Identification and evaluation of standardised datasets for measuring and monitoring access to health care Identification and evaluation of standardised datasets for measuring and monitoring access to health care Report for the National Co-ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO) August 2004, revised November 2005 Prepared by Alison Macfarlane Nicholas Drey Sylvia Godden Allyson Pollock Anita Sims Address for Correspondence Alison Macfarlane Professor of Perinatal Health Department of Midwifery St Bartholomew School of Nursing & Midwifery Institute of Health Sciences, City University 24 Chiswell St London EC1Y 4TY Email: [email protected] Telephone 020 7040 5832 © NCCSDO 2006 1 Identification and evaluation of standardised datasets for measuring and monitoring access to health care Contents Tables 6 Executive Summary Introduction 10 Aims and objectives 10 Methods 11 Results 12 Conclusions 14 Recommendations 14 The Report Section1 Introduction 16 1.1 Background 16 1.2 Aims and objectives 17 1.3 Scope 17 1.4 What are standardised datasets? 17 1.4.1 Routinely collected data 17 1.4.2 Standardised datasets 17 1.4.3 Central returns 18 1.4.4 Official statistics 18 Section 2 Methods ....................................................................19 2.1 Identification of routine datasets......................................... 19 2.1.1 Literature review ......................................................20 2.1.2 Survey of data collection requirements by personal letter..........................................................21 2.1.3 Contact with a range of data users and providers through consultation....................................21 2.2 Defining access to health care and developing a framework for access............................................................22 2.2.1 Definitions of access .................................................22 2.2.2 An operational definition of access ..............................25 2.2.3 Application of the framework to a range of data sources relevant to access to health care ..............27 2.2.4 Application of the framework to selected case studies .............................................................27 2.3 Monitoring changes during the project ................................. 27 Section 3 Health service data 29 3.1 Introduction 29 3.2 Hospital Episode Statistics and episode based inpatient data 29 3.2.1 Hospital Inpatient Enquiry (HIPE) and Hospital Activity Analysis (HAA) 30 3.2.2 Episode-based data: HES and the Admitted Patient Care Commissioning Dataset 33 3.2.3 Strengths and limitations of HES and hospital activity data collections for monitoring © NCCSDO 2006 2 Identification and evaluation of standardised datasets for measuring and monitoring access to health care access to health care 43 3.3 Aggregated health service activity data 46 3.3.1. Aggregated hospital data 46 3.3.2 Aggregated primary care data 49 3.3.3 NHS and local authority community datasets 56 3.3.4 Waiting times data 59 3.3.5 Staffing and workforce data 62 3.4 Communicable disease reporting 65 3.4.1 Data currently collected 66 3.4.2 Recent developments 71 3.4.3 Strengths and limitations of communicable disease data to measure access to health care 72 3.5 Access to health care and health service data 73 3.6 Discussion 78 Section 4 Population-based data 80 4.1 Introduction 80 4.2 Population-based censuses and continuous surveys 80 4.2.1 The Census of Population 82 4.2.2 The Health Survey for England 85 4.2.3 The General Household Survey 88 4.2.4 Other population surveys 90 4.2.5 Future developments in the population surveys 92 4.2.6 Strengths and limitations of survey data 93 4.3 Cancer registration 94 4.3.1 Summary of the strengths and limitations of cancer registration data to monitor and measure access 98 4.4 Registration and notification of vital events 98 4.4.1 Registration of births and deaths 99 4.4.2 Notification of congenital anomalies 105 4.4.3 Notification of abortions 105 4.4.4 Confidential enquiries 106 4.4.5 Access to health care in population-based registration and notification data 111 4.5 Discussion 119 Section 5 Consultation with data users 122 5.1 Conclusion 125 Section 6 Case studies 127 6.1 The mental health of older people 130 6.1.1 Introduction 130 6.1.2 Types of mental illness 131 6.1.3 Who provides services for older people with mental illness? 132 6.1.4 Policy issues for older people’s mental health services............................................. 134 6.1.5 Routine datasets relating to older people’s mental health 135 6.1.6 To what extent can existing data be used to measure and monitor access to older people’s mental health services 136 6.1.7 Application of the Framework for Access to data sources for the mental health of older people 137 © NCCSDO 2006 3 Identification and evaluation of standardised datasets for measuring and monitoring access to health care 6.2 Maternity and neonatal care 152 6.2.1 Introduction 152 6.2.2 Who provides maternity and neonatal care? 152 6.2.3 Policy issues relating to access to maternity and neonatal care 152 6.2.4 Routine datasets relating to maternity and neonatal health care 155 6.2.5 Adequacy of existing data sources for measuring and monitoring access to maternity and neonatal health care 155 6.3 Cancer 175 6.3.1 Introduction 175 6.3.2 Definition of cancer and its prevalence 175 6.3.3 Who provides cancer services? 176 6.3.4 Government targets and policies relating to cancer 177 6.3.5 Major policies of the last ten years 177 6.3.6 Routine datasets relating to cancer 180 6.3.7 Summary of the extent to which existing data sources can be used to measure and monitor access to cancer services 180 6.4 Coronary Heart Disease 185 6.4.1 Introduction 185 6.4.2 Policy issues relating to access to Coronary Heart Disease care 185 6.4.3 Routine datasets relating to Coronary Heart Disease health care 189 6.4.4 Adequacy of existing data for measuring and monitoring access to coronary heart disease care 190 6.4.5 Conclusions 192 6.5 Charging for NHS services 207 6.5.1 Introduction 209 6.5.2 The impact of NHS prescription charges on access to treatment 210 6.5.3 Information sources on prescribing charges to monitor and measure access to health care 210 6.5.4 The impact of charging for dental services on access to treatment 212 6.5.5 Information sources on dental service charges to monitor and measure access to health care 214 6.5.6 The impact of charging for ophthalmic services on access to treatment 214 6.5.7 Information sources on ophthalmic services charges to monitor and measure access to health care 214 6.5.8 The impact of charging for non clinical services on access to treatment 215 6.5.9 Information sources on non clinical service charges to monitor and measure access to health care 215 6.5.10 The impact of charging on access to social care 215 6.5.11 Information sources on local authority charges to monitor and measure access to health care 216 6.5.12 Summary 217 6.6 Transport and access to health care 221 6.6.1 Introduction 221 © NCCSDO 2006 4 Identification and evaluation of standardised datasets for measuring and monitoring access to health care 6.6.2 Issues relating to transport and access to health care 221 6.6.3 Routine datasets relating to transport and access to health care 223 6.6.4 Adequacy of existing data sources for measuring and monitoring transport and access to health care 225 6.6.5 Conclusions 227 Section 7 Summary, discussion and recommendations 233 7.1 Summary of findings and issues identified in each section 233 7.1.1 Hospital Episode Statistics (HES) 233 7.1.2 Data from Primary Care 235 7.1.3 Community data collections 235 7.1.4 Staffing data collections to measure access 235 7.1.5 Communicable disease data 236 7.1.6 Surveys and the Census 236 7.1.7 Vital statistics 237 7.1.8 Consultation with data users 237 7.1.9 Case studies 237 7.2 Discussion 241 7.3 Conclusions 242 7.4 Recommendations 243 References ..............................................................................245 Appendices Appendix A Letter on data collections from all providers 265 Appendix B Items in datasets described in the Report 295 Appendix C The Framework For Access applied to the datasets reviewed in the Report 347 Appendix D The development of NHS performance ratings 382 Appendix E Glossary 414 © NCCSDO 2006 5 Identification and evaluation of standardised datasets for measuring and monitoring access to health care Tables Table 1 Framework for access: populations 26 Table 2 Minimum standards for admitted patient care data items 36 Table 3 Average daily number of available beds, by sector, England, 1995-96 to 2001-02 47 Table 4 Diseases notifiable (to Local Authority Proper Officers) under the Public Health (Infectious Diseases) Regulations 1988 67 Table 5 Summary of health service data sources and the Access Continuum 76 Table 6 Items in the Psychiatric Morbidity Survey 91 Table 7 The work programmes of CESDI 1993-99 108 Table 8 Summary of population-based data sources and the Access Continuum 115 Table 9 Estimated prevalence of dementia among people aged 65 and over 132 Table 10 Staff and services involved in care of older people with mental illness 133 Table 11 Numbers of hospital beds and places in residential and nursing care homes for people with mental illness, England, 1994-95 to 2000-01 134 Table 12 Admissions to NHS hospitals under mental illness specialties by sex and age group, rate per 1000 population, England 1994-95 to 2001-02 134 Table 13 Case study 1 - Data sources relating to the mental