) Champhai (114.2) Serchhip (155.1) Aizawl (217.9) Lunglei (126.4) Mamit (107.6) Districtwise Distribution of MAAR ALL SITES ( ICD 10 : C00-C96 ) - Males
  24. 27. Barshi – PBCR : 45.0 Remaining No. of Districts > MAAR of any PBCR : 31 Districtwise Comparisons of MAAR with that of PBCRs under NCRP ALL SITES ( ICD 10 : C00-C96 ) - Females Source: Development of an Atlas of Cancer in India First All India Report 2001-2002. NCRP, Bangalore 90.3 90.7 92.3 92.7 92.8 93.3 94.0 95.1 99.0 101.6 102.4 107.8 112.1 113.9 116.8 148.0 155.5 209.2 0 25 50 75 100 125 150 175 200 225 South Goa (GA) Kollam (KL) Pondicherry (PY) Champhai (MZ) Panchkula (HR) Imphal West (MR) Bhopal - PBCR Imphal East (MR) Bangalore - PBCR Chennai - PBCR Mumbai - PBCR Lunglei (MZ) North Goa (GA) Delhi - PBCR Kolasib (MZ) Chandigarh (CH) Sechhip (MZ) Aizawl (MZ) Rate per 100,000
  25. 28. Chandigarh (148.0) North Goa (112.1) Serchhip (155.5) Aizawl (209.1) Lunglei (107.8) Kolasib (116.8) Districtwise Distribution of MAAR ALL SITES ( ICD 10 : C00-C96 ) - Females
  26. 29. International Comparisons of AAR with that of PBCRs under NCRP TONGUE ( ICD 10 : C01-C02 ) - Males Source: Development of an Atlas of Cancer in India First All India Report 2001-2002. NCRP, Bangalore
  27. 30. Mumbai – PBCR : 4.5 Bangalore – PBCR : 3.1 Barshi – PBCR : 1.4 Remaining No. of Districts > MAAR of any PBCR : 17 Districtwise Comparisons of MAAR with that of PBCRs under NCRP TONGUE ( ICD 10 : C01-C02 ) - Males Source: Development of an Atlas of Cancer in India First All India Report 2001-2002. NCRP, Bangalore
  28. 31. Gandhinagar (0.8) Daman (1.0) Kurukshetra (0.9) Chamoli (1.0) Bhandara (1.1) Perambalur (0.8) West Sikkim (4.4) East Sikkim (3.4) East Khasi Hills (1.4) West Kameng (12.6) Lower Subhansiri (1.5) West Siang (1.7) North Cachar Hills (2.4) Tuensang (1.3) Mokokchung (2.4) Kohima (19.4) Senapati (3.5) Imphal West (7.4) Tamenglong (5.5) Dimapur (2.2) Imphal East (3.2) Ukhrul (12.7) Thoubal (3.7) Bishnupur (4.6) Chandel (4.4) Wokha (5.2) Churachandpur (10.2) Champhai (6.1) Serchhip (21.7) Aizawl (8.3) Kolasib (5.0) Lunglei (11.6) Mamit (9.7) Districtwise MAAR / 100,000 NASOPHARYNX ( ICD 10 : C11 ) - Males
  29. 32. Nalbari (1.5) Kamrup (1.7) Darrang (1.1) Marigaon (2.7) Changlang (1.9) Jorhat (1.8) Lunglei (3.4) Lawngtlai (3.8) Aizawl (2.0) Barpeta (1.9) Bongaigaon (1.7) Dibrugarh (1.8) Papum Pare (1.9) East Sikkim (2.1) West Khasi Hills (1.0) Nagaon (0.9) Karimganj (0.8) Thoubal (0.9) Cachar (0.8) Dimapur (1.5) Golaghat (1.0) Panchkula (1.4) Mahendragarh (0.8) Ajmer (1.0) Sabar Kantha (0.8) Gandhinagar (2.1) Mahesana (1.6) Patan (0.8) Kheda (1.5) Junagadh (1.1) Surendranagar (0.9) Ahmedabad (1.4) Anand (1.8) Vadodra (0.8) Aligarh (1.1) North Goa (2.0) South Goa (1.7) Dakshina Kannada (1.0) Kodagu (2.7) Thrissur (1.2) PHARYNX ( ICD 10 : C14 ) - Males Districtwise MAAR / 100,000
  30. 33. SUMMARY <ul><li>Developments in IT used to collate data </li></ul><ul><li>Easier in Private than in Governmental settings </li></ul><ul><li>Most feasible in comprehensive cancer centres </li></ul>
  31. 34. COST <ul><li>Methodology extremely cost-effective </li></ul><ul><li>Under the NCRP the cost per case is: </li></ul><ul><li>Urban PBCRs (average)= Rs 350($8) </li></ul><ul><li>Rural PBCR – Barshi = Rs 4100($90) </li></ul><ul><li>Cancer Atlas Project </li></ul><ul><li>Average cost per case= Rs 24($0.5) </li></ul>
  32. 36. International Journal of Cancer Early View (Articles online in advance of print) Published online: 22 April 2005 Epidemiology Geographic pathology revisited: Development of an atlas of cancer in India
  33. 38. Data entry screen from Cancer Atlas website
  34. 49. Advent of IT <ul><li>Unique opportunity to leap frog into establishing a system so as to have a state/national disease data base - if advances in electronic information technology are harnessed </li></ul><ul><li>Essential for a developing country like India </li></ul><ul><ul><li>Vastness </li></ul></ul><ul><ul><li>Necessity of having the data </li></ul></ul><ul><ul><li>Economical </li></ul></ul>
  35. 50. Major Urgent Reasons for Building on the Idea and taking it forward on Fast Track <ul><li>Need for Expanding Project Scope with Information Technology </li></ul>
  36. 51. Coordinating Unit of NCRP <ul><ul><ul><li>500 man years of effort on data capture, validation, consolidation, analysis and report preparation </li></ul></ul></ul><ul><ul><ul><li>Already existing knowledge and trained personnel </li></ul></ul></ul><ul><ul><ul><li>Fairly large exercise involving participation by public and private hospitals/medical institutions laboratories </li></ul></ul></ul>
  37. 52. Advantages of using Information Technology (IT) as a tool for Cancer Research - Essentially it would create A System for Flow of Standardised Information on Cancer
  38. 53. Advantages of IT in Cancer Research <ul><li>Networking and integration of the various parameters for continuous ready flow of information to translate into: </li></ul><ul><li>Multi-disciplinary research: </li></ul><ul><ul><li>for eliciting cause </li></ul></ul><ul><ul><li>undertaking type of control measures </li></ul></ul><ul><ul><li>Regulating treatments, monitoring follow-up and measuring outcome </li></ul></ul>
  39. 54. Overall the cancer informatics infrastructure would enable capture, analyse, apply and reuse knowledge of research results
  41. 56. Objectives and Broad Mission Statements The main broad and overall objective of the centre is to sustain and develop a national research data-base on cancer, diabetes, CVD and stroke through recent advances in electronic information technology with a national collaborative network, so as to undertake aetiological, epidemiological, clinical and control research in these areas. The newer areas that the forthcoming Centre aims is towards generation of more data that will be helpful in developing effective prevention strategies and programmes so as to provide better care and support to patients. This is besides research into mechanisms of causation, through a combination of field, clinic and laboratory studies. A. Objectives
  42. 57. <ul><li>Plans, directs, develops, supports, coordinates and evaluates a national programme of disease surveillance involving the collection and analysis of reliable data on magnitude and patterns, so as to answer key questions about disease incidence and mortality in different demographic and population settings; </li></ul><ul><li>Evolves, coordinates and evaluates a national standardised programme on patterns of patient care in different anatomical sites of cancer, diabetes, CVD and stroke; </li></ul><ul><li>Plans, innovates and integrates recent advances in communications and electronic information technology to develop the emerging field of health informatics, so as to have a National Electronic Surveillance System that creates and generates a national disease research database; </li></ul>Broad Mission Statements
  43. 58. <ul><li>4. Designs, undertakes and implements multi-registry/centric collaborative research studies in-keeping with recent advances in epidemiological research; this very forte of the Coordinating Unit is helping it to evolve into a centre for National Disease Informatics and Research that could foster large scale consortial research; </li></ul><ul><li>Undertakes specific studies in molecular cancer epidemiology, through harmonizing clinical and epidemiological data on one hand and knowledge from the progressing field of bio-informatics on the other; </li></ul><ul><li>Develops human resources in the medical research with focus on multi-disciplinary approach – field, clinic, laboratory using the tool of electronic information technology; in the process stimulate cross training and inter and multidisciplinary research. </li></ul>Broad Mission Statements (Contd…)
  44. 59. <ul><li>Over the years the NCRP has laid a strong foundation for a data base on cancer </li></ul><ul><li>More recently the approach and data from the cancer atlas has complimented and added a new dimension towards building and sustaining quality national research data base through the power of Information Technology (IT) </li></ul><ul><li>Opportune Time to harness Advances in IT for creation of such a data base </li></ul>SUMMARY – Achievements
  45. 60. <ul><li>Entire activity of the NCRP and the projects under it are directed, monitored and executed by the Coordinating Unit in Bangalore </li></ul><ul><li>Converting this unit into a permanent ICMR centre would strengthen the existing cancer data base and could find application in other diseases </li></ul>SUMMARY – TARGETS EXPECTED (Contd)
  46. 61. Achievements / Targets expected The Coordinating Unit of NCRP has taken a lead by demonstrating capability of conducting research in various aspects of cancer. It enjoys a unique position of being a leader in coordinating and undertaking epidemiologic studies on cancer. The Coordinating Unit has developed expertise in planning, directing, developing, coordinating and evaluating a national programme of cancer surveillance. Further, it has analysed and prepared reports on magnitude, patterns and incidence of cancer in different population and hospital settings. It is mainly through the NCRP and perhaps for only this disease in this country that we have actual incidence rates (not estimates).
  47. 62. Through the ‘Cancer Atlas’ the Unit has used recent advances in IT to successfully collate, check, analyse and interpret data thereby creating a platform for establishing a National Electronic Cancer Surveillance System. The Unit has standardised various epidemiologic questionnaires and manuals including patient information forms (and manuals) for specific sites of cancer (breast, cervix, head and neck). A systematic plan of action is underway to assess and evaluate clinical stage and outcome based on details of treatment. A strategy for follow-up has been evolved. Software including web-based programmes are in place for data entry on the internet by each of the five hospital based cancer registries and 35 other centres in different parts of the country. Achievements / Targets expected (Contd…)
  48. 63. Achievements / Targets expected The future centre’s mission is to carry forward these activities in a comprehensive manner so as to yield research results of long standing value. To accomplish this mission, the goal is to bring together a multi-disciplinary team of scientists in epidemiology, public health, bio-statistics, clinicians, molecular biologists and those in other related fields. The expected target is to provide on-line electronic national cancer data-base for research, patient care outcome and cancer control. A national cancer research data base has indeed been created and it needs to be sustained and enlarged both horizontally to cover wider areas and vertically to undertake in-depth research.
  49. 64. Specific Function Statements <ul><li>To provide or plan to provide baseline information and technical help in designing, monitoring and evaluating cancer and other control programmes and activities. </li></ul><ul><li>The centre would encourage and extend technical support to all Regional Cancer Centres, oncology wings in medical colleges, non-governmental or private cancer centres / radiotherapy / oncology units for constituting and establishing cancer or other data collection in their institutions along internationally acceptable and nationally adaptable formats and standards. </li></ul>
  50. 65. <ul><li>With control of communicable diseases and increased life expectancy, Non-communicable Diseases are emerging as a major Public Health Problem </li></ul><ul><li>Advances in IT in India have to be quickly applied to Public Health and Research </li></ul>URGENCY FOR PROPOSAL MIDWAY THROUGH 10th PLAN
  51. 66. MAIN OBJECTIVE Sustain and Develop a National Research Data Base on Cancer, Diabetes, Stroke, and other Cardiovascular Diseases using advances in IT, through a National Collaborative network, so as to undertake aetiological, epidemiological, clinical and control research in these areas
  52. 67. <ul><li>Studies in aetiology will receive special focus through disease specific registers like lymphoma-leukaemia registry, childhood cancer registry and bone tumour registry etc. Special purpose registries for specific populations exposed to suspected chemicals, radiation etc will also be focussed, include in-depth laboratory component for detailed molecular and genetic typing using a battery of investigations such as immuno-histochemistry, flow cytometry, PCR studies etc. The centre could act as a reference laboratory at least for certain studies. The centre will devote to the conduct of multicentric studies and meta-analysis of rare and unusual cancer types and those tumours that are of special interest to Indian conditions. </li></ul>Specific Function Statements (Contd…)
  53. 68. iv. Conduct studies in populations with exceptional or changing incidence rates or unusual environmental exposures. v. The centre will have active interaction on scientific topics and where feasible collaborative projects with related ICMR permanent centres / institutes like Regional Medical Research Centre, Dibrugarh, Institute of Pathology, New Delhi, Institute of Cytology and Preventive Oncology, Noida etc. In the same way it will also interact with local institutions in Bangalore like the Indian Institute of Science, Jawaharlal Nehru Centre for Advanced Scientific Research, NIMHANS etc. Specific Function Statements (Contd…)
  54. 69. vi. The centre will create a Directory of on-going research in India on cancer, diabetes, CVD and stroke. vii. Psychological studies on cancer, diabetes, CVD and stroke will be pursued and Quality of Life studies will focus on rehabilitation needs. Specific Function Statements (Contd…)
  55. 70. Specific areas of collaboration/proposed collaboration Specific Function Statements (Contd…) <ul><li>With Triesta Sciences Pvt Ltd – a Bangalore based company for laboratory support in the molecular epidemiology of breast and colo-rectal cancers; </li></ul><ul><li>Collaboration with cancer registries in the North east for the following project proposals: </li></ul><ul><ul><li>PBCR – Guwahati: Role of HPV and tobacco in the occurrence of cancer cervix: a case control study ; </li></ul></ul><ul><ul><li>PBCR – Mizoram: Role of Helicobacter pylori and use of smoked meat in the occurrence of cancer stomach: a case control study; </li></ul></ul><ul><ul><li>PBCR Manipur: Risk factors in the epidemiology of lymphoid and haemopoietic malignancies </li></ul></ul>
  56. 71. Basis for selection of location <ul><li>The Coordinating Unit of the NCRP has been functioning at Bangalore since 1991. </li></ul><ul><li>The entire activity of the NCRP and the projects under it are directed, monitored and executed (including conduct of workshops and coordination of Annual Review Meetings and workshops) by the Coordinating Unit of NCRP. </li></ul><ul><li>The Coordinating Unit is in a unique position in that it is coordinating an on-going multi-centric collaborative project (with several studies under it). It is operating, from a rented premises, in Bangalore and working with a skeletal staff and a shoestring budget. Limited requirements are being met within the overall budget allocation of the ICMR. However, even with limited staff and infrastructure, the programme has demonstrated capability of carrying out high quality of research. </li></ul>
  57. 72. Basis for selection of location (Contd) <ul><li>Basic infrastructure of staff, internet connectivity and computers and most importantly software programmes and modules have been developed. This has been developed in-house with support of hardware and software consultants. </li></ul><ul><li>Further software development activity is underway so as to have user friendly state of the art modules that would meet the requirements listed above. </li></ul><ul><li>The ease of consulting and/or hiring IT professionals/programmers </li></ul><ul><li>The Council has five acres of land and construction of the building for the units of ICMR located in Bangalore including the Coordinating Unit is underway. </li></ul>
  58. 73. Basis for selection of location (Contd.) <ul><li>The Coordinating Unit is also on the verge of collaboration with the Rajiv Gandhi University of Health Sciences for enrolling students into the PhD programmes and commencing courses in Epidemiology and Health Informatics. </li></ul><ul><li>A Memorandum of Understanding is also to be signed with Triesta Sciences Pvt Ltd for collaborative molecular and genetic epidemiological studies in cancer breast and colo-rectal cancers. </li></ul><ul><li>Lastly, like several major cities (including the metros) in India, it would promote the cause of medical research to have a permanent ICMR centre in Bangalore for several reasons. It has a number of medical institutions and several other scientific institutions. It would be important to have the presence of ICMR with a permanent centre with scope of future collaboration with many of these institutions. </li></ul>Under the circumstances stated, Bangalore would be the ideal location of this centre.
  59. 74. <ul><li>Descriptive Epidemiology – which would concern the PBCRs and the Cancer Atlas </li></ul><ul><li>Clinical Epidemiology – which would essentially be on patterns of care and survival studies; followed in the next stage by Patient Care and Management Strategies, Clinical research and therapeutic trials for management of cancer in India. </li></ul><ul><li>Analytic Epidemiology – case control studies </li></ul><ul><li>Molecular Epidemiology along with (iii) above will focus and concentrate on aetiological studies. </li></ul><ul><li>Department of Epidemiology with the following units: </li></ul>Manner of Scheme Implementation
  60. 75. <ul><li>Department of Bio-Statistics - which would contribute towards the statistical methods and evaluation of different units listed above; </li></ul><ul><li>Department of Informatics and Programming - which would contribute towards the development of software modules, internet based programming and hardware maintenance of different programmes/projects; </li></ul><ul><li>Cancer Control and Prevention - would generate documents to assist in cancer control activities at state or national levels. </li></ul>Manner of Scheme Implementation (Contd.)
  61. 76. <ul><li>Social, Economic and Behavioral Intervention Research - the social relevance of cancer on society, behavioral patterns associated with the disease and provision of counseling services. </li></ul>Besides the above, the centre would be a hub of training in cancer registration, epidemiology and research with the aim on National Human Resource Development. The institute would collaborate with the Rajiv Gandhi University of Health Sciences for MPH and PhD programmes in Epidemiology and Health Informatics. Manner of Scheme Implementation (Contd.) VI. Human Resource Development
  62. 77. <ul><li>Epidemiology has been described as a science that moves slowly but with great force; </li></ul><ul><li>It is particularly relevant for a developing country like India because of paucity of information and low cost in conducting such studies; </li></ul>
  63. 78. <ul><li>By incorporating new tools that analyse exposures at the chemical level, recent advances in genomics and molecular sciences on the one hand and the power of electronic information technology on the other there is an unique opportunity to integrate and explore avenues in research that was hitherto not possible. </li></ul>
  64. 79. <ul><li>Studies in molecular epidemiology will therefore, help in further understanding mechanisms in causation of cancer and identify new preventive, diagnostic and therapeutic interventions. </li></ul>