Noncommunicable disease Surveillance Professor David R MacLean MD WHO, Switzerland 2nd NCD International Seminar, Lausanne. 10-18 August 2010

Noncommunicable disease Surveillance What is national NCD surveillance? National NCD surveillance is the ongoing systematic collection and analysis of data to provide appropriate information regarding a country's NCD disease burden, the population groups at risk, prevalence estimates of NCD risk factors, behaviours and determinants coupled with the ability to track health outcomes and risk factor trends over time. Episodic, non-systematic, non-routine data collection is not surveillance. Data collection activity of this type has rarely resulted in sustainable systems. 2nd NCD International Seminar, Lausanne. 5-12 January 2010

Noncommunicable disease Surveillance Why Do Surveillance? Surveillance is critical to providing the information needed for policy and program development and appropriate legislation for NCD prevention and control and to support the evaluation of programs and policies for monitoring progress and success. Surveillance supports practical action and preventive work with emphasis on relatively simple, but relevant indicators of key risk factors, behaviours, determinants and preventive actions. 2nd NCD International Seminar, Lausanne. 10-18 August 2010

Noncommunicable disease Surveillance Key Characteristics of surveillance systems formalized as an essential component of the national public health infrastructure and generally founded in policy and\or legislation dependent on issues of feasibility and availability of resources - human, technical and financial requires long term funding Data (indicators) collected reflect diseases or conditions that represent a substantial public health burden systems should contain a core set of indicators for the main chronic diseases, their risk factors and determinants 2nd NCD International Seminar, Lausanne. 10-18 August 2010

Noncommunicable disease Surveillance Key characteristics indicators should be central to NCD with an established science base; modifiable by intervention; measurable with valid tools; feasible and affordable; practical and achievable within a country's technical capacity; acceptable (culturally); and policy relevant NCD surveillance systems should be representative of a national\population level or at least representative of the level from which the data is collected National NCD surveillance systems need the technical, human and financial capacity to gather, process, analyse, interpret, and disseminate information 2nd NCD International Seminar, Lausanne. 10-18 August 2010

Noncommunicable disease Surveillance Key characteristics surveillance requires a level of epidemiological and statistical expertise accompanied by NCD content knowledge as well as professional training in methodological issues and development NCD surveillance systems need to be legally constituted by a central level of government which can provide the necessary legal framework of legislation and regulation for the system to be able to function in many instances NCD surveillance is mostly a collation, synthesis and presentation of data and information from multiple sectors within and outside of the health sector supplemented and complimented by additional surveys and sources of data 2nd NCD International Seminar, Lausanne. 10-18 August 2010

A NCD Surveillance System An Indicator framework Data collection and collation Data analysis\ interpretation Surveillance products and dissemination Action based on information Policy and program needs Management & Expertise Cooperation\Collaboration Legislation & Regulation Source: Enhancing Capacity for Surveillance for Chronic Disease Risk Factors and Determinants: PHAC 2005 2nd NCD International Seminar, Lausanne. 10-18 August 2010

Noncommunicable disease Surveillance Major barriers competing priorities, competition for funding and lack of commitment along with poor recognition of the need for and use of routine NCD surveillance insufficient long term funding and a lack of policy commitment to address the findings from surveillance systems make many surveillance initiatives not sustainable in the longer term in low resource settings there is often a lack of commitment and inadequate public health infrastructure to implement, utilize, and sustain effective NCD surveillance in many jurisdictions lack of skilled personnel along with funding competition with communicable diseases are constraints that have proven to be difficult to overcome 2nd NCD International Seminar, Lausanne. 10-18 August 2010

Noncommunicable disease Surveillance Core components of a Surveillance framework Exposures Behavioral including dietary/nutritional risk factors Physiological and metabolic risk factors Outcomes Mortality Morbidity Cost Health system response Interventions Health system capacity Determinants of Health Education Gender Material well being 2nd NCD International Seminar, Lausanne. 10-18 August 2010

Noncommunicable disease Surveillance Core components of a Surveillance framework Exposures Behavioral including dietary/nutritional risk factors tobacco use; alcohol consumption; physical activity, diet Physiological and metabolic risk factors Anthropometric – low birth weight; BMI; waist circumference Blood pressure; blood glucose; blood cholesterol; composite indicators – risk for diabetes; % multiple risk 2nd NCD International Seminar, Lausanne. 10-18 August 2010

Noncommunicable disease Surveillance Core components of a Surveillance framework Outcomes Mortality – all cause & cause specific by age and sex (VR or VA) Morbidity – cancer incidence (total & type); diabetes prevalence expanded - cancer by stage, AMI incidence, stroke incidence, CHD incidence, asthma prevalence, COPD, liver cirrhosis, case fatality (acute coronary events, stroke, cancer) Cost - % out of pocket expenditure; catastrophic expenditure; economic burden of NCD 2nd NCD International Seminar, Lausanne. 10-18 August 2010

Noncommunicable disease Surveillance Core components of a Surveillance framework Health system response Interventions – health promotion, disease prevention programs Health system capacity – trained health human resources; access to essential medicines Determinants of Health Education Gender Material well being 2nd NCD International Seminar, Lausanne. 10-18 August 2010

Noncommunicable disease Surveillance Data sources and collection methods methods need to be appropriate to the context and local capacity in low resource settings it may be only feasible to start with a few representative sentinel sites rather than attempting to collect data on a national level administrative registers, health examinations surveys, health interview surveys conforming to international standards for this type of data collection linkage to appropriate information systems such as registries age, sex and cause specific mortality data need to conform to standard definitions preferably utilizing ICD-coding 2nd NCD International Seminar, Lausanne. 10-18 August 2010

Three most common problems with cause of death data World Health Organization 17 July 2018 Three most common problems with cause of death data Inaccurate cause of death (especially for chronic diseases) specified on the death certificate Death ascertainment is not complete Confusion between immediate and underlying cause of death High proportion of ill-defined deaths (of no value for health policies and programs)

Ill-defined / “garbage” codes World Health Organization 17 July 2018 Ill-defined / “garbage” codes Frequent use of “un-helpful” coding categories can seriously bias a country’s cause of death pattern (often used as indicator of poor data quality) ICD-10 codes R00-99 “Symptoms, signs and ill-defined conditions Death from injury without intent indicated (Y10-34, Y872) Cardiac arrest, heart failure, etc.(I47.2, I49.0, I46, I50, I51.4,I51.5, I51.6, I51.9, I70.9) Cancer death categories with unspecified sites (C76, C80, C97)

World Health Organization 17 July 2018 Broad causes of death patterns (%) before and after correction, 2005, males After Before

World Health Organization 17 July 2018 Other common problems Data are not readily available Poor communication channels or collaboration between the different authorities responsible Lack of collaboration from the medical community/low emphasis on death certification Low quality of data (lack of standards, checking procedures, training of registrars and doctors, coders) Lack of investments (weak infrastructure, low salaries, etc) Little use made of the data in countries

Statistics collected but hard to use World Health Organization 17 July 2018 Statistics collected but hard to use