Promising Use of Big Data to Increase the Efficiency and Comprehensiveness of Stroke Outcomes Research.

The gold standard for outcome assessment in stroke is provided by longitudinal population-based incidence studies with full case-ascertainment and repeated outcome assessments over time. This enables a comprehensive assessment of the burden of stroke that includes mortality, disability, adverse events, quality of life, and functional status and the effectiveness of the health system in relation to healthcare utilization. However, such purposeful collection of continuous data over a period of time for stroke surveillance is costly, and some patient-reported outcomes such as readmissions can be unreliable. It is, therefore, unsurprising that the number of currently ongoing incidence studies is limited. With the explosion of digital information, a broad range of health outcomes after stroke can be evaluated using new strategies for integrating administrative data with data from clinical studies or registries. In this article, we aim to describe approaches for the collection of outcomes data after stroke and their strengths and limitations. We further examine the utility of linking datasets to add value to stroke research, including ongoing stroke surveillance and outcomes reporting, and describe barriers to data linkage and to the use of administrative data in stroke research.

[1]  Ching-Lan Cheng,et al.  Home-Time as a Surrogate Measure for Functional Outcome After Stroke: A Validation Study , 2020, Clinical epidemiology.

[2]  C. Anderson,et al.  Maximising data value and avoiding data waste: a validation study in stroke research , 2018, The Medical journal of Australia.

[3]  C. Hsieh,et al.  Registry-based stroke research in Taiwan: past and future , 2018, Epidemiology and health.

[4]  J. Ioannidis,et al.  Routinely collected data for randomized trials: promises, barriers, and implications , 2018, Trials.

[5]  Eric E. Smith,et al.  Population-based study of home-time by stroke type and correlation with modified Rankin score , 2017, Neurology.

[6]  B. Jalaludin,et al.  Differentiating Incident from Recurrent Stroke Using Administrative Data: The Impact of Varying Lengths of Look-Back Periods on the Risk of Misclassification , 2017, Neuroepidemiology.

[7]  V. Feigin,et al.  Global Burden of Stroke. , 2017, Circulation research.

[8]  Gauthier Chassang,et al.  The impact of the EU general data protection regulation on scientific research , 2017, Ecancermedicalscience.

[9]  George Howard,et al.  Global stroke statistics , 2017, International journal of stroke : official journal of the International Stroke Society.

[10]  C. Hsieh,et al.  Validation of a novel claims-based stroke severity index in patients with intracerebral hemorrhage , 2016, Journal of epidemiology.

[11]  Jon Emery,et al.  Data Linkage , 2017, Encyclopedia of Machine Learning and Data Mining.

[12]  S. Johnsen,et al.  The Danish Stroke Registry , 2016, Clinical epidemiology.

[13]  R. Hall,et al.  How Reliable Are Administrative Data for Capturing Stroke Patients and Their Care , 2016, Cerebrovascular Diseases Extra.

[14]  N. Lannin,et al.  Addressing the challenges of cross‐jurisdictional data linkage between a national clinical quality registry and government‐held health data , 2016, Australian and New Zealand journal of public health.

[15]  Eric E. Smith,et al.  Hospital Variation in Home-Time After Acute Ischemic Stroke: Insights From the PROSPER Study (Patient-Centered Research Into Outcomes Stroke Patients Prefer and Effectiveness Research) , 2016, Stroke.

[16]  Hude Quan,et al.  Use and Utility of Administrative Health Data for Stroke Research and Surveillance , 2016, Stroke.

[17]  N. Lannin,et al.  National stroke registries for monitoring and improving the quality of hospital care: A systematic review , 2016, International journal of stroke : official journal of the International Stroke Society.

[18]  J. Brophy,et al.  Stroke in Adults With Congenital Heart Disease: Incidence, Cumulative Risk, and Predictors. , 2015, Circulation.

[19]  E. Banks,et al.  Using Australian Pharmaceutical Benefits Scheme data for pharmacoepidemiological research: challenges and approaches. , 2015, Public health research & practice.

[20]  Diane Lacaille,et al.  Validity of Diagnostic Codes for Acute Stroke in Administrative Databases: A Systematic Review , 2015, PloS one.

[21]  Joe Schindler,et al.  Enhancing Clinical Content and Race/Ethnicity Data in Statewide Hospital Administrative Databases: Obstacles Encountered, Strategies Adopted, and Lessons Learned. , 2015, Health services research.

[22]  C. Anderson,et al.  Readmissions after stroke: linked data from the Australian Stroke Clinical Registry and hospital databases , 2015, The Medical journal of Australia.

[23]  P. Langhorne,et al.  Implementing a Simple Care Bundle Is Associated With Improved Outcomes in a National Cohort of Patients With Ischemic Stroke , 2015, Stroke.

[24]  A. Gilbert,et al.  Use of secondary stroke prevention medicines in Australia: national trends, 2003‐2009 , 2014, The Medical journal of Australia.

[25]  R Bellazzi,et al.  Big Data and Biomedical Informatics: A Challenging Opportunity , 2014, Yearbook of Medical Informatics.

[26]  Michelle B. Leavy,et al.  Technical, Legal, and Analytic Considerations for Combining Registry Data With Other Data Sources , 2014 .

[27]  Sean M. Randall,et al.  The effect of data cleaning on record linkage quality , 2013, BMC Medical Informatics and Decision Making.

[28]  S. Wooding,et al.  The answer is 17 years, what is the question: understanding time lags in translational research , 2011, Journal of the Royal Society of Medicine.

[29]  F. Silver,et al.  The Registry of Canadian Stroke Network : an evolving methodology. , 2011, Acta neurologica Taiwanica.

[30]  T. Vos,et al.  Burden of Stroke in Indigenous Western Australians: A Study Using Data Linkage , 2011, Stroke.

[31]  B. Norrving,et al.  The Riks-Stroke Story: Building a Sustainable National Register for Quality Assessment of Stroke Care , 2011, International journal of stroke : official journal of the International Stroke Society.

[32]  Ian Scott,et al.  Data Linkage: A powerful research tool with potential problems , 2010, BMC health services research.

[33]  P. Heuschmann,et al.  Protocol and Methodology of the Stroke in Young Fabry Patients (sifap1) Study: A Prospective Multicenter European Study of 5,024 Young Stroke Patients Aged 18–55 Years , 2010, Cerebrovascular Diseases.

[34]  M. Kaste,et al.  Stroke Monitoring on a National Level: PERFECT Stroke, a Comprehensive, Registry-Linkage Stroke Database in Finland , 2010, Stroke.

[35]  K. Devers,et al.  Health services research and data linkages: issues, methods, and directions for the future. , 2010, Health services research.

[36]  N. Dreyer,et al.  Registries for Evaluating Patient Outcomes: A User’s Guide , 2010 .

[37]  J. Semmens,et al.  Letters to the Editor , 2010 .

[38]  J. Semmens,et al.  Effect of clearance periods on hospital stroke incidence using linked administrative data. , 2010, International journal of stroke : official journal of the International Stroke Society.

[39]  R. Ádány,et al.  Population-based register of stroke: manual of operations , 2007, European journal of cardiovascular prevention and rehabilitation : official journal of the European Society of Cardiology, Working Groups on Epidemiology & Prevention and Cardiac Rehabilitation and Exercise Physiology.

[40]  E. Seiber Physician Code Creep: Evidence in Medicaid and State Employee Health Insurance Billing , 2007, Health care financing review.

[41]  M. Delgado-Rodríguez,et al.  Bias , 2004, Journal of Epidemiology and Community Health.