Clinical data registries are databases of health information on many different patients who share a common factor. Clinical data registries have been organized around many topics, including disease or condition (i.e. Alzheimer’s, breast cancer), procedure (i.e. thoracic surgery), and device (i.e. joint replacements).
Clinical data registries can be beneficial to practices of all sizes, from small private practices to large hospitals. While a relatively new concept, data registries are poised to play a bigger and bigger role in healthcare in the coming decade. In this guide, we’ll dive into how clinical registries can benefit clinicians and patients and explore how they are different from electronic health records.
What Are the Benefits of Clinical Health Registries?
The information in a data registry is used to help clinicians choose the most effective course of treatment for patients suffering from the same disease or condition. It also allows clinicians to investigate trends in the patient population in real time — for instance, seeing if a new therapy is effective or not when compared to existing treatments. Registries are important because they improve the quality and safety of care, leading to better patient outcomes.
Clinical data registries are usually maintained by third parties, such as government groups, non-profit organizations, academic research groups, and other similar organizations. Data is submitted to the clinical registries by a physician or their staff. The data is anonymized and sometimes encrypted to protect patient privacy and company with relevant laws. Survey data submitted by patients may also be added to the database as an additional component, to include the patient’s perspective.
How Can Data Registries Be Used in a Private Practice?
Naturally, the first question that private practice clinicians ask is: how can this be helpful to me? First of all, clinical data registries allow providers to get aggregated insights that are far more expansive than the limited number of patients they can treat in a private practice setting. Even a large, well-staffed private practice with multiple locations still will not be able to see a fraction of the patients that can be recorded in an anonymous clinical registry.
This is important because healthcare trends that may not be visible within the limited scope of a private practice are visible and even obvious in the wider scope of a clinical data registry. Data registries help physicians choose the most effective care by looking at trends over time across hundreds or thousands of patients with the exact same condition or disease. A patient case that seems to be an unexplained outlier within the limited patient pool of a private practice may actually have similarities to multiple entries in a clinical registry.
Clinical registries also help physicians stay up to date on device recalls and other important events as well as what effects these have on patients. Further, data registries centralize all information from different providers and facilities into one place, so you’re not confined to just your private practice — you can track patient outcomes across the entire healthcare system, which is key since patients rarely get all their care from one provider or hospital network.
Clinical Data Registries vs. Electronic Health Records
On the surface, clinical data registries do bear certain similarities to electronic health record companies (EHRs) such as Cerner and Epic, leading clinicians to wonder what extra benefits data registries provide. To start off, EHRs are very focused on the individual visits, while data registries look at the overall patient care journey across time and facilities.
Secondly, EHRs are more confined to whatever facility or hospital network uses them. If information is needed at a secondary facility, the original one must transfer the EHR files. This contrasts with a data registry, where the same is used by many facilities all over the country and even sometimes the world.
Patient data is also anonymized in data registries, so a clinician can’t look up care details for a specific person. This contrasts the purpose of EHRs, which are designed to store an electronic paper trail for each individual patient. Essentially, EHRs can be conceived of as a detailed, personal internal registry, as opposed to a depersonalized external clinical data registry.
How Can Clinical Data Registries and EMRs Work Together?
While clinical data registries and EHRs each serve a distinct purpose, there are some opportunities for ways they can work together. EHRs are a vast treasure of information, but they aren’t synced together, so none of this data can be aggregated and analyzed for overall trends.
This is less than ideal because a lot of the information that gets input into EHR is a duplicate of what goes into clinical data registries. Thus, inputting data into both systems involves a certain amount of redundancy, which is an issue for overworked clinical staff who already spend many hours on filing and paperwork each week. If the same information could be input once, then correctly routed to either an EHR or a data registry (or both), that would help eliminate duplicate work and make it easier to add to clinical data registries.
In fact, there have already been some initial forays into trying to turn EHR health data into something that would be useable for a clinical registry. Indeed, Epic software — one of the largest EHR companies in the United States — is now advertising its “Cosmos” feature, which includes data points from 120 million patients across 800 hospitals and 10,000 clinics.
Now that most hospitals and clinicals have completed their transition to electronic health records, integration between EHRs and clinical data registries will likely be a major healthcare technology trend to look out for in the next 5-10 years. Since clinical data registries are also a relatively new concept, as they continue to develop and evolve over time, that will also have an effect on potential integrations with EHRs.
One major concern about integrating EHRs and clinical data registries is patient privacy. EHR information needs to be attached to an individual patient, while clinical registry data must be anonymized. How will the patient data be protected and encrypted when it gets transferred from an EHR to a data registry? Expect to see more debates on this as we get further into the 2020s.
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