The Continuity of Care Document, Research, and Public Health
The Continuity of Care Document, Research, and Public Health
The future challenge of clinical data exchange will be to create infrastructure where information can be rapidly accessed while retaining the privacy and security expected of medical records. The previously mentioned examples illustrate how public health authorities could use the CCD to work within established practices of identified health data collection, but local CCD aggregation provides an immediate alternative for data sharing within a provider network. A normalized database that assembles CCD extracts from heterogeneous EHRs could service quality measurement and internal reporting needs for integrated group practices and health systems (Figure 2). This avoids privacy restrictions as previous rulings exempt data sharing among integrated clinicians when engaged in quality improvement and population health. Emerging models of care, such as the Patient Centered Medical Home, also assume such exchange as a foundation for care coordination. CCD repositories could additionally serve regional and national efforts to improve care, such as clinical trial enrollment, disease registries, and comparative effectiveness research. A prototype of such a system, called popHealth, is being piloted, but more investment and development will be required for such projects to reach sustainable scale.
(Enlarge Image)
Figure 2.
How Continuity of Care Documents could enable normalized databases to advance medical research and public health.
Distributed normalized repositories based on the CCD also create opportunities for existing health information exchanges and public health agencies. Although more than 190 health information exchanges initiatives exist in the United States as of 2010, the majority do not store aggregate data because of concerns about patient privacy and data ownership. As consequence, they provide minimal support for medical researchers or epidemiologists. De-identification of CCD repositories or distributed queries of the databases could provide valuable information about population health without compromising patient confidentiality. Regional and national payers may also subsidize such initiatives if they can demonstrate care coordination improvements that lower overall cost. These avenues provide strategic alternatives for health information exchanges, many of which are in financial doubt because of the unwillingness of providers to pay for transactional information exchange.
CCD-based population analysis has clear limitations given the infancy of the standard. Until a large majority of health providers have adopted certified technology, there may be a selection bias in using CCD-data from early EHR adopters. In particular, physician practices with EHRs may under-represent Medicaid and uninsured populations and not be representative of all providers or patients. Fortunately, it is estimated that by 2019, 90%of ambulatory practices will be using EHRs capable of CCD production. CCDs generated from different EHRs also possess heterogeneity as the standard was not widely adopted with a robust reference library before EHR developers updated their software to meet federal interoperability standards. In addition, CCDs do not necessarily contain standardized information on care plans, immunizations, genomics, imaging procedures, or advance directives for the first stage of the federal incentive program. The CCD format is extensible, however, which provides a natural growth trajectory for these and other data as they become routinely encoded in medical records. Even with these limitations, the CCD provides a strong basis for population health research.
A logical next step for leaders in public health will be to pilot systems for CCD-based aggregation and create a facile environment for clinicians to adopt them. This requires consideration for how the CCD could bolster new efforts for disease management and possibly replace older methods for data submission. These efforts could kindle new cooperation between public health agencies, health information exchanges, and other parties involved with medical research. For these future CCD-based initiatives, however, careful consideration of patient privacy will be required. Although public health agencies have the statutory power to collect identified medical data, broader access to de-identified data will be vital to clinical research and comparative effectiveness studies. Public health and medical informatics professionals should advocate the advancement of pilot programs, de-identification methods, and that the CCD become a common tool for medical data far beyond individual provider communications.
Future of Clinical Data Exchange and Population Analysis
The future challenge of clinical data exchange will be to create infrastructure where information can be rapidly accessed while retaining the privacy and security expected of medical records. The previously mentioned examples illustrate how public health authorities could use the CCD to work within established practices of identified health data collection, but local CCD aggregation provides an immediate alternative for data sharing within a provider network. A normalized database that assembles CCD extracts from heterogeneous EHRs could service quality measurement and internal reporting needs for integrated group practices and health systems (Figure 2). This avoids privacy restrictions as previous rulings exempt data sharing among integrated clinicians when engaged in quality improvement and population health. Emerging models of care, such as the Patient Centered Medical Home, also assume such exchange as a foundation for care coordination. CCD repositories could additionally serve regional and national efforts to improve care, such as clinical trial enrollment, disease registries, and comparative effectiveness research. A prototype of such a system, called popHealth, is being piloted, but more investment and development will be required for such projects to reach sustainable scale.
(Enlarge Image)
Figure 2.
How Continuity of Care Documents could enable normalized databases to advance medical research and public health.
Distributed normalized repositories based on the CCD also create opportunities for existing health information exchanges and public health agencies. Although more than 190 health information exchanges initiatives exist in the United States as of 2010, the majority do not store aggregate data because of concerns about patient privacy and data ownership. As consequence, they provide minimal support for medical researchers or epidemiologists. De-identification of CCD repositories or distributed queries of the databases could provide valuable information about population health without compromising patient confidentiality. Regional and national payers may also subsidize such initiatives if they can demonstrate care coordination improvements that lower overall cost. These avenues provide strategic alternatives for health information exchanges, many of which are in financial doubt because of the unwillingness of providers to pay for transactional information exchange.
CCD-based population analysis has clear limitations given the infancy of the standard. Until a large majority of health providers have adopted certified technology, there may be a selection bias in using CCD-data from early EHR adopters. In particular, physician practices with EHRs may under-represent Medicaid and uninsured populations and not be representative of all providers or patients. Fortunately, it is estimated that by 2019, 90%of ambulatory practices will be using EHRs capable of CCD production. CCDs generated from different EHRs also possess heterogeneity as the standard was not widely adopted with a robust reference library before EHR developers updated their software to meet federal interoperability standards. In addition, CCDs do not necessarily contain standardized information on care plans, immunizations, genomics, imaging procedures, or advance directives for the first stage of the federal incentive program. The CCD format is extensible, however, which provides a natural growth trajectory for these and other data as they become routinely encoded in medical records. Even with these limitations, the CCD provides a strong basis for population health research.
A logical next step for leaders in public health will be to pilot systems for CCD-based aggregation and create a facile environment for clinicians to adopt them. This requires consideration for how the CCD could bolster new efforts for disease management and possibly replace older methods for data submission. These efforts could kindle new cooperation between public health agencies, health information exchanges, and other parties involved with medical research. For these future CCD-based initiatives, however, careful consideration of patient privacy will be required. Although public health agencies have the statutory power to collect identified medical data, broader access to de-identified data will be vital to clinical research and comparative effectiveness studies. Public health and medical informatics professionals should advocate the advancement of pilot programs, de-identification methods, and that the CCD become a common tool for medical data far beyond individual provider communications.
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