1. Noncommunicable disease Surveillance
Professor David R MacLean MD
Simon Fraser University
Vancouver, Canada
NCD International Seminar, Lausanne January 2010

2. 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.
NCD International Seminar, Lausanne January 2010

3. 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.
NCD International Seminar, Lausanne January 2010

4. 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
NCD International Seminar, Lausanne January 2010

5. 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
NCD International Seminar, Lausanne January 2010

6. 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
NCD International Seminar, Lausanne January 2010

7. 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
NCD International Seminar, Lausanne January 2010

8. 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
NCD International Seminar, Lausanne January 2010

9. 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
NCD International Seminar, Lausanne January 2010

10. 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
NCD International Seminar, Lausanne January 2010

11. 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
NCD International Seminar, Lausanne January 2010

12. 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
NCD International Seminar, Lausanne January 2010

13. 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
NCD International Seminar, Lausanne January 2010

14. Three most common problems with cause of death data
World Health Organization
22 July 2018
Three most common problems with cause of death data
Inaccurate cause of death (especially for chronic diseases) specified on the death certificate
High proportion of ill-defined deaths (of absolutely no value for health policies and programs)
Confusion between immediate and underlying cause of death

15. Ill-defined / “garbage” codes
World Health Organization
22 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)

16. World Health Organization
22 July 2018
Broad causes of death patterns (%) before and after correction, Thailand, 2005, males

17. World Health Organization
22 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

18. Statistics collected but hard to use
World Health Organization
22 July 2018
Statistics collected but hard to use