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:
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.
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.
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:
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.
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.
Addressing new and emerging health issues requires rapid measurement and quick discoveries.
It involves having the right framework that involves two things:
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.
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.
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:
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.
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.
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