Sustainable Practice: Rethinking Registries to Support Value-Based Care
Published on March 4, 2020
By Kasia Januszewski & Chrystal Price
As the future of medicine leads us down a path of value-based care, the way we think about and use registries is also in need of modernization.
The healthcare landscape has led to CMS and other payers holding physicians accountable for adhering to various quality measures. Beyond capturing narrow quality measures for current pay-for-performance arrangements, registries support the development of outcome measures that are clinically relevant and meaningful to patients, and can provide the tools necessary to adapt practice processes to mitigate the effects of capitation and other risk-bearing reimbursement. New therapies and drugs also can be developed through registry data.
However, this is only possible if registries are designed to provide the necessary data to support these complex activities, and that such data is accessible, timely and accurate across organizations and platforms.
In this article, we discuss emerging quality and financial needs registries can address, what they need to succeed, and how to overcome some obstacles to making registries more sustainable.
The Future of Registries
Registries are a valuable tool to clinicians and medical societies, particularly when viewed as a platform that can be sustained and strengthened by diversifying the kinds of data collected and how they are used. Registries can help practices transform to meet the changing payment environment by helping communicate medical and scientific findings to stakeholders, by enabling multi-stakeholder collaboration, as well as assisting with collecting information directly at the point of care and offering clinical decision support at a level of clinically relevant detail that administrative or clinical trials data cannot match.
While there is an ongoing focus on outcome measures as the gold standard of healthcare quality measurement, both process measures and outcomes measures are essential to driving improvement. “Registries [also] provide the vehicle across multiple areas to aggregate and most importantly benchmark performance, when used in the ideal space,” said Adam Weinstein, MD, Chair, Renal Physicians Association Clinical Data Registry Workgroup.
“[In] a world of various accountable care organizations or other capitated payment models, you still need metrics that are both process and outcome metrics, some of which will be prescribed specifically by the program, but many of which are interim steps on the way to accomplishing the goals of a larger program,” Dr. Weinstein said. “So, for instance, if you’re going to say, ‘We want to make sure that all adults delay the onset of preventable cancers, yet have minimal hospitalizations and minimal ER visits as the outcomes,’ there’s a whole series of things you need to do before that, like screen for cancers, make sure they get their flu vaccine, you know, all the standard primary care stuff. And so, even if those measures, the flu vaccine, the screening, and all that stuff are not qualified measures as part of the program you still need to do those things to get to the endpoint of the program.”
Future registries have the potential to be more involved at the point of care. While the current focus of registries trends toward compliance and reimbursement, these provide only a surface-level example of what well-developed registries are capable of. Registries are a powerhouse of data, particularly standardized data, which can greatly assist clinicians with decisions at the point of care. Algorithms can be used around specific types of episodes of care, since the information is far more detailed and much broader in scope than administrative claims data or data gathered in clinical trials.
What Registries Need to Succeed
In order to be successful, there are several factors for registry stewards to consider.
“Registries provide value across strategic priorities like quality improvement, clinical research, value-based payment, and therapeutic development and post-market surveillance,” said Kurt Skifstad, Ph.D., Chief Executive Officer, ArborMetrix. “To achieve this, they must maintain a high quality, real-world data set. Getting there requires three key factors: Acquiring the data, transforming the data, and leveraging the data through interactive reports and tools.”
Data collection and interoperability have been a critical topic for the past few years. “We see best practice as integrating high-quality data from a variety of sources including the medical record, payers, other registries and patient themselves,” Dr. Skifstad said. “Key to success with data collection is to make this process efficient, secure, and scalable by using industry standards like FHIR that support interoperability while minimizing the burden of sharing data and participating in registry programs.”
Collecting the data is only the first part. “Registries then need to validate the data, transform it, and apply models that turn that information into useful metrics and reports for clinicians and other stakeholders,” he said.
As healthcare becomes more data-driven, registries can respond better than other systems by design. “Registries are uniquely valuable in the quality of data and interesting trends they reveal,” Dr. Skifstad said. “They are only going to play a larger role in healthcare going forward. Data creates evidence, and evidence drives progress. Registries are the tool to get us there.”
Obstacles Registries Face
Registries face multiple threats to their sustainability with data governance, data collection burden, interoperability, and changes to quality measurement programs being amongst the largest. Addressing these items is crucial to allowing registries to use their valuable data for multiple purposes, therefore prolonging the life of the registry. According to a series of focus groups conducted by the National Quality Registry Network (NQRN), a majority of participants agree that clashing internal processes governing the way registries are designed and how data is collected have led to a proliferation of registries with incompatible measures and data elements making interoperability difficult.
Contractual and structural issues with data extraction from EHRs has created a lack of interoperable data, as well, and contributes to additional burden through manual data abstraction and poor data quality. Electronic data resources that produce high quality data via auto-extraction, as well as administrative support for those resources need to be standardized and implemented across the board in order to create a cohesive, standardized system that produces quality data.
In addition to issues with internal registry processes, a registry’s business model creates another layer of challenges to sustainability and diversification. “Many registries are tasked with participating in unfunded programs to support their membership, which strains an organization’s resources,” said Chrystal Price, Associate Director, Registry Programs. Operating registries in isolation incurs more expenses, and the question asked by specialty societies becomes, “How can we work together to reduce some of the cost?”
As the demand for data increases, existing funding remains stagnant and diversifying sources of revenue is paramount to survival. Offering registry access for free is not a sustainable business model when the platform requires constant updating in order to remain relevant. “Historically, registries were not developed to be revenue-generating or even budget-neutral. Considering that registries must constantly evolve to respond to changes in the healthcare quality landscape, registry providers must frequently review their business case and business model to figure out how to still be considered relevant enough for someone to pay for,” said Ms. Price.
In support of registries rethinking their business model, NQRN has developed a Registry Business Case tool that aids organizations in thinking through ways to sustain their registries.
The obstacles involved in making registries successful are formidable but not insurmountable. Streamlining internal processes, standardizing data and partnering with like-minded organizations will make registries a valuable asset in the quest to deliver better measures, better outcomes and better care for all.
Published on March 4, 2020
By Kasia Januszewski & Chrystal Price
As the future of medicine leads us down a path of value-based care, the way we think about and use registries is also in need of modernization.
The healthcare landscape has led to CMS and other payers holding physicians accountable for adhering to various quality measures. Beyond capturing narrow quality measures for current pay-for-performance arrangements, registries support the development of outcome measures that are clinically relevant and meaningful to patients, and can provide the tools necessary to adapt practice processes to mitigate the effects of capitation and other risk-bearing reimbursement. New therapies and drugs also can be developed through registry data.
However, this is only possible if registries are designed to provide the necessary data to support these complex activities, and that such data is accessible, timely and accurate across organizations and platforms.
In this article, we discuss emerging quality and financial needs registries can address, what they need to succeed, and how to overcome some obstacles to making registries more sustainable.
The Future of Registries
Registries are a valuable tool to clinicians and medical societies, particularly when viewed as a platform that can be sustained and strengthened by diversifying the kinds of data collected and how they are used. Registries can help practices transform to meet the changing payment environment by helping communicate medical and scientific findings to stakeholders, by enabling multi-stakeholder collaboration, as well as assisting with collecting information directly at the point of care and offering clinical decision support at a level of clinically relevant detail that administrative or clinical trials data cannot match.
While there is an ongoing focus on outcome measures as the gold standard of healthcare quality measurement, both process measures and outcomes measures are essential to driving improvement. “Registries [also] provide the vehicle across multiple areas to aggregate and most importantly benchmark performance, when used in the ideal space,” said Adam Weinstein, MD, Chair, Renal Physicians Association Clinical Data Registry Workgroup.
“[In] a world of various accountable care organizations or other capitated payment models, you still need metrics that are both process and outcome metrics, some of which will be prescribed specifically by the program, but many of which are interim steps on the way to accomplishing the goals of a larger program,” Dr. Weinstein said. “So, for instance, if you’re going to say, ‘We want to make sure that all adults delay the onset of preventable cancers, yet have minimal hospitalizations and minimal ER visits as the outcomes,’ there’s a whole series of things you need to do before that, like screen for cancers, make sure they get their flu vaccine, you know, all the standard primary care stuff. And so, even if those measures, the flu vaccine, the screening, and all that stuff are not qualified measures as part of the program you still need to do those things to get to the endpoint of the program.”
Future registries have the potential to be more involved at the point of care. While the current focus of registries trends toward compliance and reimbursement, these provide only a surface-level example of what well-developed registries are capable of. Registries are a powerhouse of data, particularly standardized data, which can greatly assist clinicians with decisions at the point of care. Algorithms can be used around specific types of episodes of care, since the information is far more detailed and much broader in scope than administrative claims data or data gathered in clinical trials.
What Registries Need to Succeed
In order to be successful, there are several factors for registry stewards to consider.
“Registries provide value across strategic priorities like quality improvement, clinical research, value-based payment, and therapeutic development and post-market surveillance,” said Kurt Skifstad, Ph.D., Chief Executive Officer, ArborMetrix. “To achieve this, they must maintain a high quality, real-world data set. Getting there requires three key factors: Acquiring the data, transforming the data, and leveraging the data through interactive reports and tools.”
Data collection and interoperability have been a critical topic for the past few years. “We see best practice as integrating high-quality data from a variety of sources including the medical record, payers, other registries and patient themselves,” Dr. Skifstad said. “Key to success with data collection is to make this process efficient, secure, and scalable by using industry standards like FHIR that support interoperability while minimizing the burden of sharing data and participating in registry programs.”
Collecting the data is only the first part. “Registries then need to validate the data, transform it, and apply models that turn that information into useful metrics and reports for clinicians and other stakeholders,” he said.
As healthcare becomes more data-driven, registries can respond better than other systems by design. “Registries are uniquely valuable in the quality of data and interesting trends they reveal,” Dr. Skifstad said. “They are only going to play a larger role in healthcare going forward. Data creates evidence, and evidence drives progress. Registries are the tool to get us there.”
Obstacles Registries Face
Registries face multiple threats to their sustainability with data governance, data collection burden, interoperability, and changes to quality measurement programs being amongst the largest. Addressing these items is crucial to allowing registries to use their valuable data for multiple purposes, therefore prolonging the life of the registry. According to a series of focus groups conducted by the National Quality Registry Network (NQRN), a majority of participants agree that clashing internal processes governing the way registries are designed and how data is collected have led to a proliferation of registries with incompatible measures and data elements making interoperability difficult.
Contractual and structural issues with data extraction from EHRs has created a lack of interoperable data, as well, and contributes to additional burden through manual data abstraction and poor data quality. Electronic data resources that produce high quality data via auto-extraction, as well as administrative support for those resources need to be standardized and implemented across the board in order to create a cohesive, standardized system that produces quality data.
In addition to issues with internal registry processes, a registry’s business model creates another layer of challenges to sustainability and diversification. “Many registries are tasked with participating in unfunded programs to support their membership, which strains an organization’s resources,” said Chrystal Price, Associate Director, Registry Programs. Operating registries in isolation incurs more expenses, and the question asked by specialty societies becomes, “How can we work together to reduce some of the cost?”
As the demand for data increases, existing funding remains stagnant and diversifying sources of revenue is paramount to survival. Offering registry access for free is not a sustainable business model when the platform requires constant updating in order to remain relevant. “Historically, registries were not developed to be revenue-generating or even budget-neutral. Considering that registries must constantly evolve to respond to changes in the healthcare quality landscape, registry providers must frequently review their business case and business model to figure out how to still be considered relevant enough for someone to pay for,” said Ms. Price.
In support of registries rethinking their business model, NQRN has developed a Registry Business Case tool that aids organizations in thinking through ways to sustain their registries.
The obstacles involved in making registries successful are formidable but not insurmountable. Streamlining internal processes, standardizing data and partnering with like-minded organizations will make registries a valuable asset in the quest to deliver better measures, better outcomes and better care for all.