Month: March 2021

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. [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 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 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.

Registry Success: Performance Metrics

• Number of participants
• Rate of participation growth
• Volume of quality data received
• Rate of data growth
• Valuable feedback from participants

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.

Registry Success: Measurable Results

• 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
• Using registry data to shape healthcare policy and advance health equity
• Volume and types of data that can be repackaged and commercialized for industry

These results fall into five primary categories: Engagement, Research, Quality Improvement, Population Health, and Business Outcomes.

Engagement

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?

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.

Patient Engagement

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?

Research

Many registries leverage high-quality data and analytics to support research.

The results 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.

Quality Improvement

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:

• Development of evidence-based care guidelines.
• Adherence to evidence-based guidelines and best practices.
• Trackable (and often published) improved outcomes from compliance with evidence-based guidelines.

Population Health

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:

• Increase in engagement with initiatives aimed at addressing health disparities.
• Collaborative sharing of best practices to advance health equity.
• Increase in use of patient social risk factor data to improve care decisions.
• Growth of population health insights used to shape healthcare policy.

Business

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:

• 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 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.

Improving care seems like a monumental undertaking. It sounds expensive. It sounds overwhelming. But the good news is, if you have a clinical data registry, improving healthcare delivery and advancing research has never been more achievable.

Here are three technology essentials to consider when designing, building, and managing a clinical registry that will get you moving closer to measuring and improving care.

Using Healthcare Analytics for Clinical Registries

Running a successful clinical registry, also called a patient registry or disease registry, is a significant undertaking that requires the right technology and the right approach. Today’s most valued and most effective registries use healthcare analytics that go beyond data hoarding and warehousing, and set the stage to play a crucial role in advancing care and research.

Specifically, registry technology should cover three essentials:

1. Integrate: Efficiently and securely acquiring and validating healthcare data from various sources.
2. Identify: Advanced analytics are used for building trust in the data and uncovering drivers of outcome and variation.
3. Inform: Delivering insights via interactive reports and tools that inspire data-driven action.

3 Keys of Registry Technology

1. Integrate: Collecting and Validating Data with Clinical Registry Software

Successful data acquisition creates a complete (and sometimes large) data set. Key aspects of this step include data sources, data integration technologies, and validating data for quality.

Registry Data Sources

Registries that achieve measurable results rely on a diverse and complete data set. They harmonize data from many sources, including:

• Clinical data from electronic health records (EHRs) and case report forms (eCRFs).
• Patient-generated data from patient-reported outcome (PRO) surveys.
• Cost and utilization data from claims and public datasets.
• Public health data from various government data sources.

Data Integration Technologies

In order to drive participation and value, registries must use efficient electronic data collection methods that ingest, validate, and transform data into a high-quality asset.

• Ingest: Deploy standards-based, vendor-specific, and custom connectors to ensure interoperability across EHR and other systems and sources.
• Validate: Ensure data completeness, correctness, and accuracy.
• Transform: Assemble and organize data into a single consistent representation.

Importantly, successful registries should base their data acquisition strategy on their goals and purpose – not just the data most readily or easily available to them. Focusing on what you need rather than on what you can get will point your registry in the most successful direction.

2. Identify: Analyzing Healthcare Data to Uncover Opportunities

Applying advanced analytics ensures data and reports are credible and trusted. When it comes to building engagement in trusted data, analytics make the difference. Here are a few specific methodological and statistical tools your registry should use.

Risk Adjustment

Risk adjustment is a process that corrects for the severity of a patient’s illness. Adjusting for risk levels the playing field and ensures that comparisons of hospitals and clinicians are fair and accurate. For example, our registries use scientifically and clinically validated statistical risk models to evaluate – in real-time – all factors related to each outcome. This builds trust.

Reliability Adjustment

In healthcare quality measurement, when sample sizes for a hospital or clinician are small, the observed rates or rare outcomes may be due to chance and should be considered less precise than rates based on larger sample sizes. Reliability adjustment is a statistical technique that is designed to isolate the signal and reduce the noise in your dataset. Specifically, our methods will determine whether outcomes are due to chance or true differences in quality.

If you want to learn more about risk and reliability adjustment, check out this post: What Are Risk and Reliability Adjustment and Why Do They Matter?

Benchmarking

Healthcare benchmarking means comparing a hospital or practice, or clinician, to others. Your registry should provide benchmarking based on patient characteristics, condition, geography, facility type, or other meaningful groups. It’s smart to also blind these benchmarks to protect privacy while still supporting effective measurement.

Peer Group Definition

Peer groups are an important part of benchmarking. Look for reporting and peer benchmarking capabilities at the clinician, practice, multi-practice, multi-facility, and organization levels.

If you want to learn more about benchmarking in healthcare, check out this post: What Is Healthcare Benchmarking?

3. Inform: Delivering Insights and Leveraging Evidence

While leveraging analytics and data science unleashes the value of your registry data, making those insights and reports accessible, engaging, and easily understood unlocks exponential value for your organization.

To make those insights as valuable as possible, aim to prioritize the user experience. You’ll want to think of your registry participants and end users as people who have a wide exposure to a variety of digital experiences. That means that when it comes to engaging with your registry, participants:

• Expect the same technological experience as their favorite apps or websites.
• Share and/or use information when it is convenient and compelling.
• Need their experience to be valuable.

When you focus on user experience, it ensures that every person can get value from the data, whether their needs are simple or complex. We’ve designed reporting features in our registry platform to drive engagement and support data-driven decision making. A few of the specific reporting features we use in our registry platform to drive patient engagement and support analysis include:

• Intuitive Views: Analyze data at the patient, provider, or site level, either individually or in aggregate.
• Flexible Interaction: Explore data at a deep clinical level by creating custom patient cohorts, analyzing case-level details, and drawing correlations within and across diagnoses.
• Personalized Visualizations: Perform complex analyses and create powerful visualizations using embedded Tableau.
• Custom Queries: Extract raw or analyzed data for special research projects or reports.

If you want to learn more about our user-centered approach to healthcare analytics software design, check out this post: Designing Healthcare Analytics to Engage Clinicians.

Registry Analytics Checklist

How do you use analytics to ensure measurement is fair, trusted, and engaging?

‍Download this checklist to help you evaluate your registry analytics.

Other Interactive Experiences for Registries

Beyond reporting and data visualizations, registries can harness emerging tools and technologies to add utility and value to their programs.

Patient Engagement and Patient-Reported Outcomes

Patient data informs a more complete view of quality, smoothing the gaps between clinical visits documented in the EHR, and helps you achieve even greater results. Modern patient-reported outcomes surveys and engagement tools allow you to collect the right data from the right patient at the right time.

Clinical Decision Support

Bringing together clinical data and patient-reported outcomes creates a powerful asset. Outcomes calculators use predictive analytics to intelligently combine registry data to predict outcomes, risks, and results of procedures, therapies, and treatments. This enables physicians to make data-driven decisions and empowers patients to engage in informed conversations about their outcomes.

Putting It All Together

These three essential steps to a successful registry are complex but achievable. ArborMetrix has built strong partnerships with our clients that put acquiring, organizing, analyzing, and acting on data at the center of their registry strategy.

Our clinical registry platform and our strategy and partnership, put these goals in their grasp. We bring our proven strengths in delivering clinical data registries that lead to scientific findings and actionable insights that have a real impact on real people.