Challenges and opportunities for central cancer registries (CCRs): ARRA, eHealth and comparative effectiveness research (CER) in supporting achievement of public health goals

BACKGROUND: ARRA legislation addressing HIPAA privacy and security provisions and Comparative Effectiveness Research (CER) significantly impacts CCRs in many ways. Purposes of CER appropriations are to: 1) evaluate relative effectiveness of different health care services and treatment options; and 2) encourage the development and use of clinical registries, clinical data networks and other forms of electronic data to generate outcomes data. CER supports and enables better decisions about the use of healthcare resources leading to improvements in the public's health and reducing the costs of care. National CER priorities specifically address public health and social justice goals. Much has been published detailing the roles of health information technology (HIT), health information exchange (HIE) and CER in transforming the healthcare system and achieving better health outcomes. To facilitate CCR planning, we distilled many authoritative documents. PURPOSE: To identify CER challenges and opportunities and develop an action plan. METHODS: We reviewed HITECH and related documents and conducted a literature review of CCR leading practices and registry-based research. We incorporated this information in strategic planning and operations. RESULTS: We developed specific plans and actions a CCR can take to evolve with the eHealth environment and serve as a resource for innovative data sharing and research to support new initiatives such as CER. DISCUSSION: National- and state-level planning documents emphasize registries as key data repositories in health information exchange. Furthermore, CCRs can accelerate CER efforts and should facilitate efforts involving analyses of existing data. Concurrently, CCRs must continue to protect patient privacy and maintain the security of patient and provider data as continued public trust is essential. CCRs are well positioned to develop secure, innovative techniques for linking data from multiple databases, engaging holders of large datasets such as health insurers, healthcare providers and systems. Maintaining data quality while increasing data quantity poses challenges.