|Year : 2019 | Volume
| Issue : 2 | Page : 49-52
Development and cost estimates of an integrated noncommunicable disease registry in North India: A study protocol
Ronika Paika1, JS Thakur1, Dheeraj Khurana2, Sanjay Kumar Bhadada3, Rajesh Vijayvergiya4, Rakesh Kapoor5, Shankar Prinja1
1 Department of Community Medicine, School of Public Health, Post Graduate Institute of Medical Education and Research, Chandigarh, India
2 Department of Neurology, Post Graduate Institute of Medical Education and Research, Chandigarh, India
3 Department of Endocrinology, Post Graduate Institute of Medical Education and Research, Chandigarh, India
4 Advanced Cardiac Centre, Post Graduate Institute of Medical Education and Research, Chandigarh, India
5 Department of Radiotherapy, Post Graduate Institute of Medical Education and Research, Chandigarh, India
|Date of Web Publication||10-Jul-2019|
Dr. Ronika Paika
Department of Community Medicine, School of Public Health, Post Graduate Institute of Medical Education and Research, Chandigarh
Source of Support: None, Conflict of Interest: None
Background: Out of the total deaths globally, noncommunicable diseases (NCDs) account for 72%. In India, as per the Global Burden of Disease Estimates 2016, NCDs contributed to 62% of the deaths and 55% of the disability-adjusted life years (DALYs), thereby posing a huge burden. In low- and middle-income countries, NCD burden estimates are either not available or that are available are insufficient. Hence, the tools to be used in developing countries similar to that in India are disease registries which work as a powerful method to record the data for NCDs.
Methods: The integrated registry will be developed in Chandigarh (UT), North India. The situational analysis of operationalization of the existing individual NCD registries of Chandigarh will be done with baseline assessment for core and advanced activities. From a review of the existing tools of varied registries, the integrated tool will be developed and validated. The integrated registry will also be developed as m-registry, i.e., the questionnaire in the form of mobile-based application will be linked to a web-based server so as to make the real-time data entry. Economic evaluation of the isolated NCD registries will be done so as to find the cost of per case registered, on the basis of which the cost of operationalizing an integrated NCD registry will be developed.
Discussion: The integrated registry would mean integration in terms of uniform reporting system for different NCDs such as cancer, diabetes at a younger age, acute cardiac events, and stroke, with a separate portion for each disease and pooling of human resources which will ultimately help in developing integrated evidence-based public health interventions for prevention and control. The Barbados' multi-NCD registry has developed a disease surveillance model to record NCD with the phased introduction of one registry component per year with the pooling of human resource and data at one place. A similar model of integrated registry has been developed in the Philippines.
Keywords: Cost data collection, integrated, noncommunicable diseases, registries, surveillance
|How to cite this article:|
Paika R, Thakur J S, Khurana D, Bhadada SK, Vijayvergiya R, Kapoor R, Prinja S. Development and cost estimates of an integrated noncommunicable disease registry in North India: A study protocol. Int J Non-Commun Dis 2019;4:49-52
|How to cite this URL:|
Paika R, Thakur J S, Khurana D, Bhadada SK, Vijayvergiya R, Kapoor R, Prinja S. Development and cost estimates of an integrated noncommunicable disease registry in North India: A study protocol. Int J Non-Commun Dis [serial online] 2019 [cited 2020 Jan 25];4:49-52. Available from: http://www.ijncd.org/text.asp?2019/4/2/49/262467
| Introduction|| |
Low- and middle-income countries have shown a substantial increase in noncommunicable diseases (NCDs), with 80% of all NCD-related deaths occurring in these countries in 2008. NCDs (most of which are chronic) will account for 69% of all global deaths by 2030, with 80% of these deaths in low- and middle-income countries. Data collection through a monitoring system is considered the first necessary step in public health planning to categorize health priorities and interpret the remedial pathways. Whereas in the low- and middle-income countries, NCD burden estimates are poorly available and are not uniform or scattered. Hence, the tools to be used in developing countries similar to that in India are disease registries which work as a powerful method to record the data for NCDs.
The registries generate high-quality data of disease surveillance for estimating the disease incidence, mortality, trends in population for different geographical regions, and survival with different cultures., The setting of the disease registry is necessary for understanding the trend pattern and monitoring the effectiveness of screening tools and preventive measures, gaps in the disease management, and reduction of disease burden through secondary prevention, for improvement in health care for individuals with chronic disease risk factors.
Worldwide, there are two integrated registries which are operationalized, namely the Barbados National Registry for Stroke, Acute Myocardial Infarction and Cancer which has developed a model for NCD surveillance in a small population with limited resources, and the Nationwide Integrated Chronic Noncommunicable Disease Registry, Philippines, for cancer, diabetes, chronic obstructive pulmonary disease, coronary artery disease, and stroke by department of health (DOH) which presented a prototype design of an information management network. No such integrated registry exists in Southeast Asia.
Although varied individual registries are working in India for different NCDs, a different and effective approach that uses integrated NCD registries to reduce cost and human resource will have to be used by low- and middle-income countries. The development of many different stand-alone systems of different chronic diseases leads to further fragmentation, high costs, and inefficiencies of health information systems, which might even undermine efforts to invest in enhanced national frameworks for common data. The importance of integrated NCD registries to a country is readily justifiable; hence, the aim of this study is to identify differences in the resources used to operate an integrated NCD registry, i.e., cancer, diabetes at a younger age, acute coronary events, and stroke registry in Chandigarh. For policymakers who make decisions about budgets for public health activities, economic evaluation of registries helps to document the resources required to sustain registration activities. The current study will provide the baseline functioning of the individual registries as well. The important input is to determine the strategy and tool for integration of the NCD registries and to ascertain the feasibility of electronic mode of integrated NCD registry. The cost assessment will be used, and details on the cost for collecting data on individual registries and the integrated registry may help inform other countries developing plans to establish NCD registries.
| Methods|| |
The registry will be set up in Chandigarh, North India, with a total population of 10.55 lakhs as per the 2011 census. The proportion of males and females is 55% and 45%, respectively.
Data collection approach
Situation analysis for the existing surveillance system for the NCDs in Chandigarh will be done which includes the health information systems and surveillance status for NCDs using the World Health Organization module for country profile of capacity and response to NCDs and the operationalization of isolated disease registries by using a prestructured tool for baseline assessment for core and advanced activities [Table 1]. The detailed quality assessment of the one randomly selected individual registry will be done on the basis of three parameters i.e. comparability, accuracy and completeness. The sample size for quality assessment will be calculated by taking the accuracy rate of 95% as a reference from the quality assessment of cancer registry 2014 with 5% margin of error and 95% confidence interval.,
Development and validation of an integrated noncommunicable disease registry tool
From the review of the existing tools for the isolated NCD registries functioning in Chandigarh, and other tools available for the NCD registries globally available, an integrated tool will be developed. The validation of the integrated tool will be done on the basis of theoretical construct and empirical construct. For theoretical construct, the face validity will be assessed for measuring the characteristics (conceptual domain) of interest on a 4-point Likert scale. Content validity index will be calculated by a panel of experts and questions on the 4-point Likert scale; 80% agreement will be taken as valid. The empirical construct for tool validation will be done on the theoretically validated tool by field testing or piloting. The validated integrated tool will also be developed in an application-based tool linked to a web-based server. To enumerate the performance of tool, the feasibility of the integrated electronic versus paper-based registry will be assessed on the basis of timeliness, completeness, and reporting outcomes for both for a same period of time over a same set of cases.
Cost Data Approach
The cost of operationalization of an integrated registry will be developed by ascertaining the financial cost per case registered using an activity-based costing approach. The purpose is to estimate the costs required to run an integrated registry. The cost data collection from the individual registries will cater the expenditure data on registry details such as surveillance activities, i.e., core and advanced activities of the registries. The fiscal cost generated at the activity level will be assessed to ensure that these costs sum to the total expenditure reported by the registries as a validation check. Costs that will be incurred in establishing the integrated platform will be estimated based on the experience of running the individual registries (capital, recurrent, domain costs, web domain, etc.). A detailed assessment of these activity-based costs will be performed, and summary statistics will be generated for cost associated with each activity enlisted. Univariate statistics (e.g., mean, standard deviation, median, and interquartile range) will be reported. The cost associated with different activities of the registry functions will be generated separately., Variation in these costs by the registry's organizational structure and size (by the total number of cases ascertained) will be assessed., In order to assess potential economies of scale (projected cost for integrated registry with differing case volume), costs that are fixed versus variable will be identified for each registry. In addition, the factors that impact average cost per case collected will be evaluated using regression analysis. Multivariate analysis will be undertaken to identify the key factors that impact average cost.
| Discussion|| |
Varied isolated registries have been established for cancer, diabetes at a younger age, acute cardiac events, and stroke, nationally and globally. An integrated registry will promote a unified way for data collection and analysis for major NCDs, which will initiate an integrated health information system and operationalize the evidence-based public and clinical interventions. This may also be a cost-effective approach of data collection and management which may also promote the rational use of workforce and budget in countries like India. The integrated registry would mean integration in terms of uniform reporting system for different NCDs such as cancer, diabetes at a younger age, acute cardiac events, and stroke, with a separate portion for each disease. The pooling of staff for multitasking, common training of staff for data collection, reporting, and management as there will be a single visit to collect data for each disease from hospitals, laboratories and also the identification and better management of comorbidities. The Barbados National Registry describes the integrated surveillance model for three major NCDs implemented with the rationale of varied economies of scale to be gained through shared staff, office space, and resources across registry components for the baseline incidence and postevent mortality for acute myocardial infarction and stroke patients and baseline incidence and survival for cancer patients developed by incorporating each component year by year. As these NCDs share common behavioural risk factors such as physical inactivity, unhealthy diet, tobacco and alcohol use, stress, overweight, and high blood pressure so the development of integrated registry will lead to integrated evidence-based public health interventions for prevention and control of NCDs and better follow-up. To provide leadership in addressing NCDs and measures to ensure the programs for prevention, the Integrated Chronic Noncommunicable Disease Registry, Philippines, was developed for collection of data related to patients with diagnosed/confirmed cases on chronic NCD. The integrated NCD registry system will not only aid in pooling of resources and NCD data at one place but also lead to a substantial reduction of operational cost which is being spent on isolated disease registries.
The ethical approval has been taken from the Ethics Committee of Post Graduate Institute of Medical Education and Research, Chandigarh, India.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
GBD 2016 Causes of Death Collaborators. Global, regional, and national age-sex specific mortality for 264 causes of death, 1980-2016: A systematic analysis for the Global Burden of Disease Study 2016. Lancet 2017;390:1151-210.
World Health Organization. Global Health Estimates 2015: Deaths by Cause, Age, Sex, by Country and by Region, 2000-2015. Geneva: World Health Organization; 2016.
India State-Level Disease Burden Initiative Collaborators. Nations within a nation: Variations in epidemiological transition across the states of India, 1990-2016 in the Global Burden of Disease Study. Lancet 2017;390:2437-60.
Lozano R, Naghavi M, Foreman K, Lim S, Shibuya K, Aboyans V, et al.
Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: A systematic analysis for the Global Burden of Disease Study 2010. Lancet 2012;380:2095-128.
Murray CJ, Vos T, Lozano R, Naghavi M, Flaxman AD, Michaud C, et al.
Disability-adjusted life years (DALYs) for 291 diseases and injuries in 21 regions, 1990-2010: A systematic analysis for the Global Burden of Disease Study 2010. Lancet 2012;380:2197-223.
Miranda JJ, Kinra S, Casas JP, Davey Smith G, Ebrahim S. Non-communicable diseases in low- and middle-income countries: Context, determinants and health policy. Trop Med Int Health 2008;13:1225-34.
Thakur JS. NCD surveillance. In: Public Health Approaches to Non-Communicable Diseases. New Delhi: Wolters Kluwer; 2015;1:193-209.
Thakur JS. Role of registries in NCDs: A public health perspective. In: Public Health Approaches to Non-Communicable Diseases. New Delhi: Wolters Kluwer; 2015;1:221-37.
The Barbados National Registry for Chronic Non Communicable Diseases. Available from: http://www.bnr.org.bb/cms/
. [Last accessed on 2019 Jan 18].
Tangka FK, Subramanian S, Beebe MC, Weir HK, Trebino D, Babcock F, et al
. Cost of operating central cancer registries and factors that affect cost: Findings from an economic evaluation of centers for disease control and prevention national program of cancer registries. J Public Health Manag Pract 2016;22:452-60.
Subramanian S, Tangka F, Green J, Weir H, Michaud F. Economic assessment of central cancer registry operations. Part II: Developing and testing a cost assessment tool. J Registry Manag 2009;36:47-52.
Dowless RM. Using activity-based costing to guide strategic decision making. Healthc Financ Manage 1997;51:86, 88, 90.
Player S. Activity-based analyses lead to better decision making. Healthc Financ Manage 1998;52:66-70.
Baltussen RM, Adam T, Tan Torres T, Hutubessy RC, Acharya A, Evan DB. Generalized Cost-Effectiveness Analysis: A Guide. Geneva: World Health Organization, Global Programme on Evidence for Health Policy; 2002.
Subramanian S, Tangka F, Edwards P, Hoover S, Cole-Beebe M. Developing and testing a cost data collection instrument for noncommunicable disease registry planning. Cancer Epidemiol 2016;45 Suppl 1:S4-12.