Project title: Electronic Health Indicator Data (eHID) Project number: 2003129 Contract number: 2003129 Programme: Public Health and Risk Assessment, Health and Consumer Protection. Strand I: Health Information Priority 2.2.5: eHealth Directorate General SANCO European Commission LEAD AUTHORS: Douglas M Fleming, project leader1 Catherine Elliott, project facilitator2 Michael Pringle, scientific officer2 1Royal College of General Practitioners, Birmingham 2Division of Primary Care, University of Nottingham On behalf of the Project Group: John Sahl Andersen, University of Copenhagen Isabel Falcao, Public Health Institute, Portugal Gilles Hebbrecht, French Society of General Practice (SFMG) Roberto Nardi, European School of General Practice, Italy (SIMG) Valeria Pacheco, XIIAP Jordi Gol Institute, Spain Viviane Van Casteren, Scientific Institute of Public Health, Belgium Robert Verheij, The Netherlands Institute for Health Services Research (NIVEL) and Jean K Soler, Transhis Network, Malta Stefaan Bartholomeeusen, Catholic University of Leuven and Intego Network, Flanders Helen Boardman2, project facilitator Feb 2005-Oct 2005 Didier Duhot, French Society of General Practice (SFMG) Henrik Schroll, DAK-E Network, University of Southern Denmark Jouke van der Zee, The Netherlands Institute for Health Services Research (NIVEL) Project Monitor: Jose Marinho Falcao, Public Health Institute, Portugal Date: 9th April 2008 TABLE OF CONTENTS EXECUTIVE SUMMARY............................................................................... 4 Chapter 1: INTRODUCTION ...................................................................... 10 Background ......................................................................................................... 10 Computer use in primary care.......................................................................... 12 Project Aims ........................................................................................................ 15 Choice of Indicator diseases ............................................................................ 16 Chapter 2: PARTNERS, MATERIAL, METHODS AND WORK PLAN ....... 18 Project Partners.................................................................................................. 18 Material ................................................................................................................ 19 Site visits.......................................................................................................... 19 Statistical data from the networks................................................................ 20 Chapter 3: SITE VISITS ............................................................................. 22 Introduction.......................................................................................................... 22 Method ................................................................................................................. 22 Commentary on visits to network leaders ...................................................... 22 Brief description of networks ........................................................................ 23 Network Structures......................................................................................... 24 Ethical considerations.................................................................................... 24 Recruitment of GPs to the networks ........................................................... 25 Data recording and collection....................................................................... 26 Data Entry: menu driven software.............................................................. 27 Prevalence, incidence and episode typing................................................. 27 Data quality measures................................................................................... 29 Training, feedback and input of GPs........................................................... 31 Network organisation opinions of strengths and weaknesses in the systems............................................................................................................ 31 Findings from visits to participating GPs ........................................................ 32 Recording in GP computer systems............................................................ 32 Recording for eHID indicator conditions..................................................... 35 GPs opinions of strengths and weaknesses in the systems ................... 35 The growth of practice information networks................................................. 36 Chapter 4: ANALYSIS OF HEALTH INDICATOR DISEASES ................... 38 Introduction.......................................................................................................... 38 Prevalence of diabetes...................................................................................... 42 Comments on results for diabetes................................................................... 44 Incidence of Ischaemic Heart Disease ........................................................... 45 Prevalence of Ischaemic Heart Disease ........................................................ 47 Comments on results for ischaemic heart disease....................................... 48 2 Prevalence of doctor assessed mental illness .............................................. 49 Prevalence of dementia .................................................................................... 50 Prevalence of schizophrenia ............................................................................ 52 Prevalence of affective psychoses.................................................................. 53 Comments on results for mental illnesses ..................................................... 54 Perception of mental illness.......................................................................... 54 The recording process................................................................................... 55 Source of care................................................................................................. 55 Concern about the record content............................................................... 55 Gender differences ............................................................................................ 56 Overall discussion of the results...................................................................... 57 Chapter 5: CRITICAL ISSUES FOR EPIDEMIOLOGICAL INVESTIGATION .................................................................................................................... 58 Denominator issues ........................................................................................... 58 Diagnostic definition........................................................................................... 64 Disease Classification ....................................................................................... 67 The Dictionary of Consultation Results (DCR ........................................... 67 The International Classification of Disease................................................ 68 International Classification of Primary Care (ICPC) ................................. 69 The Primary-Secondary care interface........................................................... 70 Chapter 6: PRACTICE BASED NETWORKS............................................. 71 The role of sentinel practice networks ............................................................ 71 Network aims ...................................................................................................... 73 Representativeness of networks...................................................................... 74 Network organisation......................................................................................... 75 Network Recruitment Criteria ....................................................................... 76 Chapter 7: RECOMMENDATIONS .......................................................... 77 Computer software............................................................................................. 77 Recorder tasks.................................................................................................... 78 Confidentiality and Data Transfer Procedures .............................................. 79 Classification and Diagnosis Definition........................................................... 80 Denominator definition ...................................................................................... 81 Further developments........................................................................................ 82 REFERENCES............................................................................................ 83 Appendix 1: AGENDA POINTS AT eHID MEETINGS................................. 87 Appendix 2: REPORTS FROM THE eHID PROJECT MONITOR: José Marinho Falcão............................................................................................ 88 Appendix 3: PORTUGAL REPORT........................................................... 102 Appendix 4: DATA RETURNS FROM THE PARTICIPANT NETWORKS FOR 2004 AND 2005 ................................................................................ 104 ACKNOWLEDGEMENTS ......................................................................... 113 LIST OF ABBREVIATIONS....................................................................... 114 3 EXECUTIVE SUMMARY