Unlocking Potential within Health Systems Using Privacy-Preserving Record Linkage: Exploring Chronic Kidney Disease Outcomes through Linked Data Modelling

Abstract

Background Chronic kidney disease (CKD) is a major global health problem that affects approximately one in 10 adults. Up to 90% of individuals with CKD go undetected until its progression to advanced stages, invariably leading to death in the absence of treatment. The project aims to fill information gaps around the burden of CKD in the Western Australian (WA) population, including incidence, prevalence, rate of progression, and economic cost to the health system. Methods Given the sensitivity of the information involved, the project employed a privacy preserving record linkage methodology to link data from four major pathology providers in WA to hospital records, to establish a CKD registry with continuous medical record for individuals with biochemical specification for CKD. This method uses encrypted personal identifying information in a probability-based linkage framework (Bloom filters) to help mitigate risk while maximizing linkage quality. Results The project developed interoperable technology to create a transparent CKD data catalogue which is linkable to other datasets. This technology has been designed to support the aspirations of the research program to provide linked de-identified pathology, morbidity, and mortality data that can be used to derive insights to enable better CKD patient outcomes. The cohort includes over 1 million individuals with creatinine results over the period 2002 to 2021. Conclusion Using linked data from across the care continuum, researchers are able to evaluate the effectiveness of service delivery and provide evidence for policy and program development. The CKD registry will enable an innovative review of the epidemiology of CKD in WA. Linking pathology records can identify cases of CKD that are missed in the early stages due to disaggregation of results, enabling identification of at-risk populations that represent targets for early intervention and management.

Optimizing Care Delivery in Patients with Chronic Kidney Disease in the United States: Proceedings of a Multidisciplinary Roundtable Discussion and Literature Review

“…Although suggestions have been made, the best method to improve the identification of patients with early-stage CKD is unknown. The first step for an optimal patient journey is identifying those at the greatest risk, perhaps by using an early CKD identification registry or qualification list that is uncapped [ 98 , 99 ]. Purely building off existing lists or registries (such as the National Kidney Foundation Patient Network or institutional EHRs) is not straightforward and likely will be more time consuming than focusing on the highest-risk patients (i.e., cardiorenal–metabolic-type patients, characterized by a combination of type 2 diabetes, hypertension, hyperlipidemia, CKD, and heart failure).…”

Engaging Patients and Other Stakeholders in “Designing for Dissemination” of Record Linkage Methods and Tools

“…8 Record linkage (RL) methods are among the recent advances in secondary use of clinical and claims data for research. [9][10][11] RL refers to the technical and analytic methods for effectively and securely matching patient records from multiple distinct health systems and data platforms, such as electronic health records, administrative claims, patientreported outcomes measures, and digital health devices. [12][13][14] RL has several benefits for research, such as enhancing the amount and types of information available about each patient (e.g., information about all services a patient has received, what prescriptions have been filled, how much physical activity they have done, and their quality of life), which are not typically all included in one data source.…”

A importância do diagnóstico precoce da doença renal crônica na atenção primária à saúde

“…Por isso, conforme os estudos de Tuot DS, et al (2022), Grill AK e Brimble S (2022) e Major RW, et al (2022) a utilização de ferramentas capazes de detectar, auxiliar no manejo e acompanhar a progressão da DRC é de suma importância para equipes de saúde da atenção primária e pacientes com a patologia renal, pois propicia um melhor conhecimento sobre o curso da doença e, dessa forma, proporciona as melhores formas de cuidados (LIM, et al, 2022).…”