The ultimate goal of public health is to promote health and prevent disease occurrence or to limit progression from preclinical to symptomatic disease through primary and secondary prevention, respectively. Health promotion is the process of enabling people to gain increasing control over and improve their health. Primary prevention is usually addressed through interventions targeting lifestyle risk factors or environmental exposures among illness-free persons, including smoking, physical inactivity, and overweight/obesity. Secondary prevention among asymptomatic persons with preclinical illness may include a range of interventions comprised of early detection, immunizations, and chemoprevention.
Because of the public health emphasis on health promotion and disease prevention (especially primary and secondary prevention), chronic disease surveillance has traditionally focused on major risk factors for disease and the occurrence of chronic diseases. However, although primary and secondary prevention may have relevance for persons with chronic illnesses to prevent the development of other comorbid illnesses, a more immediate concern for individuals is how to live well, which involves a balance between their experience living with chronic illness(es) and associated costs (i.e., value).
Moreover, from a societal perspective, interventions to improve the patient experience need to be cost-effective and contribute to improving the health of the population. Thus, there is a strong rationale for expanded surveillance of chronic diseases to measure not only the factors that increase the “upstream” risk of chronic diseases but also the relevant health “downstream” outcomes associated with living well with chronic illness (Porter, 2010).
Table 2-1 provides an excellent framework for establishing a comprehensive chronic disease surveillance system. Such a surveillance system should collect data along the entire chronic disease continuum—from upstream risk factors to end of life care and for the purposes of promoting living well among persons with chronic illness. Such systems should collect information on symptoms, functional impairment, self-management burden, and burden to others.
Integrating the multiple potential measures of health status and determinants of health, including risk factors and interventions and costs, will be necessary for the ideal surveillance system to assess the status of patients living well with chronic illness and the societal impacts. The need to integrate these multiple measures has been emphasized in a recent Institute of Medicine (IOM) report on a framework for surveillance of cardiovascular and chronic respiratory diseases (IOM, 2011) and in reviews by others