Mission & Vision
ACCQUIREnet's mission is to bring together multidisciplinary teams to improve the health and well-being of children with cleft lip/palate and other craniofacial conditions. We strive to accomplish this mission through five main pillars of work:
- to promote the collection of holistic and patient-centric outcomes metrics according to standardized, prospective data-collection protocols;
- to facilitate electronic data capture, storage, and analysis, transforming data into actionable information;
- to guide teams in performing quality-improvement projects;
- to enable robust prospective and cross-sectional research using multi-site, "real world" evidence; and
- to serve as a vector for dissemination and implementation of "best practices" across teams.
Our vision is a future where all teams — as active participants in standardized outcomes measurement and analysis — have access to the information needed to adopt evidence-based treatment protocols and to conduct timely and impactful quality-improvement projects.
Why We Exist
Many cleft and craniofacial teams in the United States currently find it difficult to track surgical complications and lack standardized data, which is imperative when analyzing such complications. You can’t improve a team’s surgical quality if you can’t measure it; and to do this robust, valid data is needed. ACCQUIREnet is a group of cleft teams dedicated to providing in-depth, standardized data in order to measure and compare cleft team outcomes and identify evidence-based best practices. The ACCQUIREnet network will not only be used for data collection but will also serve as a vehicle by which to disseminate best practices and evidence-based protocols of care across cleft teams in the region.
Cleft lip and/or palate (CL/P) is among the most common of birth defects, affecting one baby born in the United States every two hours. Children with CL/P may be functionally disabled (with regard to eating, speaking, breathing, and hearing) and may carry the visible stigma of being “different” unless provided appropriate care. This care is necessarily complex – provided at specific stages from infancy through young adulthood – and is best coordinated by an integrated, multidisciplinary team. Despite the benefits of team-based care, some children with CL/P are never referred to a team (thus receiving limited services in the community); other children who begin care with a team may become lost to follow-up over the years. As both scenarios may result in failure of provision of essential care at the appropriate time, there is a critical need to understand where there exist barriers to obtaining care, disparities in care provision, and risk factors for poor adherence to care and/or poor outcomes. It is only by identifying these factors that impactful strategies for improvement may be developed and implemented.
Although population-based methods for improving the quality of cleft care are not well-developed in the United States, teaching and feedback programs for cleft teams in Europe have resulted in significant improvement in cleft surgical team’s outcomes. These results provide empirical support for targeting cleft teams for quality improvement. Moreover, because United States lacks a national health-care system to mandate evidence-based changes to practice, we have established a regional collaborative — the Allied Cleft and Craniofacial Quality-Improvement and Research Network (ACCQUIREnet).
According to the American Cleft Palate-Craniofacial Association (ACPA)’s Standards for Interdisciplinary Team Care, Standard 6, a Cleft Surgical Team should “use a process to evaluate its own performance with regard to patient assessment, treatment, or satisfaction and to make improvements as a result of those evaluations. The team should documents its treatment outcomes, including baseline performance and changes over time. Teams must conduct periodic retrospective or prospective studies to evaluate treatment outcomes. The team must also have a quality management system to evaluate patient/family satisfaction”. Unfortunately many cleft teams lack the systematic approach or tools necessary to do this.
The purpose of this project is to develop reproducible and scalable methods for answering fundamental questions about cleft care. Specifically, we would like to characterize the population that is served (or left unserved) by cleft teams, describe team performance, and compare team outcomes. To do this Electronic Health Record (HER)-type data will be aggregated from our three existing cleft teams (Duke University, University of North Carolina, Chapel Hill, and Wake Forest University) by way of the PCORnet Common Data Model. The Common Data Model, developed by PCORnet, is a key component of our research infrastructure and central to our work. PCORnet’s Common Data Model standardizes millions of data points from a variety of clinical information systems into an innovative common format that can be used for specified research projects.
ACCQUIREnet collects information on the treatment of children with a cleft lip and/or palate and the outcome of these treatments so that we may use the data collected to audit and report on the quality of care for patients with clefts, to promote high standards in clinical management; seek and use linkage to other national databases for validation purposes, to enhance the data recorded in ACCQUIREnet, to reduce data collection burden for cleft teams, and be able to more thoroughly report on the impact of cleft care on patients’ outcomes to improve the delivery of cleft care. Ultimately the data collected by this network will lead to improved access to cleft teams, rectify disparities in care provision, and improve short- and long-term outcomes of cleft care.