Here at ArborMetrix, we’re focused on creating and delivering powerful product roadmaps that align with the industry and the needs of our clients and partners. These roadmaps help prioritize work, set expectations, and point us ever forward, toward our long-term vision.
But, roadmaps aren’t simply our own internal tools. We often provide roadmaps to our customers for their clinical registries. These plans outline how to take their data and software assets to the next levels for their populations. To be effective long term, your registry must continually evolve to address the growing needs of your clinician and patient populations.
Clinical registries exist on a scale of momentum that spans three stages:
- Foundational
- Intermediate
- Advanced
We guide our registry partners through each stage and set a strategic plan to help them progress to their ultimate goals.
Foundational Registry Momentum: Data Submission, Data Quality Review, Standard Reporting
Foundational registry momentum is defined by the compelling business and market needs that drive a registry’s framework. Often the impetus is collecting data for regulatory or post-market reporting, with features that include:
- Collecting data through a variety of channels and formats.
- Ensuring data is high quality through a robust data dictionary and supporting validation logic.
- Standard report sets that support participation incentives – such as member performance through MIPS reporting, or device performance through post-market surveillance activities, among many others.
The Foundation stage is important because it serves to get data in the registry and drives membership and participation from affiliated organizations and clinicians. Most new registries achieve these goals within the first six months of launch.
However, if your registry launched a few years ago and you are feeling like your momentum is “stuck” or “limited” by not progressing past the Foundational stage, you’re not alone. This is a common situation that you can remedy with the right approach and technology.
Let’s continue with MIPS reporting as an example. Data required to support MIPS is not very rich, and users do not need to interact with a MIPS registry more than a few times a year. This process must be simple and convenient for users but does not drive deep engagement.
To get past this, identify new or additional goals and programs that your registry can achieve and support. This will move your registry forward and expand its value.
Intermediate Registry Momentum: Clinician Performance, Quality Improvement, Patient Engagement
The momentum of your registry is truly unleashed when it builds deeper engagement.
This begins when it is used to highlight and change behavior. Our registry product and services are purpose-built for deep analytics and actionable insights related to measurable clinician and device performance, quality improvement, and patient engagement.
- Clinicians and industry stakeholders engage when the registry can be used to highlight their performance relative to peers and within their health system or specialty.
- Quality improvement is realized when the registry can indicate areas where treatments and interventions can be improved, and where guideline adherence is tracked and analyzed for impact.
- Patients engage when they are given the opportunity to safely share their health and quality of life related to diagnoses, treatments, and interventions, and know that data can be used in shared decision making.
Most of our clients spend a significant portion of their registry’s lifecycle building and growing these intermediate assets. This starts with our goals-oriented implementation process. These features can propel the momentum into new and relevant measurement areas and reporting domains that keep a registry fresh and engaging over time.
Advanced Registry Momentum: Publish and Predict
Finally, let’s talk about the hallmark of registry success: The ability to use it as a platform to publish research and clinical practice guidelines, and to predict outcomes. Advanced registries also expand their scope of participation and achieve sustainability through data commercialization.
Here’s how they reach this level. Registries arm us with trusted insights on clinician and device performance and quality improvement in care delivery. They also inform the patient experience through patient-reported outcomes. Registry owners and stewards share this knowledge and insights with the broader community to extend its impact.
Clinical Research and Practice Guidelines
Our customers have published a rich portfolio of registry-based research. Importantly, we help them achieve rapid-cycle research. On average, our customers publish their first peer-reviewed publication using registry data within a year of launch.
This is not just within scientific and medical journals, but also with the creation and publication of new clinical practice guidelines. The rigorous scientific process that we apply to registry data makes it ideal for evaluating the standards of care and long-term outcomes that impact patients.
Predictive Analytics and Outcomes Calculators
Predictive analytics is when data science principles are applied to model and forecast outcomes and risks at the point of care. This allows clinicals to make treatment decisions with better insight and, ultimately, avoid complications and negative outcomes.
The most advanced registries we support utilize outcomes calculators. These are built on complex data and models that combine foundational data assets with longitudinal patient data. Outcomes calculators provide powerful tools for shared decision-making between providers and patients and provide long-term registry value.
Predictive Analytics Registry Example
One example of an advanced registry using predictive calculators is the Michigan Bariatric Surgery Collaborative (MBSC). MBSC aims to advance the science and practice of bariatric surgery. Registry data is used to feed the MBSC Predictive Outcomes Calculator, which is publicly available for clinicians to use to predict a patient’s weight loss, comorbidity resolution, and complication rate after bariatric surgery.
Specifically, the tool:
- Predicts weight loss at years 1, 2, and 3 for five different procedures using patient information on demographics, comorbidities, and risk factors.
- Predicts the likelihood of resolving weight-related comorbidities.
- Predicts the likelihood of minor and major complications.
Notably, the predicted rates for weight loss, comorbidity resolution and potential complications are patient-specific, using risk-adjusted, real-world outcome data from similar patients.
These tools and other quality improvement initiatives helped MBSC and its members decrease rates of VTE by 43% and decrease post-surgical death rates by 67%.
Achieve Lasting Value with Your Registry
It’s important to remember that registry momentum happens over varying spans of time.
Some registries have been around for many years, and their momentum has been focused on providing foundational value to its members. Other registries are only getting started and are already looking at how they can propel their programs by quickly predicting outcomes and publishing results.
Whatever stage in which your registry exists, we have both the vision and the delivery model to help you build momentum and achieve lasting value.
If you have any questions or would like to learn more about our clinical data registry solutions, contact me, Chrystal Price, M.S. at cprice@arbormetrix.com.