Medical specialty societies and patient foundations aim to improve healthcare. Patient registries are one of the greatest instruments that guide how best to do that.
A patient registry, also called a clinical data registry or disease 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.1
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?
What Is a Successful Patient Registry?
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.
What Are Key Metrics for Measuring Registry Success?
There are several key metrics to determine your registry’s performance and value.
We separate these key metrics into inputs and outputs. 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.
Registry Success: Inputs
- Number of participants
- Rate of participation growth
- Volume of quality data received
- Rate of data growth
- Valuable feedback from participants
These inputs help determine whether 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 on the outputs listed below. 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 in order to evaluate your success.
Registry Success: Outputs
- Level of registry engagement (sessions, report views, dashboard interactions)
- Number of published research articles using registry data
- Rate of published research using registry data
- Development of evidence-based care guidelines
- Trackable improved outcomes from compliance with evidence-based guidelines
- Volume and types of data that can be repackaged and commercialized for industry
These outputs fall into four primary categories: Engagement, Research, Quality Improvement, 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.
- Are they interacting with clinical outcome reports to identify best practices?
- In what ways are they drilling into reports to uncover trends and establish guidelines?
- When are they using predictive analytics and outcomes calculators for point-of-care and shared decision-making?
- How are they leveraging patient-reported outcomes (PROs) data?
- Are they likely to do well under Merit-based Incentive Payment System (MIPS)?
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.
- What percentage of patients have responded to PRO surveys?
- How are patients and physicians using information to support shared decision-making?
- What resources are patients accessing through their engagement dashboard?
Many registries leverage high-quality data and analytics to support research.
The outputs to measure here include:
- The frequency and volume of impactful publications using data-driven evidence from your registry.
- The speed to value your registry delivers in supporting active research. For example, ArborMetrix customers publish research in academic journals within 12 months of implementation go-live.
- The number of clinicians, researchers, or industry partners using your registry data as a foundation for registry-enhanced or registry-based clinical trials or post-market surveillance studies.
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:
- Make a library of research publications using registry data available on your registry website, and call out highlights on your home page. These are examples of research using data from our customers’ registries.
- Include registry-based research highlights in your member or community newsletter.
- Educate your member community and stakeholders about the findings of registry-based research during annual conferences, scientific meetings, and webinars.
- Share registry-based research publications on your social media profiles.
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 registry customers adopt the Learning Health System model to achieve lasting quality improvement.
Quality improvement outputs include:
- Development of evidence-based care guidelines
- Adherence evidence-based guidelines and best practices
- Trackable (and often published) improved outcomes from compliance with evidence-based guidelines
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 outputs for clinical and patient registries include:
- Amount of fees received from participating sites or physicians
- Amount of funding received from public and private grants
- Amount of revenue received from other sources, like industry partners who either sponsor part of your registry program or purchase data and reports
Successful clinical registries are designed with all of this in mind.
- How will your registry provide enough value and day-to-day utility to justify member or site fees, and/or how will you design a program that provides value to other industry stakeholders?
- How will your registry enable you to leverage partnerships that remove the financial burden for ongoing maintenance and innovation?
- What role does or could your registry play in supporting industry-driven research and development to track, document, and improve the safety and effectiveness of medical devices and therapies?
How Do I Achieve Success With My Registry?
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 that you use, 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.
1. "Engaging Patients in Clinical Registries." Council for Medical Specialty Societies. November 2019.