By Mary Butler
It’s impossible to fight a pandemic without data, and problematic data has been a recurring theme in the coverage of COVID-19; it’s been inaccurate, suppressed, inconsistent, manipulated, hard to extract and interpret—or altogether unavailable. A new partnership between LabCorp and Ciox aims to alleviate these issues by building a comprehensive US-based COVID-19 patient data registry using each organization’s considerable clinical resources. LabCorp has performed hundreds of thousands of COVID-19 tests while Ciox has the capacity to retrieve and abstract millions of comprehensive patient records across the US. The data sets created through the partnership will be supplemented with additional longitudinal medical record data, compiled using Ciox’s proprietary platform.
Patty Sheridan, MBA, RHIA, FAHIMA, senior vice president for real world data market development and Julie Rockey, MBA, RHIA, vice president, real world data operations at Ciox, recently sat down with the Journal to discuss how researchers can use the new registry and how health information management professionals are central to the data collection aspect of this pandemic.
JAHIMA: What is the goal of the Ciox and LabCorp COVID-19 registry?
Patty Sheridan: There are thousands of disease registries, which are really a way of creating a de-identified data set so that researchers can evaluate specific populations, might be related to a disease, or a procedure, or a particular drug therapy, and really study the outcomes. So it would be natural to want to create a COVID-19 registry and there are a number of COVID-19 registries that have popped up that are very specific to certain diseases like heart conditions or respiratory conditions but none like this partnership which is a national COVID-19 registry.
Our goal of the LabCorp-Ciox registry is to take a national perspective and really look at COVID-19 more broadly—and enable researchers to ask the questions of interest to them. So they might be interested in better understanding the circumstances when someone has a cytokine storm, for example, when their immune system goes on overdrive, what might be the things going on systemically with that individual.
Julie Rockey: The registry is going to include patients that have been tested for COVID-19 positive and/or negative. And our initial work that we’re doing right now is focused on the positive patient population overall and then the data will largely come from the work of Ciox and our ability to integrate medical record data from across the country for a patient, regardless of the care setting they’ve been in, and the facility they’ve been seen at. So I would say we’re truly creating an interoperable de-identified patient registry that goes across the care continuum, across facilities, and really looking for patients and where they’ve had data, whether it’s for their acute care, their primary, tertiary, you name it.
JAHIMA: A lot of people are talking about the need for data and having good actionable data during this crisis. What kind of gaps were you looking to fill with the creation of this registry? Or do you feel that the data you’re tracking will fill some need?
PS: There are so many gaps that I think just getting into the data to try to answer the questions around why some people get so sick and why others don’t—how underlying conditions impact outcomes. The issues potentially around reinfection, learning more about the cytokine storms. I think the fact that we’re using the medical record as the source data as opposed to claims data, or smaller populations, will enable us to get in and answer whatever question is important. I think what we’re seeing right now is that the studies are too small. Even just to assess the variation that we’re seeing in the data and matching them to the best of our ability to social determinants of health, I think that would be important too.
JR: What is really unique and different is the thought of being able to have inpatient, outpatient, primary, specialty care [records], and our ability to go and work with the providers that we work with for decades at this point…It’s less about the data and more about the fact that we have the opportunity to have the full picture for a patient.
JAHIMA: What role does the Ciox team play in the creation of this registry and what are the skillsets of your real-world data operations team members?
JR: We are looking at the raw medical record data from a variety of perspectives. We’re not just focused on what exactly is happening for that patient in the here and now, from the day they test positive for COVID-19 forward. We are true, eyes wide open, looking at the record to see, did a patient have a cardiac event two years ago? Did the patient have chemotherapy? Did they have prior surgical procedures? We’re literally poring over these records and looking at a comprehensive view of that patient.
Our team has professionals with a deep clinical understanding of the data. We have a practicing nurse practitioner who leads the real-world data integrity operations for example. Our team includes RHIAs, NPs , RNs, and RNs that have deep specialties like oncology nursing. We work with people that are really skilled in technology, whether it’s database programming, natural language processing, and things of that nature. Our team also includes nurses, that work on the frontlines in the clinical care settings, and want to do this type of work because they want to see the cause and effect—‘I’ve treated this patient at the bedside. How does that data I collect every day result in a real actual outcome that may impact the next mom, or dad, or brother, or sister that will present to the clinic, in the next few weeks or months?’
JAHIMA: How are HIM professionals—including those involved directly with data collection, as well as coders—contributing to the care and treatment and research of people who have been sickened during this pandemic?
JR: I feel emotional when I talk about this. It’s like, how do you take the reality of folks that you either worship with, you see in the grocery store, are putting themselves—their lives—at risk with the work being done today? I sit in my home office looking out at green fields and pastures where it’s beautiful compared to frontline staff. … So you don’t have to be walking into hot spot hospitals to have an impact. I say all this because, while we may not be the ones putting nasal cannula in somebody’s nose to give them life, to give them breath, we are collecting data—data on hospitalized patients but also on the large portion of patients that test positive and are at home and self-caring. We want to hopefully get to a point where there is a way to identify symptoms before being in an acute situation where you have to be hospitalized. In no way should our profession, our skillset, be looked at as the folks that are off in the distance. In my mind, we should be—and are—in the spotlight. Without the data that HIM and coders are collecting and liberating there would be no research from which to conduct —it’s that work that will lead to research to create a vaccine or a pill or insights the scientific community discovers that will lead to a state of new normalcy.
Mary Butler ([email protected]) is senior editor at the Journal of AHIMA.
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