Development of Data Technical Standards and Gap Analysis and for the Paul Coverdell National Acute Stroke Registry 30 day Follow-Up Data

Project Results: To view the PowerPoint presentation from CHIIC's February 2016 meeting, click here. 

Project Status: Completed

Point of Contact: Sallyann Coleman King

Center: NCCDPHP

Keywords: Coverdell, Stroke, Registry, Data Standards, Technical Standards, Data Specifications, and Technical Specifications

Project Description: Background: The Paul Coverdell National Acute Stroke Registry initiated in 2004 as a state-based registry to measure and track acute stroke care with a focus on quality improvement to improve inpatient care. The CDC provides funding and technical assistance to states to evaluate stroke related data and guide quality improvement interventions with more than 250,000 patients benefiting from this quality improvement since its creation. Over time, Coverdell has expanded to measure, track and improve the quality of care for patients from the onset of stroke symptoms through rehabilitation and recovery. Coverdell has successfully helped identify and implement strategies to improve inpatient care. In the current FOA further progress has been made to better understand the challenges which exist in the interval where patients are picked up by EMS and taken to the hospital and the challenges which exist when the patient transitions from the hospital to their next care setting (e.g. home, inpatient rehabilitation, nursing home). Through our current work in transitions of care, we’ve recognized the need for a more comprehensive understanding of what occurs in the early days to weeks after patients leave the hospital. ”During this period there are a host of potentially preventable events that could result in a stroke patient’s readmission. However, we currently lack an adequate understanding of which events are more likely to lead to readmission.”

Experience collecting post-discharge data: One of our currently funded states is collecting 30 day follow up information from 4 of their hospitals. A nurse or stroke coordinator calls the patients by phone 2-30 days after discharge from the hospital post-stroke. During these calls, the patient is asked approximately 30 questions about topics such as medication adherence, falls, patient follow up visits with their healthcare providers, and the effectiveness of patient education before their discharge. The calls take approximately 20 minutes. The topic areas were created by the hospitals involved and have provided a great deal of insight into potential areas of concern which may significantly contribute to patient readmissions after discharge and which may be nicely amenable to quality improvement efforts. While we believe there are key areas where quality improvement interventions may improve readmission rates, cost and patient outcomes, we lack the data needed to improve patient outcomes in the early post-discharge period.

Current Data Collection: Currently, inpatient data is collected for Coverdell using a Quintiles web-based interface called Get with the Guidelines or through the creation of a state-based interface and data is sent to CDC quarterly from the states. In other words, Get with the Guidelines does not collect post-discharge data. The Get with the Guidelines system is costly to the hospitals and even small changes to the data elements are arduous and cost prohibitive. Furthermore, the memorandums of understanding also require that data collected through Get with the Guidelines be the property of the American Heart Association. In order to better understand what occurs in the early days to weeks after patients leave the hospital, 4-5 states have created different methods for data collection. One of these states is currently collecting data through an Access database which they send to the hospital on a monthly basis for the nurse or stroke coordinator to complete. The Access database then must be encrypted and sent back to the state. The state works to create basic reports for each hospital regularly to inform their quality improvement efforts. Hospitals lack the technical expertise needed to perform these tasks. Even with only 4 participating hospitals, this process has proven to be inordinately time consuming for the state and the hospital staff and while the hospitals feel the information garnered has great value, the time intensive nature is unsustainable. Outside of the state that created the Access database, it is unknown if the other states approaches are in any better position to be scaled. Further, without a better definition of the data collection requirements, it is unclear what kind of technical solution would be the best fit for grantees.

Project: In our upcoming FOA (due October 2014) we will be requesting that the 5 states selected for funding continue the work currently being done across the stroke spectrum of care. A yet-to-be-determined percentage of that award will be focused on enabling hospitals across the grantee’s state to begin easily collecting 30 day follow-up data. How they should accomplish this requirement is the focus of this project. We are requesting $50,000 to support an evaluation and gap analysis of the current data collection tools being utilized in several of the Coverdell funded states. With at least one state using an Access database, scaling such a system is a common challenge across CDC as well as states. Depending on the results of the evaluation, there may be more suitable technologies and/or approaches to support this kind of data collection. A key output of this project will be guidance for state awardees on how best to implement a data collection system.

Impact: This will be invaluable guidance to our states and assure there are clear and common expectations for data needs as well as provide specifications for the collection of secure patient-level data that can be linked to existing hospital data. This funding would provide language which would help ensure accountability of agency funding and improve the quality of our 30 day surveillance data. This in turn will facilitate the creation and implementation of useful quality improvement interventions which will directly impact patient readmissions and outcomes.

Groups across CDC are frequently faced with the challenge of facilitating data collection while assuring that funded sites have clear expectations of the required technical specifications. The technical specifications created through this funding could be tailored to suit the needs of other programs across the agency for use in their funding announcements thereby ensuring accountability, reducing redundancies, addressing system usability and data security, improving the quality of surveillance data, and providing maximal impact.

For more information about this project, please contact the CHIIC at chiic@cdc.gov or Brian Lee at brian.lee@cdc.hhs.gov.