In terms of opportunity, standardized initiatives to improve quality of care, the rapid expansion of electronic health record (EHR) systems and patient registries, and the recent passage of the Patient Protection and Affordable Care Act have all opened new avenues for the systematic collection, analysis, and dissemination of information on the incidence and severity of chronic disease in populations under care (Chassin et al., 2010). National leadership has been at the forefront of these recent developments, an example of the valuable opportunities that exist to extend that leadership to completing and unifying the fragmented components of chronic disease surveillance identified in this report.

Successful implementation of a framework for national surveillance of cardiovascular and chronic lung diseases requires a mechanism to coordinate, monitor, and support the multiple data collection systems that contribute to the surveillance system. Furthermore, the system must provide ways to ensure that the elements collected can evolve in step with new knowledge about emerging risk factors, advancing technologies, and new understanding of the basis for disease.

Given that the mission of the Department of Health and Human Services (HHS) is to protect the health and provide essential services to Americans,1 that HHS is already responsible for the funding and conduct of numerous surveillance efforts, and that it is in a position to bring together stakeholders from both the public and private sectors as well as from multiple geographic levels, the committee believes HHS is in the best position to lead the development and implementation of the recommended framework and system. Because the recommended framework is based upon existing data collection approaches, it is crucial that those organizations responsible for the conduct of those approaches be involved in determining the ways to use and integrate existing approaches. It should be recognized, however, that resources are rarely available to support all the desires of each of the stakeholders. As discussed in Chapter 6, trade-offs will have to be made in terms of what data are to be collected and the mechanisms for doing so. For example, cost constraints may result in sampling rather than a full population assessment or the use of self-report rather than biological examinations.

It is critical that those who represent their organizations or agencies on the committee have expertise in the prevention, diagnosis, treatment, and surveillance of CVD or COPD or have access to such expertise as they engage in their deliberations in order to address the problems and issues confronting them as they work to integrate and enhance surveillance for these conditions. For example, as discussed in Chapter 3, a number of difficult issues regarding collection of data for the surveillance of COPD remain to be resolved, and it is anticipated that the working group will play a major role in such resolution. The committee believes strongly that federal agencies should collaborate with the many state and local public agencies and national and state-level, nongovernmental organizations that conduct components of the proposed system.

The use of a coordinating body, as the committee recommends below, is in line with the approach taken by Canada in its developing Canadian Chronic Disease Surveillance System2 (CCDSS), which integrates a network of provincial and territorial surveillance systems. The CCDSS began with diabetes surveillance and, in 2009, expanded the system to track information on the incidence and prevalence of diagnosed hypertension. The intent is to expand the system over time to include surveillance of other chronic diseases. The Canadian system is guided by a Task Group on Surveillance of Chronic Disease and Injury. The membership of the Task Force is composed entirely of government agencies, however, and the committee strongly believes that developing an effective system for the United States requires the involvement of both public- and private-sector stakeholders.

Recommendation 1

The committee recommends that the Secretary of HHS establish and provide adequate resources for a standing national working group to oversee and coordinate cardiovascular and chronic pulmonary disease surveillance activity. This working group should include representatives from HHS (CDC, NIH, AHRQ, CMS, IHS, ONCHIT, FDA), other relevant federal agencies (e.g., VA and DOD), and tribal, state, and local public health agencies, as well as nongovernmental organizations with relevant roles in surveillance.

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1 See http://govinfo.library.unt.edu/npr/library/status/mission/mhhs.htm (accessed August 2, 2011).

2 See http://www.phac-aspc.gc.ca/cd-mc/cvd-mcv/ccdss-snsmc-2010/2-1-eng.php (accessed August 2, 2011).



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