scholarly journals Linking Registry Data with Australian Medicare And Medication Dispensing Claims Data: Feasibility, Benefits and Limitations

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Nadine E Andrew ◽  
Dominique A Cadilhac ◽  
Vijaya Sundararajan ◽  
Amanda G Thrift ◽  
Phil Anderson ◽  
...  
Keyword(s):  
Claims Data ◽  
Stroke Care ◽  
Clinical Registry ◽  
Quality Registry ◽  
Clinical Registries ◽  
Medicare Data ◽  
Data Custodian ◽  
Potential Impact ◽  
Death Date ◽  
Medication Dispensing

IntroductionRecent advances in Australia mean that it is possible to link national clinical registries with government held administrative datasets. However, formal evaluations of such activities and the potential impact for research are lacking. Objectives and ApproachWe aimed to assess the feasibility and accuracy of linking registrants from the Australian Stroke Clinical Registry (AuSCR) with the Medicare enrolment file. Following data custodian and ethics approvals, personal linkage identifiers were submitted to the Australian Institute of Health and Welfare (AIHW). De-identified data from AuSCR and the AIHW were submitted into the Secure Unified Research Environment and merged using project specific person-based IDs. We calculated the proportion of patients linked with the Medicare enrolment file that were present in the associated Medicare and medication dispensing datasets and the proportion with claims after their date of death. Logistic regression was used to identify factors associated with a non-merged patient. Results17,980 AuSCR registrants (January 2010-July 2014) were submitted for linkage (median age 76 years; 46% female; 67% ischaemic stroke; 16% TIA). Of these, 93% were merged with Medicare (N=16,648) and 95% with subsidised medication dispensing claims data (N=17,079). In those who died, 127 (0.8%) had one or more Medicare claim and 411 (2.4%) had one or more medications dispensed after their death date. Asian born registrants were less likely to be merged with Medicare (adjusted Odds Ratio [aOR]: 0.54; 95% Confidence Interval [CI]: 0.40, 0.72) than Australian born registrants. Those aged ≥85 years were less likely to be merged with Medicare data than those aged <65 years (aOR 0.24; 95% CI: 0.19, 0.29) but were more likely to be merged with dispensing data (aOR: 2.22 (95% CI: 1.73, 2.84). Conclusion/ImplicationsLinkage between a national clinical quality registry and the Medicare spine is feasible. These linkages will provide novel insights into post-stroke care.

Abstract 332: Toward Big Data: Integrating Cardiovascular Registry and Claims Data to Create a Clinical Practice-based Analytical Platform

2015 ◽  
Vol 8 (suppl_2) ◽  
Author(s):  
Gregory P Hess ◽  
Eileen Fonseca ◽  
James Beachy ◽  
Frederick A Masoudi ◽  
John S Rumsfeld
Keyword(s):  
Big Data ◽  
Claims Data ◽  
Big Data Analytics ◽  
Private Practitioner ◽  
Great Promise ◽  
Implantable Cardioverter Defibrillators ◽  
Clinical Practices ◽  
Clinical Registry ◽  
Coronary Syndrome ◽  
Clinical Registries

Background: There is great promise in ‘big data’ analytics that leverage multiple data sources including clinical registries and claims data, creating large, broadly distributed, and clinically detailed analytical platforms to study a range of cardiovascular topics, including practice patterns associated with optimal clinical outcomes. Objective: Describe a newly created integrated analytical platform utilizing U.S. cardiovascular registry records and healthcare claims data from real-world clinical practices. Methods: The analytical platform includes records from five American College of Cardiology (ACC) National Cardiovascular Data Registry programs and pharmacy, private practitioner and hospital claims data from Symphony Health Solutions (SHS). The NCDR registries include ≈ 650,000 patients in ACTION Registry-GWTG (acute coronary syndrome), 6.7m in CathPCI (diagnostic cardiac catheterizations and PCI), 660,000 in ICD (implantable cardioverter defibrillators), 33,000 in IMPACT (pediatric and adult congenital treatment) and 3.4m in PINNACLE (ambulatory CAD, HTN, HF and AFib). With history as early as 2003, SHS currently receives one or more pharmacy, practitioner or hospital claims annually for ≈274m patients in the U.S. All payer types are represented, including self-pay pharmacy patients. Patient inclusion criteria: 1) Data within 2006 [[Unable to Display Character: &#8211;]] 2014, 2) one or more records in ≥ 1 of 5 NCDR registries, 3) one or more claims observed in ≥ 1 of 3 SHS datasets: pharmacy, private practitioner or hospital claims, 4) populated data fields enabling generation of a unique, patient-level, synthetic identifier (ID) for matching and longitudinal linkage across the registry(s) and the dataset(s). The analytical platform has been developed using a HIPAA and HITECH compliant, certified approach. Results: Over 8.7 million patients have been successfully linked between the NCDR registries and the SHS claims data. On average, 95% of patients in the registry(s) sample was also observed and matched in the SHS datasets. Conclusion: High match rates were observed between the ACC and SHS data, identifying large populations of patients with cardiovascular disease. Clinical registry data combined with longitudinal claims data will generate a ‘broad’ and ‘deep’ data platform for analytics of quality of care and outcomes.

Abstract TP356: Post-Acute Stroke Experience Survey- Development and Pilot Testing

Stroke ◽  
2020 ◽  
Vol 51 (Suppl_1) ◽  
Author(s):  
Jane A Anderson ◽  
Barbara Kimmel ◽  
Kirt Martin ◽  
Anette Ovalle ◽  
Chizoba Ifeorah ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Insurance ◽  
Care Provider ◽  
Primary Care Provider ◽  
Claims Data ◽  
Stroke Care ◽  
Insurance Status ◽  
Stroke Survivors ◽  
Health Insurance Status

Background: Administrative claims data show variability in post-acute stroke care. Stroke survivors without health insurance are not included in claims data statistics. The PASES survey was developed and tested to describe stroke care experience of underserved survivors participating in V-STOP a telehealth self-management program. Methods: Semi-structured interviews were completed to elicit feedback from survivors on experiences during their stroke event, emergency and hospital care, and after discharge. Items on PASES were established based on participants’ responses and survey was piloted in a sample of underserved survivors (N=95). Descriptive statistics and Chi-square analysis were applied to describe stroke survivors’ experiences and differences based on health insurance status. Results: The sample was 45% female, mean age 57, 18% Black and 60% Hispanic. Most (60%) had an annual income of less than $25,000 and 44% had no insurance. Only 25% reported calling 911. However (60%) report presenting to a hospital within 2 hours of stroke symptoms recognition. Nearly half (42%) reported not knowing whether they received a “clot dissolving” medication. Fifty-four percent did not receive rehabilitation after discharge. Eighty-percent reported seeing a healthcare provider after discharge. Most (61%) saw a primary care provider and 22% saw a neurologist. However, only 24% reported seeing a provider within one month of hospital discharge. No significant differences were identified between insured vs. uninsured with respect to race, ethnicity, income, calling 911, receiving inpatient rehab, seeing a provider after discharge and follow up with primary care provider vs. neurologist. Significant differences were identified between insured vs. uninsured with respect to presenting to a hospital within 2 hours of stroke symptoms (35 vs 18 [p=0.023]) and in receiving no rehab after discharge (27 vs 12 [p=0.02]). Conclusion: Results suggest low utilization of EMS, delayed presentation to hospital, limited access to rehabilitation after discharge and limited access to timely follow-up with stroke specialist among underserved stroke survivors. Health insurance status may influence delayed hospital presentation and access to rehabilitation services.

The Australian Calciphylaxis Registry: reporting clinical features and outcomes of patients with calciphylaxis

2019 ◽  
Author(s):  
Irene Ruderman ◽  
Nigel D Toussaint ◽  
Carmel M Hawley ◽  
Rathika Krishnasamy ◽  
Eugenia Pedagogos ◽  
...  
Keyword(s):  
Risk Factors ◽  
Kidney Disease ◽  
Vitamin K Antagonists ◽  
Patient Characteristics ◽  
Lower Limbs ◽  
Kidney Transplant Recipients ◽  
Clinical Registry ◽  
Clinical Registries ◽  
Disease Outcomes ◽  
Dialysis Vintage

Abstract Background Calciphylaxis is a rare disease, predominantly affecting patients with chronic kidney disease (CKD) and associated with significant morbidity and mortality due to progressive cutaneous calcification, necrotic ulceration and infection. Clinical registries have been established to better understand the risk factors, optimal treatments and disease outcomes of calciphylaxis. Methods We established a prospective, Internet-based clinical registry for the online notification of calciphylaxis cases in Australia. Seven institutions participated, with data recorded on patient characteristics, biochemical parameters, treatments and disease outcomes. Results Between 2014 and 2019, 47 cases of calciphylaxis were registered. The mean patient age was 66 ± 11 years and body mass index was 35 ± 9 kg/m2, with a higher proportion of females (51%). Eighty-seven percent of patients had end-stage kidney disease (ESKD), with 61% on hemodialysis or hemodiafiltration, with a median dialysis vintage of 4.8 [interquartile range (IQR) 1.7–7.4)] years. Five patients had CKD not requiring dialysis and two were kidney transplant recipients. Diabetes was present in 76% of patients and the cause of ESKD in 60%; 34% received vitamin K antagonists (VKAs) before diagnosis. The median parathyroid hormone level at diagnosis was 32 (IQR 14–50) pmol/L. The most common site of calciphylaxis was the lower limbs (63%), with 19% of patients having more than one area involved. Ten patients (22%) had a resolution of calciphylaxis and 25 died, with 50% mortality at a median of 1.6 (IQR 0.2–2.5) years from diagnosis. Conclusions The Australian Calciphylaxis Registry highlights risk factors for calciphylaxis, including diabetes, obesity and VKA use. Resolution of calciphylaxis is uncommon despite multimodal therapy and mortality from calciphylaxis in the first year following diagnosis remains high.

Leveraging Existing Tools in Electronic Health Record Systems to Automate Clinical Registry Compilation

2020 ◽  
Vol 162 (3) ◽  
pp. 408-409
Author(s):  
Alisha Williams ◽  
William Goedicke ◽  
Kristin A. Tissera ◽  
Leila A. Mankarious
Keyword(s):  
Hearing Loss ◽  
Health Record ◽  
Data Input ◽  
Software Suite ◽  
Clinical Registry ◽  
Health Records ◽  
Clinical Registries ◽  
Time Burden ◽  
Research Questions ◽  
Medical Health

Clinical registries have proven beneficial by providing a resource to address research questions, monitor care, and identify suitable subjects for clinical studies. Despite a well-organized registry, population is often low because of the human capital required. The increasing prevalence of electronic medical health records provides the opportunity to integrate registry compilation into routine patient encounters. Here we describe how one tool existing within the Epic Medical Record software suite, Smart Phrases, can be adapted to automate population of a hearing loss patient registry. The usage rate of Smart Phrases was high and resulted in a significant reduction in the time burden associated with registry population. Use of Smart Phrases could become an important factor in the design of future registries that allow broad uptake and convenient data input.

scholarly journals Using Both Clinical Registry and Administrative Claims Data to Measure Risk-adjusted Surgical Outcomes

2016 ◽  
Vol 263 (1) ◽  
pp. 50-57 ◽  
Author(s):  
Elise H. Lawson ◽  
Rachel Louie ◽  
David S. Zingmond ◽  
Greg D. Sacks ◽  
Robert H. Brook ◽  
...  
Keyword(s):  
Surgical Outcomes ◽  
Claims Data ◽  
Administrative Claims ◽  
Clinical Registry ◽  
Administrative Claims Data

scholarly journals The incidence of congenital heart disease: Previous findings and perspectives

2014 ◽  
Vol 142 (3-4) ◽  
pp. 243-248 ◽  
Author(s):  
Vesna Miranovic
Keyword(s):  
Congenital Heart ◽  
Fetal Echocardiography ◽  
Heart Defects ◽  
Large Population ◽  
Clinical Registry ◽  
Number Of Patients ◽  
Potential Impact ◽  
Global Health Problem ◽  
Genome Projects

Congenital heart defects (CHD) are the most common of all congenital anomalies, and represent a significant global health problem. Involvement of medical professionals of different profiles has led to drastic changes in survival and quality of life of children with CHD. The motivation for the implementation of the first large population studies on this subject was not only to obtain answers to the question on the level of incidence of CHD, but the harmonization of criteria and protocols for monitoring and treatment of certain defects as well as the planning of medical staff dealing with children with CHD. Data on the incidence varies from 4-10/1000 live births. Fetal echocardiography can have potential impact on decrease of CHD incidence. The increase in incidence may be due to the possibility that children with CHD will grow up and have offsprings. Owing to the progress that has been made, an increasing number of patients experiences adulthood, creating an entirely new and growing population of patients: patients with ?adult? CHD. Survivors suffer morbidity resulting from their circulatory abnormalities as well as from medical and surgical therapies they have been subjected to. Application of the achievements of human genome projects will in time lead to drastic changes in the approach to the patients with CHD. Until the time when it is possible, the goal will be further improvement of the existing system of service: networking in a unique, multicenter clinical registry of patients with CHD, as well as upgrading of technical and non-technical conditions for the treatment of patients with CHD. We are in an unprecedented time of change, but are actually at the end of the beginning of making pediatric cardiac care a highly reliable institution.

scholarly journals Enhancing and accelerating stroke treatment in Eastern European region: Methods and achievement of the ESO EAST program

2020 ◽  
Vol 5 (2) ◽  
pp. 204-212
Author(s):  
Robert Mikulík ◽  
Valeria Caso ◽  
Natan M Bornstein ◽  
Veronika Svobodová ◽  
Francesca Romana Pezzella ◽  
...  
Keyword(s):  
Data Collection ◽  
Low Cost ◽  
Stroke Care ◽  
Steering Committee ◽  
Care Quality ◽  
Quality Improvement Intervention ◽  
Eastern European ◽  
Stroke Treatment ◽  
Quality Registry ◽  
Data Collection And Analysis

Introduction Despite the availability of prevention and therapies of stroke, their implementation in clinical practice, even of low-cost ones, remains poor. In 2015, the European Stroke Organisation (ESO) initiated the ESO Enhancing and Accelerating Stroke Treatment (EAST) program, which aims to improve stroke care quality, primarily in Eastern Europe. Here, we describe its methods and milestones. Patients and methods The ESO EAST program is using an implementation strategy based on a ‘detecting-understanding-reducing disparities’ conceptual framework: stroke care quality is first measured (after developing a platform for data collection), gaps are identified in the current service delivery, and ultimately feedback is provided to participating hospitals, followed by the application of interventions to reduce disparities. The ESO EAST program is carried out by establishing a stroke quality registry, stroke management infrastructure, and creating education and training opportunities for healthcare professionals. Results Program management and leadership infrastructure has been established in 19 countries (Country Representatives in 22 countries, National Steering Committee in 19 countries). A software platform for data collection and analysis: Registry of Stroke Care Quality was developed, and launched in 2016, and has been used to collect data from over 90,000 patients from >750 hospitals and 56 countries between September 2016 and May 2019. Training in thrombolysis, nursing and research skills has been initiated. Discussion ESO EAST is the first pan-Eastern European (and beyond) multifaceted quality improvement intervention putting evidence-informed policies into practice. Continuous monitoring of stroke care quality allows hospital-to-hospital and country-to-country benchmarking and identification of the gaps and needs in health care.

scholarly journals Preserving stroke care during the COVID-19 pandemic

Neurology ◽  
2020 ◽  
Vol 95 (3) ◽  
pp. 124-133 ◽  
Author(s):  
Enrique C. Leira ◽  
Andrew N. Russman ◽  
José Biller ◽  
Devin L. Brown ◽  
Cheryl D. Bushnell ◽  
...  
Keyword(s):  
Health Care ◽  
Stroke Care ◽  
Diverse Group ◽  
Allocation Of Resources ◽  
Ethical Considerations ◽  
Stroke Research ◽  
Potential Impact ◽  
Excellent Care ◽  
Available Information

The coronavirus 2019 (COVID-19) pandemic requires drastic changes in allocation of resources, which can affect the delivery of stroke care, and many providers are seeking guidance. As caregivers, we are guided by 3 distinct principles that will occasionally conflict during the pandemic: (1) we must ensure the best care for those stricken with COVID-19, (2) we must provide excellent care and advocacy for patients with cerebrovascular disease and their families, and (3) we must advocate for the safety of health care personnel managing patients with stroke, with particular attention to those most vulnerable, including trainees. This descriptive review by a diverse group of experts in stroke care aims to provide advice by specifically addressing the potential impact of this pandemic on (1) the quality of the stroke care delivered, (2) ethical considerations in stroke care, (3) safety and logistic issues for providers of patients with stroke, and (4) stroke research. Our recommendations on these issues represent our best opinions given the available information, but are subject to revision as the situation related to the COVID-19 pandemic continues to evolve. We expect that ongoing emergent research will offer additional insights that will provide evidence that could prompt the modification or removal of some of these recommendations.

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