5 Lessons from the 2021 CMS Quality Conference: Taking Action Amid Disruption

5 Lessons from the 2021 CMS Quality Conference: Taking Action Amid Disruption

5 Lessons from the 2021 CMS Quality Conference: Taking Action Amid DisruptionThis year’s virtual CMS Quality Conference reflected the state of the nation, set against the backdrop of the triple epidemic of COVID-19, opioid use, and health disparities.

The Centers for Medicare and Medicaid Services (CMS) envisions a technologically advanced, safe, and equitable healthcare system for all while concentrating on patient empowerment and innovative use of data to drive results. The focus is on propelling the healthcare system into becoming a “health-creating” system. This involves revolutionizing the timeliness of performance data, reduction of health inequities, and a focus on meaningful, forward-thinking measurement.

While the conference explored a wide variety of topics, including the impact of COVID-19 on all areas of health, it focused on how we can produce more equitable outcomes in fighting expensive and debilitating health problems such as opioid misuse and end-stage renal disease. Quality, especially related to Medicaid and Children’s Health Insurance Program (CHIP) recipients, was also of significant value to registries revolved around changes to the Quality Payment Program and IT Infrastructure.

Here are our 5 key takeaways from the conference.

1. The Pandemic Has Forced Data Into Action

The Coronavirus pandemic has simultaneously magnified the issues of healthcare and has accelerated finding solutions.

Health inequities have become more pronounced as communities of color suffered disproportionate death and morbidity as a result of COVID-19. Opioid use in all communities has increased as a result of economic stressors, social isolation, and the lack of a robust mental health care infrastructure.

CMS has doubled down on its efforts to prioritize patient safety and quality outcomes, protect vulnerable populations, address inequity, and create a resilient healthcare system. Clinical registries and data science play an important role in addressing each of these.

The pandemic has forced data into action, establishing reporting mechanisms in arenas that had been previously neglected, including nursing homes, dialysis facilities, and labs. This of-the-moment reporting helped to create timely interventions that lowered the incidence of COVID-19 infection even before vaccines.

The pandemic has taught us that harnessing real-time data is not only possible, but essential in directly improving patient outcomes.

2. The Future of Healthcare Relies on Data and Technology

Digital health is the cornerstone to revolutionizing healthcare and creating an implementation-focused health-creating system. As the volume of data available to both patients and providers increases, we should be utilizing this data to zero in on preventative measures, as well as improving the value and efficacy of care.

The use of data and information, through registries or other healthcare analytics programs, are key to enabling essential aspects of a healthy, robust healthcare infrastructure to allow for payment and management of accountable, value-based care and development of learning health organizations.

Standardization must drive the conversion to a digital health infrastructure. CMS has outlined a roadmap for utilizing Fast Healthcare Interoperability Resources (FHIR(R)) API technology to transform all quality measures to a digital format by 2025. Data-driven frameworks allow healthcare technology to be both individual and scalable, and can leverage centralized tools to analyze measures and programs.

This forward-looking stance also sets the stage for technologies like machine learning and neural networks. These are essential for long-term solutions to reduce burden and deliver more personalized medicine.

3. The Measures We Use Should Be Purposeful And Meaningful

The CMS Meaningful Measures framework established a system for developing strategic focus areas for measurement that assessed gaps in care and align measures accordingly.

After four years of implementation and a renewed commitment to value-based care, CMS is upgrading to Meaningful Measures 2.0. This is a framework to emphasize utilizing purposeful measures at the right time to drive improvement, reduce burden to clinicians, and be useful to patients in making decisions about their care.

CMS intends to prioritize and utilize measures for high priority targeted areas, such as socioeconomic status, maternal mortality, kidney care and home and community-based services.

Instead of collecting data in a siloed fashion, there is an emphasis on holistically collecting data to focus on the outcome of developing healthful systems. CMS has pledged to examine its value-based programs with a focus on modernization and alignment and to simplify quality programs.

Over the next year, CMS is introducing Alternative Payment Model Pathways (APPs) as an extension of alternative payment models and MIPS Value Pathways (MVPs) to the Quality Payment Program, with the goal of introducing 8-10 new MVPs in this year’s proposed rule. The MIPS Value Pathways will serve to reduce clinician burden and tightly align quality, cost, improvement activities, and interoperability.

4. The Role and Voice of The Patient Comes First

Patients have become more savvy health consumers. They are not only consuming more health-related information, but they are also becoming instrumental at co-producing their care.

Historically, patients have not had the transparency into their own health data needed to make educated decisions about their care. To address this, CMS is committed to amplifying the patient’s voice in healthcare by increasing patient-centered measures and Patient Reported Outcome Measures (PROMs) by 50%. In creating a more transparent healthcare system, CMS has pledged to expand the availability of public use files for CMS data by 2021.

Patient-centered, culturally relevant care was also a major topic of discussion in conjunction with equity initiatives. Notably, many healthcare systems and clinical registries are already including the patient perspective and measuring health disparities with patient-reported outcomes (PROs).

While much emphasis has been placed on putting patients first, we cannot ignore the role of provider safety in creating an environment for patient care. Safety, whether it is in the form of personal protective equipment for clinicians or creating a psychologically safe atmosphere for providers to ask questions and make mistakes, must also be at the forefront of our healthcare system for the protection of patients.

5. The New Normal Is Health Equity

Socioeconomic conditions and health are inextricably linked. CMS is redoubling efforts to expand the health system to incorporate social science and implement stratifying measures to address health equity. Addressing barriers to care through standardization of social determinants of health (SDOH) and demographic data is paramount to addressing inequities.

Measurement tools such as the Health Equity Summary Score (HESS) apply the fundamentals of measurement to addressing social risk factors. HESS takes two very readily available elements of race/ethnicity and Medicare/Medicaid dual eligibility status to determine health disparities and develop quality improvement interventions to alleviate them.

Data collection on health-related social needs and integration with community services is essential in addressing gaps related to healthcare. These clinical and community linkages stand to improve the quality of life for patients and lower costs.

If you want to learn more about the ethical obligation of healthcare stakeholders to address health inequity, read my post “Steps to Address Health Inequity: Awareness, Measurement, and Action.”

Resilient Healthcare for the 21st Century

In summary, CMS recognizes that healthcare must be recognized more holistically as healthfulness.

This is a multifaceted concept and emphasizes the importance of authenticity and wrap-around services in meeting patient needs. Creating a resilient healthcare system for the 21st Century is an integrative process and must incorporate cultural sensitivity, technology, psychological safety for clinicians, and patient-generated data for optimal results.

All healthcare organizations – especially those involved in care delivery and treatment – play a role in realizing this vision.

  • Professional medical societies and quality collaboratives can design and develop registries that leverage standards-based interoperability and address emerging research priorities and questions.
  • Provider organizations can heighten the role and voice of the patient with patient-reported outcomes and shared decision making, and understand and address health disparities across their populations.
  • Healthcare analytics organizations, like us, can embrace and drive adoption of standards and technologies that make performance measurement more efficient and accessible.

If you are ready take your quality improvement work into the future, or want to better understand how CMS’s priorities affect your program, let’s connect. You can email me at cprice@arbormetrix.com.

The Basics of Clinical Data Registries

The Basics of Clinical Data Registries

The Basics of Clinical Data Registries

Healthcare’s digital transformation is long underway, yet still lagging. Calls for better and more efficient care, therapies, and outcomes have never been louder and more insistent. The role of clinical data registries has never been more significant.

It’s necessary to understand the importance of registries and how they make sense out of large volumes of disparate healthcare data to measurably improve care and advance research.

Let’s cover the basics:

  • What Is a Clinical Data Registry?
  • Types of Clinical Registries
  • Purpose and Uses of Clinical Data Registries
  • The Value of Clinical Data Registries
  • Examples of Quality Improvement with Clinical Data Registries
  • Example of a Medical Device Registry
  • Getting Started with Clinical Data Registry Software Solutions

What Is a Clinical Data Registry?

A clinical data registry is an interactive database that collects, organizes, and displays healthcare information.

Clinical data registries are also sometimes called patient registries and disease registries. Professional medical associations and 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 sound condition-specific, that term is often more popular with industry.

Regardless of the name, the purpose of a data registry is the same: to evaluate and improve outcomes for a population defined by a particular condition, disease, or exposure.

Specifically, registries use observational study methods to collect and harmonize data about the treatment, outcomes, and well-being of patients who receive care over time. They aggregate large data sets and analyze trends or patterns in treatments and outcomes.‍

Registries can serve many purposes and provide value for a variety of healthcare stakeholders. For example:

  • Physicians and other healthcare professionals use registries to evaluate available treatments, procedures, and therapies, and to understand how patients with different characteristics respond to various treatments.
  • Medical device manufacturers and pharmaceutical developers use registries to track and understand the effectiveness, safety, and value of medical devices or therapies and drugs entering or on the market.

The number of registries has grown over the past several decades as healthcare information has become digitized. Yet despite their increase in use and significance, registries face real challenges in establishing the participation, engagement, and utility needed to drive their sustainability.

Modern clinical data registries address these limitations by going beyond data collection and data warehousing. They rely on advanced analytics and data science to transform data into meaningful insights that are useful, usable, and used by a variety of stakeholders to achieve a desired outcome.

Types of Clinical Registries

Clinical registries come in many different forms. The type of registry depends on the organization managing or sponsoring it, and the patient population, disease, condition, or treatment it examines.

Although registry goals and purposes vary, when designed with the right approach and built with the right analytics technology, they can measurably improve care.

What Is a Patient Registry?

A patient registry, also called a disease registry, tracks information about the health status of patients and the care they receive for a specific disease or condition. Patient registries bring together data to evaluate longitudinal outcomes, best practices, treatment guidelines, and to support research and therapeutic development.

A growing number of patient foundations and pharmaceutical organizations are establishing patient registries to study the treatment of rare diseases and conditions, such as hemophilia and other genetic diseases.

What Is a Specialty Registry?

Specialty registries are clinical registries focused on advancing care and outcomes across a medical specialty or subspecialty, such as pathology, sleep medicine, surgery, and trauma medicine. These registries often aim to develop guidelines and decision support tools, accelerate research, and advance care through collaborative quality improvement. Specialty registries also provide a mechanism for physicians and providers to report to the Centers for Medicare and Medicaid Services (CMS) under the Merit-based Incentive Payment System (MIPS) as Qualified Clinical Data Registries (QCDRs).

What Is a Population Registry?

A population registry is more broadly focused across entire patient populations and spans both specialty care and specific diseases and conditions. These registries aim to capture the health, well-being, diagnostic, treatment, and outcome data for every patient within a population defined by demographics (age, gender, or other social determinants), geography (state, region, country and including like Health Information Exchanges and within Health Departments), or disease or condition (diabetes, cancer).

What Is a Medical Device Registry?

A medical device registry is focused on tracking the effectiveness, safety, and value of medical devices. Device registries come in several forms. Medical specialty organizations may collect data on various devices used for procedures or conditions, as part of their clinical data registries. Medical device companies establish registries and use registry data to support post-market surveillance.

What Is a Payer Registry?

A payer registry is established by a healthcare payer focused on measuring and improving value by advancing outcomes and reducing costs. Payer-sponsored registries are often organized across a specific geography or region, and by specialty – surgery, urology, emergency medicine, etc.

Purpose and Uses of Clinical Data Registries

Healthcare organizations such as medical specialty societies, patient foundations, pharmaceutical companies, and medical device manufacturers establish registries for many purposes and uses.

Clinical Data Registry Purposes

Clinical Data Registry Uses

The Value of Clinical Data Registries

Clinical data registries are valuable when they measurably improve care and achieve results. Examples of this in action are advancing research, establishing and evaluating guidelines, or managing and reducing costs.

Achieving value with a registry happens when:

  • Physicians and providers use high-quality, data-driven insights to better understand expected outcomes, make evidence-based decisions, and share best practices.
  • Patients share timely and personal data about their condition and outcomes and gain a greater understanding of their care that leads to informed shared decision-making.
  • Researchers and developers use registry data as the foundation for registry-enhanced or registry-based research, clinical trials, or post-market surveillance studies.

Examples of Quality Improvement with Clinical Data Registries

In 2019, the Michigan Surgical Quality Collaborative (MSQC) used registry data to generate knowledge in the form of procedure‐specific opioid prescribing guidelines.

The result?

Post-surgical opioid prescribing dropped by 30%, and post-surgical patient opioid consumption dropped by 50%, according to a paper published in the New England Journal of Medicine. There also was no change in patient-reported satisfaction with care and pain in the week after surgery.

The Pediatric Cardiac Critical Care Consortium (PC4) aims to improve the quality of care for pediatric heart patients through a clinical data registry that allows hospitals to evaluate their own outcomes and learn best practices.

Their efforts are paying off.

Eighteen hospitals significantly reduced mortality and improved care for children with critical heart conditions, according to a paper published in the December 2019 edition of the Journal of the American College of Cardiology. Specifically, they achieved a 24% decrease in postoperative mortality among participating sites between 2014 and 2018.

If you want to know more, read this post about how MSQC and PC4 are top examples of quality improvement in healthcare.

Example of a Medical Device Registry

Clinical registries sponsored by medical specialty societies and patient advocacy organizations are proving to deliver tremendous value in tracking and measuring the effectiveness of medical devices and drugs. Medical device and pharmaceutical developers leverage registry data to gain insights into how their products actually perform in the real world.

For example, the Extracorporeal Life Support Organization (ELSO) aimed to transform its international medical device registry into a rich data asset for ECMO device manufacturers. Through real-time access to device usage and outcomes data, coupled with advanced analytics and reporting services, device manufacturers have the tools they need for data-driven research and development, rapid regulatory submissions, and cost-effective registry-based clinical trials.

Read more about how ELSO’s global medical device registry, helps bridge the gap between what really happens in healthcare and what is “supposed” to happen by turning real-world data into real-world evidence.

Getting Started with Clinical Data Registry Software Solutions

Today’s most successful clinical data registries use healthcare analytics technology that goes beyond data collection and data warehousing and plays a crucial role in advancing care and research.

Specifically, a clinical data registry platform should:

  1. Acquire various data using industry-leading technology and standards.
  2. Assemble the data into real-world evidence using advanced analytics and data science.
  3. Enable various users to act on the evidence using dashboards, reports, surveys, and other unique decision-support tools.

There is a lot that goes into each of these 3 essential building blocks. Read this post to learn more about designing a patient registry to improve care.

Leverage the Power of Clinical Data Registries

The National Quality Registry Network outlines some key considerations when approaching a clinical data registry and deciding what to outsource to a vendor. This includes your in-house availability and expertise, budget impact, convenience, and the many responsibilities that can be outsourced or kept in-house.

At ArborMetrix, we help healthcare organizations and companies demonstrate real and measurable results through robust analytics and intuitive reporting. Through our comprehensive partnerships and clinical expertise, we enable our clients to leverage their real-world evidence for real-world results.

3 Technology Essentials for Clinical Registries that Improve Care

3 Technology Essentials for Clinical Registries that Improve Care

3 Technology Essentials for Clinical Registries that Improve Care

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?


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?

Sample Peer Group Benchmarking Report

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.

Merit-based Incentive Payment System (MIPS) Reporting

Supporting CMS quality reporting not only drives quality improvement but also extends business value to registries. Physicians and other providers can use registries to report under the CMS MIPS program across all reporting categories, via a Qualified Clinical Data Registry (QCDR) or Qualified Registry (QR). By selecting and reporting on meaningful, clinically-relevant measures, monitoring performance rates, and reviewing estimated MIPS scores, they will understand their expected reimbursements in these programs.

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.

How Registries Gain Momentum and Achieve Lasting Value

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:

  1. Foundational
  1. Intermediate
  1. 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:

  1. Predicts weight loss at years 1, 2, and 3 for five different procedures using patient information on demographics, comorbidities, and risk factors.
  2. Predicts the likelihood of resolving weight-related comorbidities.
  3. 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.

QCDR Value in 2021 and Key Updates to the MIPS Program

QCDR Value in 2021 and Key Updates to the MIPS Program

QCDR Value in 2021 and Key Updates to the MIPS Program

Many medical organizations and an overwhelming majority of eligible physicians choose to participate in the Centers for Medicare & Medicaid Services (CMS) Merit-based Incentive Payment System (MIPS).

Through MIPS, clinicians and other medical organizations have the opportunity to earn higher payments for high-quality care. For many, reporting performance data to CMS for the MIPS program means participating in a clinical registry.

A clinical registry that supports MIPS reporting, whether through a qualified registry (QR) or a qualified clinical data registry (QCDR), is one piece of a comprehensive solution that facilitates quality improvement. Additionally, because so many clinicians participate in MIPS, QCDRs and QRs are valuable tools that medical specialty societies can offer to their members. Clinicians who participate in QCDRs drive their own success with quality reporting, and they also optimize their reimbursement, understand how to improve, and take control of their performance.

QCDRs continue to provide a major mechanism for quality reporting, with 57 registries approved for 2021.  [1] Notable national QCDRs include the American Society of Clinical Pathologists’ National Pathology Quality Registry and the American College of Mohs Surgery MohsAIQ registry.

The MIPS program has had its ups and downs since its inception, but the program is here to stay, and the stakeholders involved have learned how to improve the effectiveness and efficiency of the program. Read on for a quick refresher on QPP, MIPS, and QCDRs, and an overview of the MVP program. We will provide a breakdown of the MIPS performance categories and how your technology can best support each one. Finally, we’ll end with the key takeaways from the 2021 MIPS Final Rule — including a change in performance category weights to emphasize cost — and what it all means for your organization and your registry.

In this post we will cover:

  • MIPS and QCDRs: A Refresher
  • MIPS Performance Categories
  • Key Highlights of the 2021 MIPS Program and Final Rule, including APPs and MVPs

MIPS and QCDRs: A Refresher

Value-based payment programs take many forms, from episode-specific Medicare payment bundles (such as for knee replacements) to accountable care organizations. All of these programs have the same goal: increase care quality while reducing costs. One extremely popular value-based payment program is MIPS; in fact, in 2019, 97% of eligible providers participated in the program. [2]

So what exactly is MIPS, and how can a healthcare provider or organization participate? Let’s start by reminding ourselves of the basics.

The world of value-based payment (and healthcare in general) is full of acronyms. Download our printable MIPS Acronym Reference Card — you’ll never be stuck Googling letters again.

What Are MACRA and QPP?

The Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) was passed by Congress to help modernize the healthcare reimbursement system while also financially incentivizing quality improvement. To that effect, MACRA established the Quality Payment Program (QPP), which rewards high-performing Medicare caregivers with higher payments while also decreasing payments to low-performing clinicians. [3] The goal of QPP is to improve the quality of patient care while also reducing costs.

Through QPP, clinicians can access quality-based reimbursement via the Merit-based Incentive Payment System (MIPS) or through Advanced Alternative Payment Models (AAPM). Clinicians choose one of the two tracks based on factors such as the size of their organization or the makeup of their patient populations.

What Are MIPS and MVP?

The Merit-based Incentive Payment System (MIPS), also established by MACRA, launched in 2017, and it financially incentivizes improving care quality. It is one of two tracks clinicians can use to receive quality-incentivized Medicare reimbursement under QPP.

Clinicians participating in MIPS receive performance-adjusted payments for Medicare Part B services. Payments are adjusted based on how clinicians measure up in four performance categories—discussed in greater detail below—which are each weighted differently. The resulting final MIPS score, which is measured on a scale from 0 to 100, ultimately determines whether a clinician’s payment adjustment is positive, neutral, or negative. [4]

Beginning in Performance Period 2022, the MIPS Value Pathways (MVP) program will promote further integration of the MIPS categories by streamlining clinician participation through a hybrid approach. MVP will measure clinicians on a unified set of measures and activities around a clinician condition or specialty and are intended to be a pathway to advanced alternative payment models. Read “MIPS Value Pathways: What You Need to Know” to learn more about the changes coming to the MVP program and how you can prepare your registry and clinicians for what’s ahead.

What Is a QCDR?

A Qualified Clinical Data Registry (QCDR) is an entity approved by CMS that aims to improve care quality. Many healthcare organizations, including health systems, medical specialty societies, and quality collaboratives, run QCDRs.

These specialized registries collect data from clinicians and report this data to CMS on their behalf for MIPS. QCDRs offer eligible clinicians a single way of participating in all aspects of MIPS.

A QCDR can therefore serve as a MIPS reporting solution while also supporting individual clinician and specialty-wide performance improvement.

Specifically, a QCDR can:

  • Facilitate quality improvement, patient safety initiatives, and research.
  • Report on the right measures to optimize future CMS reimbursement.
  • Allow clinicians to spend time delivering care instead of documenting it.
  • Help clinicians know where they stand and what to do to improve.

While clinical data registries provide the framework for quality improvement in many healthcare settings, QCDRs are uniquely positioned to drive robust engagement by specialist physicians.

By offering relevant, specialty-specific quality measures, QCDRs can be used to satisfy MIPS reporting requirements. The most effective quality measures in this context are those that seamlessly integrate into clinician workflow, have low barriers for data collection, fairly attribute outcomes to the proper clinician, and measure performance gaps in a manner that allows for feedback and subsequent improvement.

What Is a QR?

A qualified registry (QR) also collects data from clinicians, which it then reports to CMS. The main difference between QRs and QCDRs is that QCDRs can collect and report specialty-specific measures that are not part of the MIPS measure set. Because QRs and QCDRs are so similar, they offer many of the same benefits, with the caveat that QCDRs are often more useful for specialist physicians.

MIPS Performance Categories

Physician organizations and health systems use QCDRs for MIPS reporting to efficiently collect and organize the clinical data they need to demonstrate improvements in quality of care and easily report their MIPS performance measures. Many medical specialty societies and associations have also established QCDRs to demonstrate improvement in care quality.

There are four reporting categories for MIPS:

  • Quality: Clinicians are measured based on the quality of the care they provide.
  • Promoting Interoperability: Healthcare organizations are measured based on how they facilitate and deploy electronic health records (EHRs). By using EHRs, clinicians and health organizations can more fully engage patients in their own care by making their health information more readily accessible.
  • Improvement Activities: Healthcare organizations are assessed on how they go about making improvements to their care processes.
  • Cost: Healthcare organizations are assessed on their cost of care.

Medical organizations that make the right performance measures available through their QCDR can drive increased registry performance and value. Performance measures can be created in a way that minimizes workflow disruption and eliminates the perceived burden of registry participation, or refined to meet high-priority, specialty-specific needs.

QCDRs have accomplished this with quality MIPS reporting solutions that:

  • Report on the right measures. Providers who optimize QCDR performance measures can uncover valuable insights and demonstrate improvements in the quality of care. This simplifies MIPS reporting and optimizes future CMS reimbursement.
  • Reduce the amount of time spent dealing with data. Busy physicians have little time to spend on data collection. A quality reporting solution simplifies the documentation process and frees up more time to deliver care.
  • Provide clear outputs. A strong QCDR will include a layer of data analysis that provides clear outputs for providers so they know where they stand and how they can improve in the future.

There are many valuable uses for registries beyond acting as QCDRs for MIPS reporting, but for registries that have solid quality improvement and research objectives, engaging a QCDR is an effective strategy to add even more practical day-to-day value to your registry.

Key Highlights of the 2021 MIPS Program and Final Rule

The MIPS program changes slightly every year and will shift how healthcare providers and systems leverage their QCDRs. Forward-thinking groups should be aware of annual changes and be prepared to adjust their data collection and reporting accordingly. For clinicians reporting traditional MIPS in 2021 (for payment in 2023), the new MIPS rules stipulate that while the performance threshold of 60 points will not change, the weights of the performance categories will shift slightly to reflect the rising importance of cost.

A solid QCDR will allow health providers, systems, and medical associations to adapt to changing requirements and continue to optimize reimbursement incentives.

CMS has announced new, focused efforts to improve its QCDR and QR partnerships in an effort to reduce reporting burden for clinicians. In light of the COVID-19 pandemic, CMS has limited the number of changes to the Quality Payment Program in the 2021 Final Rule.

In addition to adjusting the performance threshold and category weights for traditional MIPS, the 2021 QPP Final Rule fleshes out the framework for MVPs and introduces Alternative Payment Model Performance Pathways (APPs), which create more specific implications for QCDRs and QRs by aligning all MIPS performance categories into cohesive reporting mechanisms.

MVPs will function with population health and promoting interoperability measures as its basis. These measures are applicable to all value pathways within the program. MVPs will incorporate patient input, digital measure reporting, and subgroup reporting to create a simplified and holistic reporting system for both registries and clinicians.

APM Performance Pathways, intended for participants in MIPS APMs, are complementary to MVPs and will allow clinicians and groups to report on six quality measures centered on population health. APPs will incorporate measures in each performance category while factoring in cost at the individual APM level. QCDRs and QRs are integral in this program since three of the reported measures will be electronic clinical quality measures (eCQMs), MIPS clinical quality measures, or Medicare Part B claims measures.

These policies are still being finalized, but the Final Rule will allow QCDRs, QRs, and health IT vendors to support APPs this year and MVPs starting with the 2022 performance period. The Final Rule also introduces new validation requirements for QCDR and QR data and reporting measures.

Explore the ArborMetrix Complete Solution for CMS-Approved QCDRs

ArborMetrix has a long track record of providing comprehensive support for MIPS reporting with all of the requirements for CMS-approved QCDRs and QRs. We have successfully helped more than 30,000 providers report to CMS via QCDRs, supported several organizations through the annual QCDR self-nomination process, and maintained thousands of measures for our clients.

If you have questions about MIPS reporting or would like to learn more about our QCDR solution, you can contact me at cprice@arbormetrix.com.



  1. https://qpp-cm-prod-content.s3.amazonaws.com/uploads/1230/2021%20QCDR%20Qualified%20Posting.xlsx
  2. https://www.aha.org/news/headline/2020-10-28-cms-releases-quality-payment-program-results-2019
  3. https://qpp.cms.gov/about/qpp-overview
  4. https://qpp.cms.gov/mips/reporting-options-overview

The Top 3 Lessons for Registries from the CMSS Annual Meeting

The Top 3 Lessons for Registries from the CMSS Annual Meeting

The Top 3 Lessons for Registries from the CMSS Annual Meeting

The Council of Medical Specialty Societies (CMSS) held their 2020 Virtual Annual Meeting with the theme of Covid-19 and Beyond: Digital Transformation of Healthcare, Research, and Education.

The dynamic group of presenters and panelists covered a variety of topics that demonstrate how digital technology, such as clinical registries and healthcare analytics, can be instrumental in advancing healthcare.

Our key takeaway: The digital transformations that are needed to make these advancements are less about how people transform technology and more about how technology transforms people and lives.

Registries, for instance, can be used to help solve some of the most intractable issues in healthcare like:

  1. Addressing underlying root causes of health disparities.
  2. Making it easier for patients to understand, navigate, and manage their care.
  3. Monitoring and managing COVID-19 and other emerging priorities.

1. Addressing Root Causes of Health Disparities

There are widespread and longstanding health disparities among racial and ethnic minorities.

These disparities cause some populations to face unfair health burdens. Health is a fundamental human right, and consequently, healthcare stakeholders have an ethical obligation to ensure fair and just health experiences by acting to eliminate avoidable health disparities.

Clinical data registries are powerful tools for assessing health disparities, identifying the root causes, and tracking efforts to address health inequities. Importantly, these tools should provide actionable insight, as referenced by Rhea Boyd, M.D., M.P.H., Pediatrician and Child Health Advocate at Palo Alto Medical Foundation and UCSF Benioff Children’s Hospital.

This work includes implementing robust data logic rules to identify underperformance in need of equity-focused quality improvement efforts, as presented by Ernest Moy, M.D., M.P.H., Executive Director, Office of Health Equity, U.S. Department of Veterans Affairs. Those health equity efforts are made more effective with social determinants of health analytics that provide a comprehensive view of the interconnected factors influencing a patient’s health.

How Registries Can Advance Health Equity

Alongside several of our partners at medical specialty societies, we see the very real effects of longstanding and systemic health disparities – made evident through evaluating data in their registries.

Registries collect a high-volume of data from different sources and deliver high-quality, data-driven insights. Efforts to reduce health disparities require data to detect and measure the impact of disparities, identify the complex and interconnected determinants, and inform interventions and best practices.

Efforts to advance health equity through registries fall into three activities:

  • Measuring health disparities. To reduce health inequities, we need methods to measure disparate health outcomes and methods to assess the impact of those disparities across different types of health indicators.
  • Assessing underlying factors. Effectively addressing health disparities requires understanding the underlying factors influencing disparate outcomes.
  • Forming and evaluating interventions. By assessing health disparities and their underlying factors, we will have insights to develop impactful interventions and sustaining widespread health equity improvements through tracking best practices.

2. Helping Patients Understand Their Care and Outcomes

Healthcare is complex. Patients can be overwhelmed as they try to understand, navigate, and make important decisions about their care.

Consider a patient with a chronic condition who might have up to 20 healthcare providers, all generating assessments and treatment plans that must be coordinated and aligned. Even people who have spent their life working in healthcare can feel overburdened by the amount and complexity of information presented to patients.

More patients are now turning to technology to help them through their care journey. And now more technology is becoming patient-centric to help patients overcome common barriers they face in their healthcare.

For example, registries can offer patient engagement tools that provide patients with meaningful support as they interact with their health. Registry patient portals should offer key types of support to improve patient experiences and health outcomes:

  • Instrumental Support. Tangible services and functions, such as capabilities to directly connect to their care team or participate in clinical trials or research.
  • Informational Support. Connection to tailored patient resources that provide advice, suggestions, and clinical insights.
  • Appraisal. Personalized registry data can be presented back to patients in easy-to-review graphs. This can show patients how they are progressing throughout their treatment, which helps patients to self-evaluate their progress and health experiences.

As described by Donna Cryer, JD, President and CEO of the Global Liver Institute, these patient-centric technologies give patients supportive communities and influential tools to elevate a patient’s voice and help them maximize their health.

3. Understanding a Global Pandemic

Monitoring, managing, and understanding COVID-19 was top-of-mind throughout several sessions. Registries are playing a central role in this.

Modern registries can address emerging health issues like the pandemic with rapid measurement and quick discoveries.

There are three key parts to doing this successfully:

  • Determining the priorities and research questions a registry can uniquely answer.
  • Using trusted data and advanced analytics to address critical issues.
  • Leveraging a flexible data infrastructure to pivot at any time – modern clinical data registries are designed to evolve.

Several organizations are already leveraging their registries and data infrastructure to be proactive in measuring, monitoring, and addressing the COVID-19 pandemic. You can learn from them and find more strategies in our blog post “Best Practices for Clinical Registries with New Research Priorities.

Registry Technology Should be People-Centric

Overall, digital transformations are about using technology to solve issues for people, not simply about using people to solve technology issues.

It is less about being technology-centric than it is about making technology people-centric. Registries are powerful tools that can be designed to address some of the most widespread health issues affecting people, while also engaging patients in innovative ways to improve their health experiences.

From defining the vision for a registry program to designing surveys and reports for clinicians and patients, we take a person-driven approach.

4 Ways Clinical Registries Deliver Value to Life Science Companies

4 Ways Clinical Registries Deliver Value to Life Science Companies

4 Ways Clinical Registries Deliver Value to Life Science CompaniesMedical specialty societies were founded on two key principles: knowledge sharing and the exchange of clinical insights to improve medical practice. That central task has evolved as societies use clinical data registries to serve diverse and important stakeholders who are also involved in ensuring optimal health outcomes.

These clinical data registry stakeholders include:

Societies and their registries are vehicles to further data-driven care through collaboration with these health care stakeholders. New opportunities frequently arise for registries to add unique value through the data insights they provide — especially through partnerships with life science organizations.

Specifically, there are four common ways for registries to empower life science organizations with new understandings in patient outcomes. These opportunities further support real-time insights in clinical care.

  1. Patient Cohort Analytics
  2. Post-Market Surveillance
  3. Clinical Decision Support
  4. Registry-Based Clinical Trials

Let’s examine each to understand their value to industry and value to your mission.

1. Patient Cohort Analytics and Registries

Patient cohort analytics are useful in several ways. They provide analytic tools to facilitate activities like clinical trial enrollment and registry cohort comparison for research.

Registries transform raw data into tools that provide tremendous value to trial sponsors in two ways:

  1. Identification of individual patients who match a specific cohort of interest and meet clinical trial inclusion and exclusion criteria. This allows trial sponsors to expand their trial network beyond standard academic centers and into community care settings, and through rapid enrollment of trial participants.
  2. Creation of comparison cohorts of registry patients through propensity-score matching. This allows trial sponsors to allow for fair and accurate comparison between treatment cohorts within a trial external to the registry and non-treatment patients found within the registry.

2. Post-Market Surveillance and Registries

Patient registries are uniquely useful in their ability to facilitate post-market surveillance for three reasons:

  1. They advance post-market surveillance activities to help us better understand the real-world safety and effectiveness of procedures, treatments, and devices.
  2. They solve complex problems for device and pharma companies. These organizations in general are faced with complex barriers when seeking real-world data for purposes of research and development, quality improvement, or regulatory requirements.
  3. They deliver the comprehensive technology needed to build a registry that collects real-world data, transform it into real-world evidence, and make it accessible and useful.

Simply stated, registries provide real-time answers to common post-market surveillance questions, like:

  • How is a device or drug actually used in real-world settings?
  • What does the average patient look like?
  • How does a product truly perform?

3. Clinical Decision Support and Registries

Clinical decision support tools convert retrospective registry data into powerful point-of-care tools with immediate impact on patient care.

Decision support tools are built to take the guess work out of trade-off decisions between treatment courses. With real-world data and a user-friendly interface, decision support apps are valuable resources. They enable clinicians and patients to prioritize outcomes and establish appropriate expectations.

At the same time, decision support tools can be designed to demonstrate the degree to which device or pharmaceutical factors drive outcomes. These tools create significant value for industry stakeholders and set the stage for value-based reimbursement.

4. Clinical Trials and Registries

Registry-based clinical trials (RBCTs) set the gold standard for creating value for multiple stakeholders.

RBCTs rely on the registry’s network of participating clinicians, their patients, and the foundational registry dataset. They identify participating investigators and clinicians, facilitate patient enrollment, and support the majority of data elements required for trial completion. Registries also capture specialized clinical trial data through custom patient surveys, electronic case report forms, and data mapping.

The process ultimately leads to a clinical trial completion that is much quicker and more cost-effective than traditional methods.

Registry Data Partnership Readiness

There are a few key steps to determining your organization’s readiness for registry data partnerships with industry.

  1. Understand the market opportunity. To design an effective program, conduct market research to understand who would find value in your registry data, what products or therapies they have on the market, and how those products are valued.
  2. Assess your registry data. You’ll need to know what data in your registry would be valuable to medical device manufacturers or pharmaceutical companies. Assess those clinical situations where real-world registry data tracks either clinical practice or patient populations that can’t be easily studied via traditional trials.
  3. Validate your registry data quality. Data quality is important for any registry work. Before initiating registry-based clinical trials or making de-identified registry data available to industry, you want to ensure the data quality is regulatory-grade. Achieving this requires a thorough data quality analysis to assess data integrity across dimensions such as completeness, concordance, precision, and currency.

Developing Registries for Many Stakeholders

Registries are powerful tools for effectively generating new clinical insights for key stakeholders and creating meaningful partnerships with life science companies.

These stakeholder collaborations use registries to employ valuable data tools to evaluate and improve patient outcomes, and in the process, help to further support the operations of registries and their underlying missions.

ArborMetrix offers an industry-leading, proven registry solution that meets the needs of medical device and pharma companies, medical specialty societies, and clinicians.

Clinical Registries Are the Next Step for National Healthcare Improvement Initiatives

Clinical Registries Are the Next Step for National Healthcare Improvement Initiatives

Clinical Registries Are the Next Step for National Healthcare Improvement InitiativesIn the alphabet soup of healthcare, often the initial drivers of large-scale initiatives are government reporting and regulatory requirements, like All Payer Claims Databases (APCD) and Health Information Exchanges (HIE). These requirements encourage interoperability and data sharing between stakeholders.

These efforts aren’t new or news – but the past decade has focused on identifying assets, bringing the data in, and analytics that match patients across sources.

Government agencies at all levels (both in the U.S. and abroad) are moving into the next phase of this journey. They are going beyond data access and blending and focusing on using the data strategically to improve care and lower costs.

Registries Power Population Health Programs

When faced with a large population data set, it can be a challenge to target a single focus area that has both meaning and impact. Clinical data registries are a perfect example of macro-level data used for micro-level initiatives. When these targeted initiatives achieve measurable results, this leads to tremendous power for population health initiatives.

We’ve seen the role registries play in quality improvement successes at specialty-focused organizations. They’ve driven important and renowned innovations in care delivery. This has been accomplished through the symbiotic relationship between a culture of engaged physicians and the use of trusted data and powerful technology. The technology allows for a window into physician performance and patient outcomes.

When planning how to make a patient registry part of your population health program, there are two parts to consider:

  1. Registry Technology
  2. Registry Strategy

Part 1: Technology of Building a Clinical Data Registry for Population Health

A clinical data registry is built on the ingestion of real-world data and the transformation of that data through advanced analytics into actionable real-world evidence. Let’s break this process down into 3 key steps.

  1. Data Acquisition: Acquisition can include a broad spectrum of options. One option is machine-to-machine connections to EHRs, government assets, and other databases. There are also human-to-machine connections as needed for data entry from providers and patients. This includes more granular disease-specific elements and longitudinal outcomes outside of routine care visits.
  2. Data Assembly: Assembly can include validation and cleansing for quality, and transformation for analytic purposes. This includes creation of clinically specific measures, risk adjustment for fair case mix comparisons, patient matching, benchmark creation, predictive models, and more. This transformation is key to building trust in the data.
  3. Acting on Evidence: Leveraging evidence is facilitated by our intuitive and user-friendly tool, RegistryX. RegistryX provides visibility into all individual data elements attributed to patients, as well as aggregate reporting that provides deep insights into trends, patterns, and opportunities for change.

In large initiatives, so much time is spent on acquiring data that transforming it and utilizing it effectively are afterthoughts. While data is foundational and fundamental, a strong strategy behind the technology ensures a speed to value and long-term registry success.

Part 2: Strategy of Building a Clinical Data Registry for Population Health

A registry toolset needs to go beyond technology and data access and produce information of such quality that it can be relied upon to improve the standard of care across entire health systems, states, or countries.

At its strategic core, a registry is a very simple concept broken into 3 parts.

Curated Data Elements

The curated data elements are considered and selected from the broad set of data assets available and used to create a defined Data Dictionary. While in some cases, gathering as many data elements as available has value (often the foundation of initiatives like HIEs and APCDs), most successful quality improvement initiatives only utilize a subset of these elements. Strategically curating these assets ensures the most relevant and meaningful elements are being collected, validated, and transformed for purpose-driven use in the context of specific diseases or conditions.

Measurement Strategy

The measurement strategy transforms data into information through the rigorous application of data science principles. These principles create trusted data assets that can quantify outcomes and identify the drivers of those outcomes. This trusted data gives, agencies, hospitals, or physicians the resources they need to better understand and improve care. This is the strategic heart of a registry – data that is trusted to enact important care delivery changes.

Targeted Focus

A targeted focus is the identification of high-priority questions your agency or organization needs to answer about the providers, patients, and processes under your influence. Starting with a focus ensures that you are pointed at achievable opportunities for change.

Think: reduce surgical site infection rates, not reduce mortality. This focus ensures that you are targeting true opportunity for improvement that will be measurable and repeatable across the system of care.

Operationalize Large Scale Quality Improvement

When you apply this strategic framework on top of strong registry technology, you can operationalize and catalyze large scale improvements in care delivery – across organizations, agencies, and around the world. To learn more about how to evaluate your registry technology, check out my post: 4 Technology Essentials for Patient Registries that Improve Care.


If you have any questions or would like to learn more about our clinical registry solutions, contact me at sheaton@arbormetrix.com.

Best Practices for Clinical Registries with New Research Priorities

Best Practices for Clinical Registries with New Research Priorities

Best Practices for Clinical Registries with New Research Priorities

You set goals, outlined plans, and hit milestones. Then 2020 changed - in a big way. Questions came. Priorities shifted. Opportunities emerged.

Despite uncertainty, there are a few things to be sure about:

  • Registries are essential to our understanding of the direct and indirect effects of the pandemic.
  • Registries must adapt to address emerging research priorities and questions.
  • Registries can pivot successfully with the right strategy, technology, and partners.

Successful patient registries are designed to pivot. Flexibility is inherent and technology scales as needs evolve. Consider how the following organizations changed course to address pressing issues and emerging research questions.

  • The current healthcare landscape: The American Academy of Physical Medicine and Rehabilitation (AAPM&R) is adapting its registry to answer important research questions and track long-term patient outcomes.
  • The COVID-19 pandemic: The Acute Care Quality Registry quickly adapted its technology to monitor and manage the effects of the pandemic on patients, hospitalists, and health systems.
  • The national opioid epidemic: The Michigan Surgical Quality Collaborative leveraged its registry to establish evidence-based guidelines, track adherence to those guidelines, and ultimately reduce post-op opioid prescribing by 30% and consumption by 50%.

We shared these examples during a recent webinar, “How to Pivot Your Registry and Meet New Priorities.” You can view it on-demand here and read on to learn the steps you can take to ensure your registry is ready to pivot and meet new priorities whenever they arise.

Step 1: Determine the Priorities and Research Questions Your Registry Can Uniquely Answer

Often with a registry, it's tempting to start with the data you can easily collect and then make sense of it all. But this quickly leads to overwhelming data volume with a lack of specificity.

Instead, flip the script and begin with the end in mind. Use this framework and ask yourself the following:

  • What are your goals and objectives? How have they changed? Which ones are inherently important – no matter what changes have happened?

Clinical guidelines, patient engagement, physician engagement, and research are all timeless goals. But they may require specificity and some shifts. Identifying what’s truth and accommodating necessary changes ensures that your registry will still point in your organization’s North Star, with a shared set of priorities. Documenting this will help to assess opportunities and minimize distractions, even when those distractions seem monumental.

  • What output will help you reach these priorities and goals? In other words, your goals should define what’s visible in your registry. What do your clinical, scientific, and patient communities need to achieve these aims. The reports, dashboards, workflows, and predictive calculators and tools in your registry should deliver the insights your stakeholders need to take action.
  • Your registry’s outputs drive how the data should be combined and adjusted. This includes your measures and cohorts, peer groups, benchmarks, and more. How will you measure what matters? What elements and assets need to be combined in order to support those measures?
  • Finally come the data. What individual data elements do you need? How will you collect that data securely, efficiently, and accurately?

This process isn't something to do only once or only during implementation. It is something to document and revisit every time there is a shift in your specialty or practice. Doing this will help ensure that the changes and adjustments to your strategy and registry continually serve both your people and your priorities.

Step 2: Use Trusted Data and Advanced Analytics to Address Critical Issues

Addressing new and emerging health issues requires rapid measurement and quick discoveries.

It involves having the right framework that involves two things:

  1. A comprehensive data collection strategy that ensures you have all the right data.
  2. Advanced registry analytics that help you answer all the right questions.

Registry Data Collection Strategy

Different data sources supply different information to ultimately evaluate a health issue. Most registries rely on clinical data from the EHR. But most data sources – EHR data especially – has inherent limitations. Clinical data alone often doesn’t provide all of the information needed to fully understand a health issue.

This means registries that rely on EHR or clinical data alone will have data gaps. Yet solving some of the most intractable issues in healthcare will require innovative methods of blending data to deliver a complete view of a patient population. In fact, multiple studies have shown that nearly 80% of health outcomes are attributed to what happens beyond the walls of a health system.

You can address these gaps with a comprehensive data acquisition strategy that leverages not only at EHR data but also administrative datasets, claims datasets, and governmental datasets. You can also use specialized case report forms, provider and patient surveys, and other methods for collecting patient-sourced data.

Collecting data in which you're able to assess root causes of health issues by having all sorts of associated factors that are at play will also enable you to effectively pursue data-driven interventions to improve outcomes and improve care delivery by our providers.

Advanced Registry Analytics

Once you start collecting data, you need to be able to use it to answer the right questions. Enter advanced analytics.

In healthcare, questions seem endless – especially with any emerging issue or research priority. These questions fall into four common types, and there are specialized analytics to address each.

  • What happened? Descriptive analytics answers this question by examining data from the past and producing dashboards around trend or benchmarking data. The uses of descriptive analytics can be very limited, especially for healthcare stakeholders who ultimately want to influence health outcomes and have foresight into what might happen in the future.
  • What is likely to happen next? Predictive analytics answers this question using modeling and forecasting techniques. Predictive analytics can have limitations, as it is based on determining what will happen if all conditions remain the same, and healthcare leaders often want to understand what will happen after novel interventions or actions.
  • What will the effects be if we take some type of action? Prescriptive analytics answers this question using machine learning and numerous inputs to suggest a course of action. For example, decision support calculators use real-time patient data and prescriptive analytics to determine optimal treatment courses based on expected outcomes and likely complications.
  • What do we need to explore further? Discovery analytics answers this question using machine learning to analyze raw data, which allows it to determine interconnections, patterns, and outliers that warrant further exploration.

Step 3: Leverage a Flexible Data Infrastructure to Pivot at Any Time

Your new aims, data strategy, and analytics approach can come to life with flexible registry technology and the right registry partner. Modern clinical data registries are designed to evolve as your needs change. Your clinical data registry technology should provide you the ability to:

  • Ingest data and apply analytics in real time.
  • Collect new data fields and add new measures.
  • Rapidly design, build, and distribute patient and provider surveys.
  • Intelligently make data available and accessible via web-based reports and dashboards.

Each of the organizations below leveraged their flexible registry technology and data infrastructure to be proactive in measuring, monitoring, and addressing the COVID-19 pandemic.

  • Sound Physicians embedded logic into their analytics technology and steps into their clinical workflows to understand the coronavirus impact on daily admissions, bed capacity, resource utilization, provider well-being, and standard acute care, at a local, regional, and national level. (Read this blog post to learn more about how the largest hospitalist group in the U.S. uses data and analytics to understand COVID-19).
  • The Extracorporeal Life Support Organization (ELSO) is using registry data and insights to lead education efforts around the use of extracorporeal life support (ECLS) and extracorporeal membrane oxygenation (ECMO) as a treatment for patients with COVID-19. (This blog post explains more about how a global ECMO organization uses a patient registry to track and educate on COVID-19.)
  • The American Society of Clinical Pathology (ASCP) launched COVID-19 specific reports in its National Pathology Quality Registry to better understand positive, negative, inconclusive, and cancellations. They are also tracking test processing times.
  • The Palliative Care Quality Collaborative (PCQC) rapidly designed, built, and deployed a survey to collate experiences of palliative care clinicians in caring for COVID-19 positive, PUI (Person Under Investigation), and recovered patients. They plan to share these experiences with the palliative care community to drive understanding and clarity in the field through continuous learning. (Learn more about how PCQC quickly adapted their registry.)
  • The National Hemophilia Foundation (NHF) added COVID-19-specific questions to patient surveys that inform their research registry centered exclusively on patient-sourced data.
  • Conquering CHD launched InformCHD, a patient-reported database, that will collect information directly from people with congenital heart disease who are potentially at risk for severe complications related to COVID-19. (Read more here about how they are using patient-sourced data to understand COVID-19 and Congenital Heart Disease.)

The Right Registry Technology Makes Discovery Possible

The ultimate purpose of a clinical data registry is to accurately observe, measure, and understand the true realities of healthcare today. Emerging questions and issues, along with the complexities of real-world data, make this more challenging. None of this important work comes easy. But, as Galileo once said, “All truths are easy to understand once they are discovered.”

When it comes to developing and growing clinical registries that address today’s most important questions, the right technology can support this discovery.

How the Largest Hospitalist Group in the U.S. Is Using Data and Analytics to Understand COVID-19

How the Largest Hospitalist Group in the U.S. Is Using Data and Analytics to Understand COVID-19

How the Largest Hospitalist Group in the U.S. Is Using Data and Analytics to Understand COVID-19

Sound Physicians is a national medical group focused on acute, hospital-based care. Sound is the largest hospitalist and critical care group in the United States, with more than 3,500 physicians and advanced practice providers in hospital medicine, intensive care, and emergency medicine, at more than 250 hospitals located in 36 states.

In addition to its national scale, Sound is also a leader in physician performance and analytics. They rely on an advanced analytic and IT infrastructure and workflow to improve care, manage performance, and monitor trends.

Real-Time Monitoring to Manage COVID-19

Sound has been monitoring and managing COVID-19 since early 2020 when the first cases started occurring in the United States. In addition to ensuring patients receive appropriate care and achieve the best outcomes, the safety and protection of clinicians is top priority.

Sound’s Chief Clinical Officer, John Birkmeyer, M.D., put it this way in a recent interview with the NEJM Catalyst:

“Our major focus in reacting to the COVID-19 epidemic has been to retool our nationwide IT platform to track in real time which patients have COVID in the presence or absence of testing confirmation. That same IT tool not only applies to patients that have COVID but simplifies our team’s approach to be able to concentrate those patients on specific teams and in specific parts of the hospital.”

Leveraging their proprietary charge documentation application, Sound embedded logic into their technology and steps into their clinical workflows to prompt physicians to identify whether the patient is being treated for and/or tested positive for COVID. Physicians are prompted to answer this question, at both admission and discharge, for any patient presenting with a primary diagnosis of coronavirus, respiratory illness, or sepsis without another cause.

This near real-time data drives ArborMetrix analytic and reporting tools, from which Sound users can gather insights to understand the coronavirus impact on daily admissions, bed capacity, resource utilization, provider well-being, and standard acute care, at a local, regional, and/or national level. 

As Dr. Birkmeyer told NEJM Catalyst:

“The other advantage of that type of real-time tracking, particularly given all of the fluidity involved in growth in admission rates, is that it allows Sound as a national organization to better keep its finger on the pulse of the epidemic. Specifically by us appreciating what the prevalence is at any one of our sites, it allows us to tailor our support to the hospital sites and to the physician teams that need that most. Sometimes that support focuses on the availability of PPE equipment — and specifically, where we can, backstopping shortages of N95 masks. But that type of support also extends to providing emotional support and well-being services to physicians who are significantly stressed.”

Sound’s coast-to-coast footprint provides them with a nationally-representative database on COVID admissions, treatments, and outcomes across all of their partner hospitals. This expansive data positions Sound with the unique opportunity to help state governments, federal bodies, media, and other stakeholders, understand the national impact of the pandemic, as it relates to virus spread, population impact, and healthcare resource utilization.


This map from April 21, 2020, shows the volume of suspected COVID-19 cases at Sound Physician partner hospitals in the continental U.S.

Nationwide COVID-19 Dataset Drives Research

Additionally, Sound is partnering with academic researchers to use the data in order to understand:

  • The impact the COVID-19 pandemic has on hospitalizations for acute medical illness.
  • Risk of infection among front-line healthcare professionals.
  • Risk factors for adverse outcomes of COVID-19 in hospitalizations.
  • Effects of state social distancing orders on COVID-19 hospitalizations.
  • Effects of COVID-19 pandemic on stress and burnout in healthcare professionals.

Through their partnership with ArborMetrix, Sound is able to provide their field leadership and users with interactive reporting tools based on near real-time data, to gain key clinical insights as to how COVID-19 is impacting daily admissions, bed utilization, resource utilization, and provider safety. Armed with data and analytics, Sound is positioned to be a leader in the fight against the coronavirus.

If you have any questions about these programs or would like to learn more about our healthcare analytics solutions for physician organizations or contact us here.