India is experiencing a rapid health transition, with large and rising burden of chronic diseases, which are estimated to account for 53% of all deaths and 44% of disability adjusted life years lost in 2005 (Reddy et al, 2005). Therefore, there is an urgent need to develop a permanent centre that would provide a ready, valid, national data base be it for research, assessing clinical management or monitoring public health control measures.
With control of communicable diseases and changing life styles non-communicable diseases are becoming a major public health priority. Cancer, Diabetes, CVD and Stroke are all expected to rise both in numbers and incidence in the coming decades. There is a need for a sound national research data base – whether that research is towards causation, observing clinical outcome or designing and monitoring control programmes. The NCRP has laid a strong foundation over the years to build on for cancer. The same principles for establishing a cancer research data-base will be adopted for setting up research data-bases in these other diseases as well.
The broad areas of present activity of the Coordinating Unit of NCRP and the detailed reasons and justification are given elsewhere
The points for justification with NCRP as the practical model are summarised below.
The present infrastructure at the Coordinating Unit in terms of number of staff and their status (which is temporary as opposed to permanency), space, equipment etc needs to be strengthened along the lines of other permanent ICMR centres for sustaining and expanding the activity on a long term basis. A permanent centre would ensure that data standards, quality and completeness of coverage in cancer registration are maintained and give direction towards cancer research and control activities. The overwhelming economic advantage of the cancer atlas approach in gathering information on cancer will be fully exploited without sacrificing the completeness and quality of information received through these means.
- The evolvement of the Coordinating Unit into a permanent ICMR centre will provide the infrastructure and strength to translate ideas into meaningful multi-centric collaborative studies with scientific impact. Consortial or collaborative studies have the economic advantage of pooling of resources and data-sets that increase the statistical power of the studies.
- A permanent centre that coordinates patterns of patient care activity (whether in cancer or diabetes or CVD or stroke) would have the strength of clinical neutrality, act as intelligence units and provide information services. It will also pave the way, for the practice of, evidence based medicine, help develop treatment protocols and possibly conduct clinical trials. Costs for treatment of cancer are extraordinarily high. Standardisation of treatment protocols for Indian conditions and patients with evaluation of costs and benefits measured through treatment outcome studies is a necessary step.
- Cancer surveillance and registration on a permanent setting would be required for designing, monitoring and evaluating cancer control programmes. The National Cancer Control Programme would need strong involvement of the proposed centre in research (cancer control research) and analysis and for need based planning of the programme. The immensity of the results in the report on ‘Development of an Atlas of Cancer in India’ provide several pointers towards the NCCP in general and the individual District Cancer Control Programmes in particular. This has also to be seen in the context of the inherent advantages of the application of Electronic Information Technology as a tool towards designing, monitoring and evaluation of cancer control programmes and activities. Without any doubt preventing any cancer from occurring or detecting it early is far more cost beneficial both in terms of cost of treatment and person years of life saved. The same analogy would apply for other non-communicable diseases.
- A permanent centre would help in providing in-house training in cancer/or NCD registration, epidemiology, the emerging field of heath informatics and help promote cross training for interdisciplinary and multi-disciplinary research. Use of trained staff is extremely important and is required to encourage and conduct research studies. Investment in human resources in this field is very important to carry on the various activities listed above at the proposed centre as well as in other collaborating centres across the country.
- All of the above needs to be achieved through rapid integration of recent advances in electronic information technology so as to achieve the maximum results in terms of aetiological research, assessing and evaluating patterns of patient care and in monitoring disease control. To advance the key development of disease informatics on a national scale a permanent ICMR centre is necessary to sustain and develop the activity to cover not only cancer but also other non-communicable diseases like, diabetes mellitus, cardiovascular diseases, stroke etc. Overall the disease informatics infrastructure would enable capture, analyse, apply and reuse knowledge of research results. The permanent centre would lay emphasis on developing software and innovations in disease informatics
Against the above background there appears to be an urgent need to set up disease registers covering the above non-communicable diseases with clearly defined objectives, specific coverage areas and short and long term research goals.
Since the NCRP has been in existence for over two decades, the research data base so generated should be harnessed for furthering aetiological, epidemiological, clinical and control research
The future of the NCRP therefore lies in the following areas:
The newer disease registers on Diabetes, CVD and Stroke should focus initially on data base generation in a standard and reliable way.
- Further expansion of the network of cancer registration so as to cover more areas of the country;
- Undertake research studies supported by in-depth laboratory component;
- Establish closer coordination in planning, monitoring and evaluating the activities under the National Cancer Control Programme;
- Involve clinical colleagues in assessing and evaluating patient care through the registry network.
- Continue development and strengthening of human resource development in cancer registration and epidemiology.
All of the above needs to be achieved through rapid integration of recent advances in electronic information technology so as to achieve the maximum results in terms of aetiological research, assessing and evaluating patterns of patient care and in monitoring control of these diseases. The advantages of using IT as a tool for are:
Overall the informatics infrastructure would enable capture, analyse, apply and reuse knowledge of research results.
- Enables easy access to information on disease;
- Drastically reduces the time and effort needed to generate and use information;
- Facilitates rapid translation of information to research observations;
- Promotes and intensifies uniformity and standardisation of methods in collating and recording data;
- Creates interface among research departments (basic, clinical and population based);
- Enhances swift coordination of results in different disciplines simplifying multi-disciplinary research including bridging studies;
Over the years the Coordinating Unit has become a beehive of IT enabled software programme development. In the past three years it has been estimated by software experts that over 500 man years of programming by the staff of the Unit has gone into the development of various software modules. This includes development of several web-based unique modules for the first time anywhere.
Against the above background, there is therefore an urgent need for strengthening the NCRP and initiating such activity in other diseases (CVD, Diabetes, Stroke) by the setting up of a permanent ICMR ‘National Centre for Disease Informatics and Research’.