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%.

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?

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.

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.

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