Clinical Data acquisition and management. David A. Dorr, MD, MS Data after Dark 1/2016 OHSU
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1 Clinical Data acquisition and management David A. Dorr, MD, MS Data after Dark 1/2016 OHSU
2 Clinical data: Four major points (revisited) Point Clinical data has potential to transform research across the translational continuum Clinical data is available, here at OHSU and elsewhere Clinical data is incomplete, inaccurate, and messy You can be part of the solution by sharing data, recording metadata, and being responsible Example Multiple opportunities to transform knowledge discovery and generate value Chief Clinical Research Informatics Officer; OCTRI Research data warehouse; RedCAP; EHR Computable phenotype variation (duke); EHR data source variation Up to you just do it!
3 Clinical Data across the ecosystem
4 Clinical data is available, here at OHSU and elsewhere Current OCTRI Data management (links provided) E.g., Epic Data for research ACC Cloud: Resource Identification Initiative; NIH; many other sources Leading towards the future * Tim Burdick, Chief Clinical Research Informatics Officer
5
6 How much data are in the RDW? Epic Ambulatory since 2005 Epic Inpatient and ED since May 2008 >2.7 million patients >600,000 patients with at least 1 visit >10.3 million visits Epic data is complex! Clarity contains over 8,700 data tables and over 75,000 data elements Cohort Discovery Tool
7 What data are available? Demographic information gender, race, ethnicity, preferred language, employment status Provider, insurance coverage Birth history date of birth, gestation, birth weight Vitals blood pressure, weight, height, pain ratings Contact and census information Addresses, phone, census information Lab orders and results Diagnoses, problem lists, medical history (ICD 9*) Hospital encounter information Medication lists and orders Ambulatory encounter information clinic date, provider, department/clinic, PCP, chief complaint, cancel reason Procedures Surgeries Insurance coverage for patient encounter benefit plan, insurance class, co pay * ICD 10 coming soon!
8 Accessing the RDW Data can be released to investigators in three ways Counts no IRB required. De identified IRB determination of nonhuman subjects research Fully identifiable requires IRB approval
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10 OHSU MyChart for Recruitment pilot Dennis McCarty (PI) Public Health; 1 clinic, 2 MDs Dept Medicine Enrollment by sex MyChart msg sent (n) MyChart msg read (%) REDCap survey completed (%) Patients who opted out from MyChart for research (n) Females % 36% 0 Males % 28% 0 Both % 32% 0 - Patients read MyChart messages identified as research. - Patients see MyChart as a reasonable channel for conducting research. - MyChart is a viable method for recruiting for a clinical research survey. Slide from Tim Burdick; Help from OCTRI (NCATS UL1TR000128); ITG Epic Research Team; OHSU Office of Clinical Research Informatics
11 Cloud resources 1. You read an article, are interested in expanding or reproducing its results, and want to know how 1. Resource Identification Initiative in progress 2. Clinical data study request 2. You have a novel idea that needs certain clinical data 1. Federal sources, e.g., 2. Collaboratives, like emerge or PCORnet
12 29 partner networks (including one lead by OCHIN named ADVANCE) 60 million covered lives
13 Clinical data is incomplete, inaccurate, and messy Duke PCORNet EHR data extraction to diagnose diabetes 3536 (14.4%) only diagnosis codes 1129 (4.6%) only medications 4203 (17.1%) only labs
14 EHR data is messy : Gold standard for diagnosis Sensitivity Specificity PPV NPV Problem List Encounters Medical History Rule Check Combined (All) Source: Martin, Dorr et al. unpublished data
15 Does this messiness matter? Outcome / Risk score EHR data Source Cost > 20k Encounter Med History Problem List Combined Gold Standard ACA ALL Mod. Charlson HCC Mean Source: Martin, Dorr et al. unpublished data
16 Being Part of the Solution Use standards Computable phenotypes (don t just make up your own stuff) Record metadata about your data, your processing, your analysis Manage your data carefully get professional help Validate your approach Test against known standards, measure a subset in two different ways, etc. Share all you can your data, your approach
17 Links research services/data consult.cfm research services/rdw.cfm research services/cohort discovery.cfm Phenotype Adventures PCORnet BPSS pdf data research networks/cdrn10 oregon community health information network ochin/
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