Patient registries are the collection of secondary data related to patients with a specific diagnosis, condition, or procedure. They are an invaluable source of information, which help decipher the huge volume of diverse healthcare data, and help improve the quality of care provided.
From the research and clinical perspective, patient registries contribute to not just the understanding of diseases and conditions but also helps improve care pathways and advice to patients more accurate.
There are many ways to use this collection of uniform data, particularly disease or condition-specific registries, but each registry also presents unique technical challenges.
But before we explore those, let’s better understand clinical registries and their significant role in improving healthcare.
Understanding Patient Registries
Patient registries are centralized databases that collect information about a patient community with a specific condition.
These patient registries collect a wide range of information which includes clinical history, medical care, diagnostic results, patient demographics and other relevant information like health outcomes and complications.
Unlike product registries, which by definition, focus on patients treated with a particular medical product, patient registries include anyone who has had or currently has a condition and are not limited to specific treatments or medications. We use them to “prospectively collect, analyze and disseminate data on a group of patients with specific characteristics in common.”
Therefore, collecting healthcare data with registries is critical. Their importance is entrenched in their use, intended for several purposes, powered by the data these patient registries provide.
Different ways to use patient registries include:
- Aiding clinical trials to learn more about a certain disease or condition
- Learn about factors associated with disease development
- Informs routine clinical practice and disease management
- Support facilitation of quality healthcare by monitoring outcomes and studying best practices in patient care.
Patient Registries Providing the Opportunity to Improve the Healthcare System
With patient registries serving as a single collection point of valuable data from healthcare providers, monitoring coverage of interventions and the healthcare providers’ performance evaluation mechanism, they provide the opportunity to improve the healthcare system altogether.
Some highlights of the many ways patient registries do this are listed below.
- Relevant data in one place. We can find relevant information regarding specific disease conditions and personal information and history of all patients in one place.
- Improved healthcare. As we design most clinical registries for specific disease conditions, they contain important information and natural history, which allows for improving care pathways and accurate advice to patients. All factors which affect life expectancy because of raised standards of healthcare.
- Active surveillance. One of the primary advantages and purposes of clinical registries is to monitor and measure safety and harm.
- Measuring quality of care. These clinical registries may measure quality of care, which is defined by the National Academy of Medicine as “the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge.”
- Data sharing made easy. Patient registries facilitate cooperation for legal sharing of data with the objective of health advancement, particularly in cases of rare diseases.
- Monitor trends. Broad registries containing data from around the country or the globe can provide health outcome data needed to monitor patient needs and identify problems that require prompt attention.
- Analysis of Interventions. It facilitates analyzing interventions and their efficiency measures. Access to reliable, relevant data can help clinicians in not just creating effective healthcare plans and interventions that can produce better outcomes for their patients but also analyzing them and their efficiency measures. It informs on areas of concerns like factors which influence prognosis and quality of life, and highlights progress with treatment.
- Identifying patients for clinical trials. Readily available data in electronic clinical registries make it easy and quick to identify patients that qualify for clinical trials.
- Saves time and healthcare costs. Having data guide clinical trials, treatment plans, prognosis complemented by other timely information. It helps save both time and healthcare-related costs, particularly when investing in treatment products.
Clinical registries are indispensable given their role in improving health outcomes and reducing cost of healthcare. Throughout their utilization in monitoring quality of care given, creating feedback loops, benchmarking performance, describing treatment patterns, reducing variation and as a tool for clinical research.
Impact of Cardiovascular Registries on Patient Outcomes
Cardiovascular registries are valuable for hospitals and clinical practices for supporting local quality improvement.
For patients with cardiac disease, cardiac registries document diagnostic cardiac catheterization and percutaneous coronary interventions for evaluation and treatment reasons.
Given the costs, high utilization rate, and complications, cardiovascular procedures are monitored very closely and regularly measured against national benchmark databases and public reports.
Cardiovascular registries, given the condition’s sensitivity and complexity, provide a wealth of knowledge for patients, healthcare providers and clinical researchers.
The American College of Cardiology (ACC) works closely with its partner organizations in cardiovascular care towards the purpose of creating a cohesive source of vascular disease data. By combining vascular disease data in cardiovascular registries, it is providing uniform, actionable information to physicians and health systems.
We focus cardiovascular registries towards optimizing care, and outcomes powered by innovation and knowledge. The ACC and its thousands of members work towards transforming cardiovascular care and improving heart health.
For this purpose it sets stringent qualification criteria for accreditation, creates health policy, standards and guidelines, and operates national cardiovascular registries to measure and improve cardiovascular care.
The National Cardiovascular Data Registry (NCDR) which is the ACCs’ suite of data registries is helping hospitals, health systems and practices measure and improve the quality of cardiovascular care they provide.
This comprehensive network of cardiovascular care providers is committed to ensuring evidence-based care, improving patient outcomes and reducing healthcare costs.
These cardiovascular registries do this by promoting “quality improvement through the collection and use of clinical data for benchmarking, as well as linked quality tools and quality initiatives, education, and outcomes research.
Hospitals and clinical practices taking part in NCDR can achieve healthcare that is effective, fair, efficient, safe, timely and patient-centered.
2,400+ hospitals and 2,000+ outpatient providers worldwide take part in NCDR programs which contribute millions of patient records. Some registries that fall under the clinical areas NCDR covers are Chest Pain-MI and CathPCI registries.
An example of how important and forward thinking these registries can be gathered from the ACC’s decision to collect COVID-19 data through NCDR Chest Pain-MI and CathPCI registries to capture the relationship between the virus and heart disease to understand cardiac impact of the virus.
These registries makes all this possible because of using clinical data for benchmarking against current professional standards, continuously linking measurement to performance improvement and performance reporting, using the resources of NCDR and partner organizations.
Infrastructure like the NCDR and Cardiac Catheterization Laboratory Continuous Quality Improvement Toolkit (CathKIT) serve the purpose of providing healthcare providers with methods and standards for measurement reporting and tools to assist them in continuously making improvements to the quality of care and patient outcomes.
AI Helping Automate Cardiovascular Registries
While established that patient and cardiovascular registries can have a significant impact on improving patient outcomes, there are limitations of conventional methods.
Some of these are:
- Quality of data and collection methods: Patient registries are only as good and as valuable as the data collection method involved. It is essential that this collection process is robust and all relevant outcomes are defined appropriately.
- Incorrect or missing data: If there is missing data or incorrect information has been collected, then overall quality of the data sample can be affected.
- Investment of time and resources. Data collection and reporting requires commitment and engagement from participating healthcare providers. Any lag in data collection has the possibility of rendering it out of date.
- Lack of uniformity and standardization. The different data collection standards across hospitals and health systems can hamper pooling of data across registries.
Given that typically healthcare organizations and systems use human resources dedicated to updating these registries, clinical abstraction and all other related processes put a strain on an organization’s resources.
Also, this means that personnel dedicated to data collection and analysis could affect the time and quality of care provided to patients.
Therefore, more and more healthcare providers are looking to automate this process by opting for AI backed services like Atlas to do this job for them in a much faster and reliable manner.
Leveraging AI to handle clinical registries, which are typically handled by professionals throughout all stages from collection to management, makes this data more reliable and minimizes human error. Smarter clinical registries allow for faster processing and analyses with higher accuracy.
Clinical registries, including condition specific industries like cardiovascular registries are sources of information for regulators that are drawn upon for high-impact decision making.
Automation can speed up the work of registry abstraction, improve data accuracy, on top of helping the healthcare provider reduce strain on time and resources.
It makes this even easier with advances in natural language processing that makes it possible to automate much of the more complex searches requiring looking through various documents like EHRs, clinical notes and other sources of information.
With AI powered technological products like Carta Healthcare’s suite of solutions, patient data can become uniform. This standardization of data and significant reduction of human labour promised by AI solutions ensures accuracy and reliability of data in capturing characteristics, treatments and patient outcomes.
The result — Smart solutions use clinical data to update cardiovascular registries to track cardiac procedures and interventions, deploying it to improve patient care and reducing risk of cardiac conditions. All while informing research on newer intervention and procedures.
How Carta Healthcare Supports Facilitation of Quality Healthcare
According to the National Institutes of Health, Registries:
- Can be used to recruit patients for clinical trials to learn about a particular disease or condition;
- Provide data to develop therapeutics or to learn about population behavior patterns and their association with disease development;
- Help develop research hypotheses;
- Support the enhancement and facilitation of quality health care.
Carta Healthcare helps reduce the expense of registry participation with more accurate and efficient submission with our AI supported abstraction team. These registries allow healthcare providers to set up a virtuous feedback cycle, improving quality initiatives and patient care.
Our AI assisted abstraction solution is being used by leading practitioners to improve their data efficiency, while reducing labour cost.