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From Patient Encounter to European Registry


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A software project for the European Cystic Fibrosis Society delivered by OpenApp in Open Source Software

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From Patient Encounter to European Registry

  1. 1. EHI Live Birmingham NEC 6th Nov 2013 From Patient Assessment to European Registry European Cystic Fibrosis Experience Mel McIntyre EHI Live 6th Nov 2013
  2. 2. About OpenApp •Software development and support focused on healthcare, patient assessments, quality assurance, spatial analysis and planning. •Deliver solutions on Open Source technologies, Python, Postgresql, Linux, Django, Zope. •Cloud delivered Patient Assessment Platform for Clinical Programs •Teaming with IBM and DSS Inc Florida USA to bring VistA to Europe EHI Live 6th Nov 2013
  3. 3. European Cystic Fibrosis Patient Registry - ECFSPR The ECFS Patient Registry’s aim is to measure, survey and compare aspects of cystic fibrosis and its treatment in the participating countries, •encouraging new standards of dealing with the disease, •providing data for epidemiological research •identifying special patient groups suitable for multi-centre trials. EHI Live 6th Nov 2013
  4. 4. 23 countries - approx 220 hospitals/cf centres EHI Live 6th Nov 2013
  5. 5. Goals for the software •Make it easy for countries and centres to participate oAccomodate countries with existing CF Registry software and countries and centres with no existing software oAccomodate countries with strict data protection interpretations oAllow countries and centres to extend the core data model to collect ‘more’ data and transfer or share data oNo barriers to participation - low or no costs •Make it easy for doctors/providers to participate oProvide feedback on patient and centre preformance oEasy as possible for doctors to complete patient assessments oAccurate summary process oExtend towards a richer encounter - labs, meds, other 1. EHI Live 6th Nov 2013
  6. 6. OpenApp goals •Build a platform that can serve more clinical programmes oCurrently building Irish National Joint Registry and one other Clinical Program •Integrate easily with external systems - PAS, Lab, Surgery, et al •Underpin with clinical data models (OpenEHR, EN 13606) and Clinical Tems and Ternilologies (SnomedCT, ICD, ATC, ) EHI Live 6th Nov 2013
  7. 7. Three types of Registry Participants Use European System Centres and/or Countries who will use the ECFSPR software system to generate the Patient Annual Summary record and submit to the European Registry Database Use Own Centres and/or Countries who have their own System means of developing the Annual Summary submission and will submit a file once per year to be included in the European Registry Database Own instance Austria Bulgaria Greece Israel Latvia Portugal Serbia Spain Slovenia Switzerland Belgium Czech Republic Denmark France Germany Italy Hungary Moldova Russia Slovakia Sweden UK Centres and/or countries who will manage their own instance/server of Europe running the ECFSPR software and will System submit a file once per year to be included in the European Registry Database EHI Live 6th Nov 2013 Ireland Holland
  8. 8. Software system components Core Data C • Registration • Demo graphics • Diagnosis • Duplicate and sharing mgmt Patient Identifcation File accessible only from within the Centre network Patient Identification Name, DOB, Other Patient Centre Id Encounter Data Entry En • Data Entry • L1 - Field validation • Patient Identification • Offline data collection and synchronisation • Centre specific styling • Centre level reporting Annual Summary Process AS • Each Centre has it’s own data tables • Each country has it’s own database • Data import or Excel upload • Level 1 and 2 validation • Error highlighting and correction • Error over-rides • Add country specific field additions • Country level reporting EHI Live 6th Nov 2013 Annual Return AR Verification • Download Country and/or Centre returns • Upload error reports for Centre attention • Mark data as complete Patient Id Consent management User Management Network and Application Security European Registry Database • Fixed reports • Reporting tools and charts • Data Export • Mutation management • Other tables
  9. 9. Software deployment . . with error reporting ECFSTracker Partition within European System Austria, Slovenia, Greece . . . Core Encounter C Data Entry En Data Own System UK, Germany, France . . Annual Return Centre Country Annual ASSummary AR Process ETL Spain UK Holland AR Own copy of ECFSTracker Software Ireland Core Data C Encounter Data Entry En Annual Summary Process AS EHI Live 6th Nov 2013 Annual Return AR Verification European Registry Database
  10. 10. Data protection . . 1.Patient identification only in Centre/Hospital o Label encryption process under control of the hospital 2.Only de-identified data managed in ECFS Registry EHI Live 6th Nov 2013
  11. 11. Patient Identification Hospital - Centre Country Registry European Registry Hospital MRN File accessible only from within the Centre network Patient Identification Name, DOB, Other Patient Centre Id Centre Patient Id Name Date of Birth HASH - Name/DOB National Reg Id National Reg Id National Centre Id National Centre Id National Reg Id European Reg Id European Reg Id European Country or Centre Id European Country or Centre Id EHI Live 6th Nov 2013
  12. 12. Patient Identification - two methods We use a Labels File to associate the patients real name with the CFRI Identifier 1.Hospital hosts the Labels File on a web server only accessible from within the hospital network and only accessed by the CF application 2.CFRIReg or ECFSTracker hosts the Encrypted Labels File and only the hospital can retrieve and decrypt with a hospital controlled password. EHI Live 6th Nov 2013
  13. 13. Extending the Data Collected - Adding fields at Country level . . . •Locally defined fields can be added to the Annual Summary at Country level and reflected in the Centre’s Encounter Data Collection Form •Fields are not mandatory at Centre level - you don’t have to use them •Visibility of fields and form layout can be customised at Centre level EHI Live 6th Nov 2013
  14. 14. Form Designer EHI Live 6th Nov 2013
  15. 15. Share or transfer patient record EHI Live 6th Nov 2013
  16. 16. Data Quality Control - Spec Level 1: data control through input masks and validation rules at input level. This is to prevent a user to put in really faulty data e.g. FEV 15 litre; validation rules, e.g. FEV1 <= FVC or e.g. a user fills in: sterile or normal flora in sputum, then the pseudomonas and other should become grey and impossible to choose; Level 2: automatic data control of the whole set before saving. A user should have the possibility to input partial data, after leaving the internet it should be possible to continue the same patient later. Once a patient is complete, the user clicks the button ¡§make this registration complete¡¨. From that moment on, there should be a control of missing values, incompatible combinations of data, data coherence etc. to give the user the possibility to correct the errors. Summarising: • • • • • Automatic data-coding control; Automatic control of miscalculations; Automatic control of missing values or values outside the allowed range; Automatic control double entries, e.g. records that are doubled by mistake; Automatic data-coherence controls (according to a list that will be provided). Level 3: once everything is in order, data are admitted to the general working database where level 3 validation is done (many of these items will be done manually by statisticians). EHI Live 6th Nov 2013
  17. 17. Error reporting from Level 3 Validation (Statistician) . . . •Set of tools for use by CF Registry Statistician •Based on Annual Return of Annual Summaries on a Centre or Country basis •All Centre or Country data available to download •Upload of Error Reports by Statistician •Errors are posted back to appropriate Centre and specific fields highlighted for correction •Error over-ride available EHI Live 6th Nov 2013
  18. 18. Error Reporting Module - Spec • Prevents the user from entering/modifying the data when the procedure is started; • The user should receive notification of the errors present in their database; • Each error should be accompanied by a short explanation of the nature of the error; • The user should be automatically directed to the page where the errors are present; • The wrong values should be clearly evident (either by highlighting the field or by writing it in a different colour; • All the fields that do not need correction should be blocked (i.e. the user should not be allowed to modify them); • After the errors have been corrected, the software should re-carry out all the usual and agreed data-quality controls; • If the correction of one error generates another error in the database, then the software should notify the user and the user should be directed to the page where the new error is found, the user should be allowed to modify the relevant fields EHI Live 6th Nov 2013
  19. 19. Reporting • Europe, Country, Centre • Patient level reports EHI Live 6th Nov 2013
  20. 20. Reporting . . Data protection • Same reporting facilities available at Centre, Country, Europe • Reporting permissions o USER and Centre Administrator at Centre only o Country Coordinator ALL CENTRES in that Country o European Coordinator can see all Centres and Countries • PIVOT Table for Ad-Hoc reports o What variables to expose - still under discussion o Counts and Proportions (Yes/Total Records) as report type • Fixed Reports for Centre • Fixed Reports for Patient EHI Live 6th Nov 2013
  21. 21. Europe, Country, Centre - as available EHI Live 6th Nov 2013
  22. 22. Patient encounter and reports EHI Live 6th Nov 2013
  23. 23. Patient encounter and reports EHI Live 6th Nov 2013
  24. 24. Planned for Irish CFR - Shared Enhanced Encounter Mgt John Doe DOB 12 Oct 1997 CFRI Id - 12345 12 Main St, Athy, Co Kildare Patient Summary • Some indicators • Complications • Patient report Hospital Data • Lab test results • Inpatient encounters Medications • Current • History Patient Schedule • Clinic dates (assessments) • Other Key Clinical Indicators Patient reports • • • • • Hospital MRN Next of Kin Referring GP etc Treating Consultant Other provider Data input Visualisation EHI Live 6th Nov 2013
  25. 25. Technologies used 1. PostgreSQL database 2. Django wep app framework 3. Indivo PCHR - we used the Indivo design pattern but have removed the code as we use more Provider than Patient control 4. Lots of Javascript - D3, Flot, JQuery
  26. 26. Thanks