In any field of science, data takes center stage. In healthcare, data is utilized first and foremost to improve care and save lives. One of the most valuable tools clinicians can utilize when evaluating and improving outcomes in populations is a comprehensive patient registry. The term “registry” doesn’t refer to a single tool, but rather a complex system of data collection. This data is synthesized to provide real-time feedback and facilitate quality care coordination based on the entire population of patients used to develop that registry.
This may sound complex or boring, however put in simple terms, if the healthcare industry placed a greater emphasis on constructing patient registries to properly collect data we could end medical errors entirely.
Registries vary by the conditions of the populations they monitor and also by the organizations that develop them. There are a variety of registries that exist, but in the medical world we’re only concerned with patient registries -- those are registries containing health records of patients through their entire health history.
Patient registries provide useful information, but must be carefully monitored for accuracy as ineffective registries can lead to errors across the care continuum. These errors mostly occur in the interpretation of the data. Thus the value of a registry is defined by the quality and accuracy of its data. Information contained in the registry needs to be accurate and complete, otherwise it can lead to misinterpretation and administering incorrect or ineffective care.
Procedures need to be developed to ensure the collection of data isn’t corrupt, and if it is then to be able to identify where in the system the corruption took place and then correct it. The accuracy of data demands effective training of data collectors and also placing powerful checks in place to detect the errors. One example of procedures and checks is employing the use of random audits. The ultimate goal of all data collection in healthcare is to identify risk factors of faulty or inaccurate data. Simply put, when you know the factors, you can reduce the risks.
Registries aren’t immune to error. Historically, there is a tendency to design registry to gather generalized information. Unfortunately, real world patients rarely, if ever, can be effectively cared for solely based on generalized data. Therefore, patient registries should be developed with the patient in mind first. Healthcare practitioners need to assess the spectrum of data that can be collected at each stage of a patient’s clinical experience, and design registries using this criteria as a starting point. Specificity in data collection leads to a greater probability of identifying risk factors and improving care.
In addition to providing compromised care, using highly generalized information opens up the potential for ineligible patients to enter the registry and obscure the data. This problem creates an ineffective patient registry which not only degrades the quality of care for an entire population, but can also lead to high-risk situations and costly medical errors.
The easiest way to prevent these errors is to fashion checks through the entire cycle of data collection and reporting. In makes sense that checks are necessary from the very beginning of the data cycle, especially when it’s being entered to ensure data is being accurately recorded. Practitioners or data collectors must ensure the patient is providing the correct data and that the data entry person is inputting the correct data. Any misstep in this process can lead to costly errors down the line.
The same kinds of checks need to occur throughout the clinical process up to and including when data is analyzed. For example, when patient level reports are being generated to develop guidelines for healthcare providers.
Technological advancements have made it possible that feedback from registries can come in real-time. This real-time data can help healthcare providers in delivering more effective treatment. Those reports provide evidence for care delivery on the spot and also create an opportunity for patient education. This education ensures the patients are communicating more accurately what their symptoms are which leads to quality data and improved outcomes.
Another important use of patient registries comes when medical referrals are required in the patient’s care, especially when those patient handoffs and physician transfers occur within an institution. These handoffs are at risk to communication errors which can have adverse effects on a patient’s health. The use of a quality patient registry can help to ensure that those errors never occur.
The argument for the use of registries can be found in research conducted by Zurich University Hospital. Their findings concluded that a newly installed neurosurgery registry that monitored postoperative outcomes worked to streamline information flow on a clinical level, significantly influenced the clinical practice, and improved quality monitoring and patient communication. Their registry was successful in identifying complications early enough to take action. With sustained commitment to internal quality monitoring, organizations like theirs can see significant benefits in the efficacy of their practices.