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Databases and Coding Validation Working Group Meeting

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Meeting of Respiratory Effectiveness Group Databases and Coding Validation Working Group Meeting held in London during the ERS 2016 Congress

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Databases and Coding Validation Working Group Meeting

  1. 1. DATABASES & CODING VALIDATION WORKING GROUP MEETING DATE: Saturday September 3rd TIME: 9.30–10.30am VENUE: Royal College of General Practitioners; 30 Euston Square, London, UK Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes (TORPEDO)
  2. 2. Agenda •  TOWARDS OPTIMUM REPORTING OF PULMONARY EFFECTIVENESS DATABASES AND OUTCOMES (TORPEDO) •  INVENTORY OF DATABASES •  CODE SHARING
  3. 3. Background •  “We performed an epidemiological study with data obtained from the Information System for the Development in Research in Primary Care (SIDIAP), a population database that contains information of 5.8 million inhabitants (80% of the population of Catalo •  “Data for this study was obtained from the PHARMO Database Network, which includes drug dispensing records from pharmacies, hospitalization records and information from general practitioners.” •  “Patients identified from the Optimum Patient Care Research Database (OPCRD) with a diagnostic code for COPD and a forced expiratory volume in 1 second/forced vital capacity ratio <0.7 were included in this historical follow-up study”
  4. 4. Background •  Increasing need, called for by researchers, editors, industry and regulators, for a validated tool that enables: -  characterization -  validation -  cross-comparison of respiratory databases around the world àRespiratory data standardizing & merging
  5. 5. Example: CHEERS
  6. 6. CHEERS methods •  Request of medical editors •  Identification of previous checklists (review) •  List of possible items (44) •  Two-round Delphi panel (academia, clinicians, government, industry, editors) to identify minimum set of variables and accompanying recommendations (24) •  Specific recommendations for specific studies
  7. 7. No funding yet but...get ready for the launch of TORPEDO
  8. 8. WHAT IS THE IDEAL RESPIRATORY DATABASE? TOWARDS OPTIMUM REPORTING OF PULMONARY EFFECTIVENESS DATABASES AND OUTCOMES (TORPEDO)
  9. 9. Concept / Principle •  REG advocates for high quality real-life research •  REG has a role to play in: o  Providing tools to identify quality in both research and research tools (including databases) o  Offering guidance to – Researchers with less experience of real-world research methods and tools – Countries (or regions) keen to establish clinical databases that may have potential utility for research in the future •  REG will provide a “checklist” outlining the maximal and minimal variables required to conduct real-life respiratory research.
  10. 10. Working Group Meeting Rotterdam 2015: Checklist for an “ideal” database (I) Database Category Type of database Electronic Medical Record Claims Disease registry Other (eg cohort studies) Country / countries of data origin Number of patients Start of data collection (date) Data updates Unique identifier / anonymisation Family history / links Ethical approval for sharing Review board for protocol approval Death and cause of death documented? Ability to link dataset Coding system ICD-10 Read ATC Other Exposures Prescribed Dispensed Prescribed & dispensed Indication of use Drug Dose / dosing Device OTC medications Inhaler technique Adherence Action Plan Self-management plan
  11. 11. Working Group Meeting Rotterdam 2015: Checklist for an “ideal” database (II) Database Category Outcomes Exacerbations Treatment-based Steroids Antibiotics SABA O2 usage Health Resource Utilisation Primary Care Consultations Secondary care consultations Consultations coded by disease Consultations coded by routine/emergency Hospitalisations Hospitalisations coded by disease Hospitalisations duration Emergency room ICU ICU coded by disease ICU duration Rehab Rehab coded by disease Rehab coded by duration Physiotherapy Physiotherapy coded by disease Physiotherapy duration Patient-reported MRC Asthma control measure (ACQ, ACT) CAT CCQ Nasal Hyper-Reactivity Bronchial Hyper-Reactivity Nasal Symptoms Sputum Colour RCP3 Sick days
  12. 12. Working Group Meeting Rotterdam 2015: Checklist for an “ideal” database (III) Database Category Covariates Spirometry FEV1 FVC FEV1/FVC Reversibility (%, or ml) Demographics Age Gender Height Weight BMI Comorbidities Diabetes Heart Disease Rhinitis Osteoporosis Nasal Polyps Depression / Anxiety Reflux (GERD) CKD Lung Cancer Anaemia Cognitive Dysfunction Lifestyle Smoking status Audio Assessment Lung crackles / velco Vaccination history Socioeconomic status Post code / area code Education level Employment status Salary range Laboratory tests (+ units) Full blood count with differentiation (for eosinophils) Creatinine CRP FeNO IgE (total, specific) Skin prick test DPPIV Serum periostin Vitamin D Neutrophils O2 saturation Imaging CRX HRCT
  13. 13. Formalise the process: the TORPEDO checklist proposal (I) Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes: checklist •  Aims: 1.  Development of a checklist with: 1.  Optimum/ideal and 2.  Minimum required Variables for respiratory research 2.  Develop a repository of respiratory databases in which each database is characterised against this new checklist •  Project leads: o  Job van Boven: University of Groningen, The Netherlands o  Jonathan Campbell: Skaggs School of Pharmacy, Denver
  14. 14. TORPEDO checklist proposal (II) Aim 1: Checklist development:* •  Develop a draft checklist through systematic search: o  For existing tools to report the characteristics of respiratory databases. o  In parallel – create a list of current databases and available parameters. •  Develop minimum/maximum checklists via a Delphi procedure: o  A Delphi panel involving: editors, governmental decision makers, healthcare professionals, academia, industry, guideline and respiratory association representatives, from a broad geographical area. o  Delphi methodology (and use of Likert scales with cut-offs) will be used to establish a set of minimum and optimum parameters. •  Recommendations o  Delphi panellists review the final list and provide recommendations for use and implementation. o  Results and recommendations will be summarized in a manuscript that will be submitted to some selected medical and health outcomes journals. *Methods similar to those applied in the development of the CHEERS-statement for health economic reporting (Husereau D, et al, CHEERS Task Force: Consolidated Health Economic Evaluation Reporting Standards (CHEERS) statement. BMJ 2013; 346: f1049.
  15. 15. TORPEDO proposal – Delphi Panelists Potential participants: •  Editors (AJCCRM, Thorax, ERJ, Chest, PCRM, JACI, Value in Health, etc) •  Governmental/Health authority/insurance decision makers (NICE etc) •  Guidelines representatives (GOLD, GINA) •  Association representatives (ATS, ERS, APPS, EACCI, IPCRG) •  Pharmaceutical industry Academia (respiratory medicine, epidemiologist, health economist) •  Healthcare professionals (pulmonologist, allergist, paediatrician, GP, pharmacist, nurse, physiotherapist) •  Total panel aim: +/- 30 members
  16. 16. Delphi Panel Methodology •  ≥10 panel members must reply •  ≥1 panel member from: o  Each discipline: –  Asthma, COPD, ILD, Allergy, Child Health, Health Economics, Primary Care, Databases o  Each continent o  A Society o  A Guideline Group
  17. 17. Potential Panelists (identified June 2015) Topic Name Continent Other Allergy Nikos Papadopoulos Europe EAACI Allergy Walter Canonica Europe WAO Allergy Pete Smith Oceania Asthma Emilio Pizzichini S-America Asthma Gary Wong Asia Editor NEJM Asthma Helen Reddel Oceania GINA Asthma Jerry Krishnan N-America AJCCRM editor Asthma Mark Fitzgerald N-America GINA Asthma Michael Schatz N-America Editor JACI in P Child health Wim van Aalderen Europe Child health Steve Turner Europe COPD Bruce Kirenga Africa Director Makerere Lung Institute COPD Chin Kook Rhee Asia HIRA expert COPD Guy Brusselle Europe ERS research agency COPD Joan Soriano Europe ERJ editor COPD Marc Miravitlles Europe SIDIAP database, COPD editor COPD Nicholas Roche Europe GOLD Databases Katia Verhamme Europe WG lead Health economics Jon Campbell N-America ISPOR ILD/IPF Alan Kaplan N-America ILD/IPF Andrew Wilson Europe ILD/IPF Ian Glaspole Oceania ILD/IPF Luca Richeldi Europe ERJ editor ILD/IPF Toby Maher Europe Primary care Niels Chavannes Europe Editor PCRM/ UNLOCK Primary care David Price Europe RIRL/OPRI/Editor J Thor Dis Primary care Dermot Ryan Europe OPC Databases Eric van Ganse Europe Bridge to Data Databases Faisal Yunus Asia Databases Jennifer Quint Europe Editor Thorax Databases/health economics Job van Boven Europe Dutch FDA Databases Miguel Roman-Rodriguez Europe MAJORICA Primary care Thys van der Molen Europe IPCRG/PRO
  18. 18. Online Delphi Tool •  Qualtrics online survey tool in development: https:// respiratoryeffecti ve.co1.qualtrics.c om/SE/? SID=SV_4Sz9cO sLfmgbAfr
  19. 19. Panel Member Details
  20. 20. If you DO NOT THINK a stated variable has poten:al importance for respiratory research, please indicate by checking the box. If you think the variable IS poten3ally valuable, there is no need to do anything Lifestyle & Demographics Example of TORPEDO Delphi Survey Page
  21. 21. Lung function Example of TORPEDO Delphi Survey Page
  22. 22. The CDM is organized into domains CONDITION A condition represents a patient’s diagnosed and self- reported health conditions and diseases. The patient’s medical history and current state may both be represented. DEATH Reported mortality information for patients. DEATH_CAUSE The individual causes associated with a reported death. DEMOGRAPHIC Demographics record the direct attributes of individual patients. DIAGNOSIS Diagnosis codes indicate the results of diagnostic processes and medical coding within healthcare delivery. DISPENSING Outpatient pharmacy dispensing, such as prescriptions filled through a neighborhood pharmacy with a claim paid by an insurer. Outpatient dispensing is not commonly captured within healthcare systems. ENROLLMENT Enrollment is a concept that defines a period of time during which all medically-attended events are expected to be observed. This concept is often insurance-based, but other methods of defining enrollment are possible. ENCOUNTER Encounters are interactions between patients and providers within the context of healthcare delivery. HARVEST Attributes associated with the specific PCORnet datamart implementation LAB_RESULT_CM Laboratory result Common Measures (CM) use specific types of quantitative and qualitative measurements from blood and other body specimens. These standardized measures are defined in the same way across all PCORnet networks. ENROLLMENT Enrollment is a concept that defines a period of time during which all medically-attended events are expected to be observed. This concept is often insurance-based, but other methods of defining enrollment are possible. ENCOUNTER Encounters are interactions between patients and providers within the context of healthcare delivery. HARVEST Attributes associated with the specific PCORnet datamart implementation LAB_RESULT_CM Laboratory result Common Measures (CM) use specific types of quantitative and qualitative measurements from blood and other body specimens. These standardized measures are defined in the same way across all PCORnet networks. PCORNET_TRIAL Patients who are enrolled in PCORnet clinical trials. PRESCRIBING Provider orders for medication dispensing and/or administration. PRO_CM Patient-Reported Outcome (PRO) Common Measures (CM) are standardized measures that are defined in the same way across all PCORnet networks. Each measure is recorded at the individual item level: an individual question/statement, paired with its standardized response options. PROCEDURES Procedure codes indicate the discreet medical interventions and diagnostic testing, such as surgical procedures, administered within healthcare delivery. VITAL Vital signs (such as height, weight, and blood pressure) directly measure an individual’s current state of attributes. PCORNET_TRIAL Patients who are enrolled in PCORnet clinical trials. PRESCRIBING Provider orders for medication dispensing and/or administration. PRO_CM Patient-Reported Outcome (PRO) Common Measures (CM) are standardized measures that are defined in the same way across all PCORnet networks. Each measure is recorded at the individual item level: an individual question/statement, paired with its standardized response options. PROCEDURES Procedure codes indicate the discreet medical interventions and diagnostic testing, such as surgical procedures, administered within healthcare delivery. VITAL Vital signs (such as height, weight, and blood pressure) directly measure an individual’s current state of attributes. v1.0 v2.0 v3.0 v3.0 v3.0 v3.0 v3.0 v1.0 v1.0 v2.0 v1.0 v2.0 v1.0 v1.0 v2.0 Cross-reference other work…?
  23. 23. Process-related dataData captured from healthcare delivery, direct encounter basis Data captured from processes associated with healthcare delivery Data captured within multiple contexts: healthcare delivery, registry activity, or directly from patients Fundamental basis PATID BIRTH_DATE BIRTH_TIME SEX HISPANIC RACE BIOBANK_FLAG DEMOGRAPHIC PATID ENR_START_DATE ENR_END_DATE CHART ENR_BASIS ENROLLMENT ENCOUNTERID PATID ADMIT_DATE ADMIT_TIME DISCHARGE_DATE DISCHARGE_TIME PROVIDERID FACILITY_LOCATION ENC_TYPE FACILITYID DISCHARGE_DISPOSITION DISCHARGE_STATUS DRG DRG_TYPE ADMITTING_SOURCE ENCOUNTERVITALID PATID ENCOUNTERID (optional) MEASURE_DATE MEASURE_TIME VITAL_SOURCE HT WT DIASTOLIC SYSTOLIC ORIGINAL_BMI BP_POSITION SMOKING TOBACCO TOBACCO_TYPE VITAL DIAGNOSISID PATID ENCOUNTERID ENC_TYPE (replicated) ADMIT_DATE (replicated) PROVIDERID (replicated) DX DX_TYPE DX_SOURCE PDX DIAGNOSIS PROCEDURESID PATID ENCOUNTERID ENC_TYPE (replicated) ADMIT_DATE (replicated) PROVIDERID (replicated) PX_DATE PX PX_TYPE PX_SOURCE PROCEDURES DISPENSINGID PATID PRESCRIBINGID (optional) DISPENSE_DATE NDC DISPENSE_SUP DISPENSE_AMT DISPENSING LAB_RESULT_CM_ID PATID ENCOUNTERID (optional) LAB_NAME SPECIMEN_SOURCE LAB_LOINC PRIORITY RESULT_LOC LAB_PX LAB_PX_TYPE LAB_ORDER_DATE SPECIMEN_DATE SPECIMEN_TIME RESULT_DATE RESULT_TIME RESULT_QUAL RESULT_NUM RESULT_MODIFIER RESULT_UNIT NORM_RANGE_LOW NORM_MODIFIER_LOW NORM_RANGE_HIGH NORM_MODIFIER_HIGH ABN_IND LAB_RESULT_CM CONDITIONID PATID ENCOUNTERID (optional) REPORT_DATE RESOLVE_DATE ONSET_DATE CONDITION_STATUS CONDITION CONDITION_TYPE CONDITION_SOURCE CONDITION PRO_CM_ID PATID ENCOUNTERID (optional) PRO_ITEM PRO_LOINC PRO_DATE PRO_TIME PRO_RESPONSE PRO_METHOD PRO_MODE PRO_CAT PRO_CM PCORnet Common Data Model v3.0 PRESCRIBINGID PATID ENCOUNTERID (optional) RX_PROVIDERID RX_ORDER_DATE RX_ORDER_TIME RX_START_DATE RX_END_DATE RX_QUANTITY RX_REFILLS RX_DAYS_SUPPLY RX_FREQUENCY RX_BASIS RXNORM_CUI PRESCRIBING Associations with PCORnet clinical trials PATID DEATH_DATE DEATH_DATE_IMPUTE DEATH_SOURCE DEATH_MATCH_CONFIDENCE DEATH PATID TRIALID PARTICIPANTID TRIAL_SITEID TRIAL_ENROLL_DATE TRIAL_END_DATE TRIAL_WITHDRAW_DATE TRIAL_INVITE_CODE PCORNET_TRIAL NETWORKID NETWORK_NAME DATAMARTID DATAMART_NAME DATAMART_PLATFORM CDM_VERSION DATAMART_CLAIMS DATAMART_EHR BIRTH_DATE_MGMT ENR_START_DATE_MGMT ENR_END_DATE_MGMT ADMIT_DATE_MGMT DISCHARGE_DATE_MGMT PX_DATE_MGMT RX_ORDER_DATE_MGMT RX_START_DATE_MGMT RX_END_DATE_MGMT DISPENSE_DATE_MGMT LAB_ORDER_DATE_MGMT SPECIMEN_DATE_MGMT RESULT_DATE_MGMT MEASURE_DATE_MGMT ONSET_DATE_MGMT REPORT_DATE_MGMT RESOLVE_DATE_MGMT PRO_DATE_MGMT REFRESH_DEMOGRAPHIC_DATE REFRESH_ENROLLMENT_DATE REFRESH_ENCOUNTER_DATE REFRESH_DIAGNOSIS_DATE REFRESH_PROCEDURES_DATE REFRESH_VITAL_DATE REFRESH_DISPENSING_DATE REFRESH_LAB_RESULT_CM_DATE REFRESH_CONDITION_DATE REFRESH_PRO_CM_DATE REFRESH_PRESCRIBING_DATE REFRESH_PCORNET_TRIAL_DATE REFRESH_DEATH_DATE REFRESH_DEATH_CAUSE_DATE HARVEST PATID DEATH_CAUSE DEATH_CAUSE_CODE DEATH_CAUSE_TYPE DEATH_CAUSE_SOURCE DEATH_CAUSE_CONFIDENCE DEATH_CAUSE Bold font indicates fields that cannot be null due to primary key definitions or record-level constraints.http://www.pcornet.org/pcornet-common-data-model/ ICD-9/10 codes
  24. 24. TORPEDO proposal: Aim 2 Aim 2: Database repository •  Collecting databases o  Elicit databases and characteristics from: –  REG members –  Through literature search –  Through Bridge to Data, ENCePP search engines •  Applying the checklist o  Collaborators will complete the checklist on these databases and will present the overview on a web-based REG/UNLOCK platform.
  25. 25. OPTIMISE THE REG WEBSITE LINKS CODE SHARING
  26. 26. New REG Website •  Launched June 2016 •  Webpage for each group o  Key links o  Upcoming meetings o  Information sharing o  File sharing, e.g. code sharing Main site: www.effectivenessevaluation.org
  27. 27. Working Group Page Features: •  WG meetings •  Members •  Useful links: o  Bridge-to-Data o  ENCePP –  Database registry (not uniquely respiratory) –  Quality “EnCePP Seal” o  Code Mapper o  ClincialCodes •  Code sharing feature •  Customise further? http://effectivenessevaluation.org/working-groups-committees/databases-coding-working-group/
  28. 28. File (Code list) sharing feature
  29. 29. File (Code list) sharing feature You’ll see the Working Group sites you have access to (i.e. that you’re a member of) down the side Click on the working group name to access any files shared among working group members.
  30. 30. File (Code list) sharing feature Click on the filename to Download the file Click on the New Folder to create a new folder within the share space Click Upload to upload a file to share with the group
  31. 31. File (Code list) sharing feature To customize your space, go to your account – top right hand corner Click on “My Account” and you then have the option to reset your password, opt in for notifications when others upload files, etc.

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