Medical specialty societies and patient foundations aim to improve healthcare. Clinical registries are one of the greatest instruments that guide how best to do that.
Clinical data registries are also called patient registries and disease registries. Professional medical specialty societies tend to use the term clinical data registry, while research and patient foundations and government organizations lean toward patient registry. Because disease registries are condition-specific, that term is often used among industry organizations.
A registry transforms real-world healthcare data into real-world evidence. The purpose is to evaluate and improve outcomes for a patient population defined by a particular condition, disease, or exposure.
Specifically, registries track information about the health status of patients and the care they receive. They bring together large data sets and analyze trends or patterns in treatments and outcomes to help inform best practices, guidelines, and treatment decisions.
Over the past 40 years, registries have become a central resource for medical societies, physicians, and, increasingly, for patients too. The majority of the 46 medical society members of the Council for Medical Specialty Societies (CMSS) manage patient registries. These groups make an aggregate investment of approximately $500 million over five years, according to CMSS. 
So what impact do these registries have on healthcare? How do you know if your registry is measuring up to what a modern registry is capable of achieving?
To put it simply, a successful registry measurably improves patient care.
It could be met through quality improvement programs, clinical research, regulatory reporting, or informing health policy decisions. It could be done using huge volumes of data from a large set of physicians, health systems, and practices — or from a small, yet statistically significant, group of targeted participants. Either way, the first step to measuring registry ROI is knowing what you want to achieve and identifying how, where, and when you will measure your own results.
There are several key metrics you can use to determine your registry’s performance and value.
We separate these key metrics into performance metrics and results. Together, these tell a data-driven story of how well your registry is doing at achieving its objectives. They also provide useful data to inform future registry direction, enhancements, and changes.
These performance metrics help determine if your registry is off to the right start. Importantly, they are not an endpoint. Focusing on them alone will not guarantee you achieve your desired results.
For example, some registries have hundreds of sites participating and data for millions of patients or cases, but little to show in the way of results. They are focused on enrolling sites and getting data first, and the purpose value of the registry second.
You need to see the outputs — the results — of all of the inputs to evaluate your success.
These results fall into five primary categories: Engagement, Research, Quality Improvement, Population Health, and Business Outcomes.
User engagement metrics are a primary output of your registry. They signal to you whether those who have signed up for your registry are finding it useful.
You can use engagement metrics to understand how physicians and administrators are using your registry.
When data demonstrate methods for improving patient care, physicians, researchers, and end users are easily engaged. They actively use the registry to define new and well-supported best practice guidelines and to support high-quality research.
Administrative dashboards are useful tools for tracking registry engagement by presenting live data across a variety of metrics – from report utilization to end user support requests. The dashboards provide critical information to identify best practices and drive further registry enhancements.
Engagement metrics do not only apply to physicians and administrators. They also apply to patients and family members who participate in patient-reported outcomes surveys and other patient engagement programs.
Many registries leverage high-quality data and analytics to support research.
The results to measure here include:
As soon as your registry becomes productive, spread the news. Disseminate findings early and often. When physicians, researchers, industry, and patients hear the latest, they will engage, participate, and contribute.
Here are a few ideas for sharing research among your community:
Typically, measurable quality improvement is achieved through a combination of the registry and collaborative efforts across participating sites and physicians. Many of our medical specialty society registry customers adopt the Learning Health System model to achieve lasting quality improvement.
Quality improvement results include:
Population health initiatives allow you to improve health outcomes across all populations. This includes using registry data to identify needs, act to address outcome gaps, and evaluate population health initiatives to inform best practices. There are many key outputs that indicate how well your registry is advancing population health.
Evidence of success with population health initiatives includes:
The reality of running a registry is that it also affects your business operations. Whether you are a medical specialty society, patient foundation, or other healthcare association, your registry requires a strategic investment and a sustainable model to make it successful over the long term.
Business results for clinical and patient registries include:
Successful clinical registries are designed with all of this in mind.
There are a number of decisions—often made early on—that have a direct effect on the long-term success and sustainability of a registry. The technology you use to design and build the registry, your participation model, and data quality all affect your registry’s trajectory.
Before diving into it all, know this:
The single most important factor to registry success is knowing where you want to go. As the adage goes, “Begin with the end in mind.” Start there. Let your goals determine who participates, when and how you measure performance, and what data you use.
We take this approach with our customers by asking what you want to achieve and guiding you through a step-by-step process to design a registry with your goals in mind.
To help with this planning process, I have created a guide that you can use to set goals, identify metrics, and determine desired results for your registry. You’ll come away with a clear vision that sets your registry up for success.
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