Presentation Outline (1) Secondary Data Work for You!.pdf · HIV Antenatal Testing HIV Case Based Reporting System Hospital In-Patient Enquiry Immunisation Uptake Statistics Irish

CSTAR Seminar on Secondary Data Analysis June 19th 2012

Dr Mary Codd Making Secondary Data Work for You!

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Mary Codd MD, PhD

Senior Lecturer,

Epidemiology & Biostatistics, UCD

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Presentation Outline (1)

Additional sources of Secondary Data in

Ireland (… emphasis primarily on Health /

Health Services data)

Identifying the data you need / want (…. to

answer your Research Question)

Accessing the data (…. make sure you can

before developing your Research Proposal!)

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Understanding the data you get

‘Researching’ the data you get

Manipulating the data you get

Analysing the data you get



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Catalogue of National Health Information Sources in Ireland Version 1.0

July 2010

Safer Better Care

Additional Sources

of Secondary Data

in Ireland

www.hiqa.ie

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HIQA Catalogue of Sources

Published July 2010 (may already be dated)

Preceded by the All-Ireland Health Data

Inventory (Institute of Public Health 2007)

Systematic attempt to document all sources of

health data available in Ireland

97 sources of health-related data listed

Attempt to describe a set of key attributes

(standardised description) of each dataset

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HIQA: Listed Sources

Nat’l Sources of Health and Social Care

information in Ireland (n=57)

Nat’l Censuses (n=6)

Sources without Nat’l Coverage / Reg’l (n=7)

Secondary Data Sources (n=18)

Nat’l Surveys (mostly incl. in ISSDA) (n=9)

90 of 97 sources categorised into ‘logical’ entities

- only one Point of View (MC)



Catalogue of National Health Information Sources in Ireland

Health Information and Quality Authority

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Patient Treatment Register (PTR) PHECC - Cardiac First Response Report (CFRR) PHECC - Patient Care Report (PCR) PHECC - Patient Transport Report (PTR) Primary Care Reimbursement Service (PCRS) Data Sentinel Flu Surveillance Sexually Transmitted Infections Database STARSWeb (Clinical Incident Reporting System) Syphilis Enhanced Surveillance System Vital Statistics - Deaths registration Vital Statistics - Live Births Registration Work Related Injuries Database Workplace Fatalities Database



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6 National Sources of Health and Social Care information in Ireland

Alpha One Patient Registry Blood Donor Database BreastCheck (The National Breast Screening Programme) Central Treatment List (CTL) CervicalCheck: Cervical Screening Register Clostridium difficile enhanced surveillance Computerised Infectious Disease Reporting (CIDR) Cystic Fibrosis Registry of Ireland Enhanced Bacteraemia (Bloodstream infections) Surveillance in Ireland Emergency Department Activity data Fatalities and other Traffic Statistics Heart Rhythm Ireland (Irish National Pacemaker Register) HIV Antenatal Testing HIV Case Based Reporting System Hospital In-Patient Enquiry Immunisation Uptake Statistics Irish Biologic Therapies Register Irish Childhood Diabetes National Register Irish Epilepsy and Pregnancy Register Irish Motor Neurone Disease Register Irish Unrelated Bone Marrow Registry (IUBMR) MHC - Admissions of Children to Approved Centres MHC - Deaths relating to all residents in Approved Centres MHC - Involuntary Admission Activity MHC - Use of ECT, Seclusion and Restraint in approved centres MRSA in Intensive Care Units (ICU) Surveillance National Antimicrobial Resistance Surveillance National Cancer Registry Data National Cleft Database National Drug Treatment Reporting System (NDTRS) National Drug-Related Deaths Index (NDRDI) National Haemophilia Register National Hepatitis C Database National Intellectual Disability Database (NIDD) National Organ Procurement Service Statistics National Paediatric Haemopoietic Stem Cell Transplantation National Paediatric Mortality Register National Perinatal Reporting System National Physical and Sensory Disability Database (NPSDD) National Poisons Information Centre Database National Psychiatric Inpatient Reporting System (NPIRS) National Registry of Deliberate Self Harm Ireland National Renal Transplant Registry National Tuberculosis Surveillance System (NTBSS) NHS Blood and Transplant Audit UK & Ireland



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6 National Sources of Health and Social Care information in Ireland

Alpha One Patient Registry Blood Donor Database BreastCheck (The National Breast Screening Programme) Central Treatment List (CTL) CervicalCheck: Cervical Screening Register Clostridium difficile enhanced surveillance Computerised Infectious Disease Reporting (CIDR) Cystic Fibrosis Registry of Ireland Enhanced Bacteraemia (Bloodstream infections) Surveillance in Ireland Emergency Department Activity data Fatalities and other Traffic Statistics Heart Rhythm Ireland (Irish National Pacemaker Register) HIV Antenatal Testing HIV Case Based Reporting System Hospital In-Patient Enquiry Immunisation Uptake Statistics Irish Biologic Therapies Register Irish Childhood Diabetes National Register Irish Epilepsy and Pregnancy Register Irish Motor Neurone Disease Register Irish Unrelated Bone Marrow Registry (IUBMR) MHC - Admissions of Children to Approved Centres MHC - Deaths relating to all residents in Approved Centres MHC - Involuntary Admission Activity MHC - Use of ECT, Seclusion and Restraint in approved centres MRSA in Intensive Care Units (ICU) Surveillance National Antimicrobial Resistance Surveillance National Cancer Registry Data National Cleft Database National Drug Treatment Reporting System (NDTRS) National Drug-Related Deaths Index (NDRDI) National Haemophilia Register National Hepatitis C Database National Intellectual Disability Database (NIDD) National Organ Procurement Service Statistics National Paediatric Haemopoietic Stem Cell Transplantation National Paediatric Mortality Register National Perinatal Reporting System National Physical and Sensory Disability Database (NPSDD) National Poisons Information Centre Database National Psychiatric Inpatient Reporting System (NPIRS) National Registry of Deliberate Self Harm Ireland National Renal Transplant Registry National Tuberculosis Surveillance System (NTBSS) NHS Blood and Transplant Audit UK & Ireland



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9 Secondary data sources

Ageing in Ireland Drug Situation Ireland European Health for all Database (HFA-DB) European Surveillance of Congenital Anomalies (EUROCAT) Eurostat Health Statistics Health Atlas Health Expenditure Statistics HealthStat HSE - Non Acute Services Performance Reports (PR) Process Ireland and Northern Ireland's Population Health Observatory (INIsPHO) Irish Casemix Programme Organisation for Economic Co-Operation and Development (OECD) Health Data Public Health Information System (PHIS) State of the Nation's Children Statistical Information on Social Welfare Services Surveillance of antimicrobial consumption in Ireland Women and Men in Ireland World Health Organization Global Health Observatory



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7 National Censuses

Census of Children’s Residential Centres Census of Population and other Population Data Children in Care Dataset Health Service Personnel Census Irish Psychiatric Units and Hospitals Census Long-Stay Activity Statistics



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10 National Surveys

European Social Survey Growing Up in Ireland Health Behaviour in School Aged Children Lifeways SHARE - Survey of Health, Ageing and Retirement in Europe (SHARE) SILC - Survey on Income and Living Conditions SLÁN - Survey of Lifestyle, Attitudes, and Nutrition Quarterly National Household Survey QNHS - Health Module TILDA - The Irish Longitudinal Study on Ageing

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What ‘Level’ of Data can you

get?

It is critically to understand / ascertain what

level of data you can get from the source of

interest

Aggregrate only?

– Useful for providing summary / ‘overview’ of topic

– Can be used as background information

– Of limited value as ‘research’ data

Individual Level?

– Required for ‘analysis’ of data or if using data from

this resource in addition to other collected data



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Census Data /Disability /Ageing

54: Vital Stats – Death Registration **

55: Vital Stats – Births Registration

59: Census of Population

87: Women & Men in Ireland

38: Nat’l Physical / Sensory Disability Db

71: Ageing in Ireland

** Individual Level Data / Actual Death Certificate

Data will require permisssion and review / GRO

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General Health / SW Status

73: HFA-DB

75: Eurostats

76: Health Atlas

78: HealthStat

80: INSsPHO

82: OECD

83: PHIS

84: State of Nation

85: Soc.Wel. services

88: WHO Global Hlth

89: Lifeways

90: Health Behaviours

in School Children

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Cardiovascular Disease

11: Irish Nat’l Pacemaker Register

64: Cardiac Surgical Registers

66: CHAIR (?)

67: HeartBeat Programme

68: Heartwatch

69: Out of Hosp Cardiac Arrest (OHCAR)



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Cancer / Neurological Disease

2: BreastCheck

4: CervicalCheck

27: National Cancer Registry of Ireland

(www.ncri.ie)

Neurological Diseases

18: Irish Epilepsy & Pregnancy Register

19: Irish MND Register

65: Cerebral Palsy Register

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Infectious Diseases

5: C. Difficile

6: CIDR

8: Bacteremia

12: HIV antenatal

13: HIV Reporting

15: Immunisation

25: MRSA

Several HPSC databases

26: AntiB Resist

32: Nat’l Hep C

43: Nat’l TB

50: ‘Flu Surveillance

51: STI Db

53: Syphilis Db

86: Antimicrob Use

(www.hpsc.ie)

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Psychiatric Services /

Intellectual Disability

23: MHC – Involuntary Admission Activity

24: MHC – ECT, Seclusion, Restraint

33: MHC – Nat’l Intellectual Disability

40: Nat’l Psych Inpatient Reporting

41: Nat’l Reg. Deliberate Self Harm

62: Irish Psych Units Census

http://www.ncri.ie



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Donation / Biologic Therapies

1: Alpha 1 Blood Donor Registry

7: Cystic Fibrosis Registry

16: Irish Biologic Therapies

20: Irish Bone Marrow Registry

31: National Haemophilia Register

34: Nat’l Organ Procurement

35: Nat’l Paed Haemopoietic Stem Cell

42: Nat’l Renal Transplant Registry

44: NHS Blood and Transplant Audit

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Specific to Children

17: Irish Child DM Nat’l Register

36: Nat’l Paed Mortality Register

37: Nat’l Perinatal Reporting System

Congenital Abnormalities

28: Nat’l Cleft Database

74: EUROCAT

** Nat’l Centre for Screening for IEM, Temple St

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Accidents / Drug Rx / Poisons

10: Fatalities / Traffic Statistics

29: Nat’l Drug Rx Reporting System

30: Nat’l Drug-related Death Index

39: Nat’l Poisons Centre Db

56: Work Related Injuries Db

57: Workplace Fatalities Db

72: Drug Situation Ireland



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Health Sevices / Utilization /

Administration / Expenditure

3: Central Rx List

14: HIPE

21: MHC-Admissions

22: MHC-Deaths

45: Patient Rx Reg

49: Prim Care RS

52: STARSWeb (Clinical Incident

Reporting System)

58: Children’s Resid

60: Children in Care

61: HS Personnel

63: Long Stay Stats

77: H Expenditures

79: HSE- Non acute

81: Casemix Prog

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Emergency Care Statistics

9: Emegency Dept Activity Stats

46: PHECC – First Response Reports

47: PHECC – Patient Care Reports

48: PHECC – Patient Transport Reports



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Field name Description Example

Title Official name of the data source/ registry Hospital In-Patient Enquiry (HIPE)

Creator/ Data holder

Name of organisation responsible for overseeing data collection and the management and supervision of the data source.

Health Research and Information Division in the Economic and Social Research Institute, in conjunction with the Department of Health and Children and the Health Service Executive.

Contributor Organisations/ individuals responsible for contributing to the content of the data source.

Irish public hospitals

Publisher Name of organisation responsible for publishing information relating to the data source

Economic and Social Research Institute

Subject PHL terms and/or keywords to describe what the data source is about.

PHL terms: DEMOGRAPHIC DATA, HOSPITAL DISCHARGE, IN-PATIENT SERVICES

Description/ Summary

General description of the content of the data source

HIPE is a computer-based system designed to collect demographic, clinical and administrative data on discharges from, and deaths in, acute hospitals nationally.

Method of data collection

Describe the principal method of data collection

Data is taken from medical charts or records and coded by clinical coders

before entering into HIPE system

Data content

Summary of the type of information collected

Includes details of admission and discharge, diagnoses and procedures. Patient details include area of residence, gender, date of birth, GMS status and marital status.

Data dictionary Has a dictionary of the data elements for the data source been developed?

Yes -published on website

Clinical coding scheme

What clinical coding/ disease classification scheme is in operation?

ICD-10-AM for coding diagnoses and ACHI for procedures. 6th edition in use since 1.1.09

Accessing data How to access data Online data reporter on website; HIPE annual reports; Data requests

Date collection commenced

Date data source was established Commenced as a pilot in 1969; in 1990 management transferred to ESRI

Published information / update frequency

How often is the data published/ updated?

Annual reports from 1990 published on website

Type The category of the data in the resource (e.g. dataset, report). Relates to what the data source is.

Dataset.

Format The physical format that the resource is available in – for example, electronic or

Electronic copy – available in Access.

What

information

can you get

from these

sources?





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Creator/ Data

holder

Name of organisation responsible for

overseeing data collection and the management and supervision of the data source.

Health Research and Information

Division in the Economic and Social Research Institute, in conjunction with the Department of Health and Children and the Health Service Executive.









HIPE is a computer-based system designed to collect demographic, clinical and administrative data on discharges from, and deaths in, acute

hospitals nationally.





Data content















Dataset.





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hard copy, software needed to access the data source.

Identifier Website address (URL) for the data source

http://www.esri.ie/health_information/hipe/

Coverage Geographical coverage of the data source National - all acute public hospitals participate in HIPE.

Other comments

Please add any additional comments in relation to dataset

Table 1: Summary template for description of information sources

4.3 Identification of data sources To identify national sources for potential inclusion in this Catalogue (such as the National Cancer Registry of Ireland), thorough desktop research was undertaken. This was further supported by input from key stakeholders in order to prepare a list of the national health and social care information sources in Ireland. The following data reviews were also examined to identify national sources: All-Ireland Health Data Inventory (INIsPHO)(7) – prepared from published reviews of

official data sources, two of which were also reviewed for this work(5,6) Survey of patient registries in Ireland (HSE) – in preparation Data Point – Department of Health and Children- an internal application within the

Department for data sourcing. 4.4 Selection of sources for inclusion National health data sources were defined for the purposes of this project as national collections of routine, currently collected health and social care data (including administrative sources, censuses, national routine surveys, and patient registries) in the Republic of Ireland. These sources were also considered to be ‘primary’ sources of health information. An example of a national health data source is the Hospital In-Patient Enquiry System (HIPE) which collects information on discharges from acute hospitals nationally. These sources are outlined in section 6 of this Catalogue. While identifying sources for potential inclusion in this Catalogue, it became evident that not of all sources had national coverage (for example some systems such as Wisdom have been implemented on a pilot basis in one region). These regional data collections are still of national importance, however, so it was decided to include them and list them in a separate section. These sources are outlined in section 8 of this Catalogue.

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Other Health Information

Sources, not included in HIQA

National Resources

– Irish Cardiac Valve Bank Register

– Irish Diabetic Retinopathy Register

– Nat’l Spinal Injuries Register

– Nat’l Heart / Lung Transplant Register

– Nat’l Council for the Blind of Ireland (NCBI)

Many Regional / Local Resources

– Regional Rx Centres

– Interested Stakeholders

– Resources

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Other sources, cont:

Eligibility for Health Services

– GMS Database

– Drug Refund Scheme

– Long Term Illness Payments

Private Health Insurance data (VHI & other)

– Demographic / Clinical (reason for claims)

– Precedent

• 1989: Population Register for Breast Screening pilot

• 1994: Establishment of Nat’l Cancer Register

• 2012: VHI Diabetes Study / Aortic Stenosis / DMR



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You finally have the data!

What next?

What format?

How many Observations?

How many Variables?

What Variables?

Aggregrate or Individual Level?

– AMF (Anonymised Microdata File)?

– RMF (Research Microdata File)?

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– Who do they represent (Populations / Samples)

– How were they collected / by whom

‘Researching’ the data you get

– Get the Questionnaires / Codebooks

– Contact the Researchers

– Ask for More!

Manipulating the data you get

Analysing the data you get

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The Population base

The Sampling strategy

Adjustments made

Weights applied

Missing data

– How have they been handled?

– How will you handle them?

Interpretation of data

– Is there a Codebook / Data Dictionary?



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Population

Population or Sample

– Whole population (Census / NCRI)

– Part of the Population

• Regional / Local (Hospital / Institutional)

• Part of the Whole ! (HIPE)

What restrictions will this impose?

– Depends on the RQ / Condition of interest

– MI / Hip fractures vs DM / Cataract Surgery



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Creator/ Data holder

Name of organisation responsible for overseeing data collection and the management and supervision of the data source.

Health Research and Information Division in the Economic and Social Research Institute, in conjunction with the Department of Health and Children and the Health Service Executive.









HIPE is a computer-based system designed to collect demographic, clinical and administrative data on discharges from, and deaths in, acute hospitals nationally.





Data content















Dataset.





14



Creator/ Data

holder

Name of organisation responsible for

overseeing data collection and the management and supervision of the data source.

Health Research and Information

Division in the Economic and Social Research Institute, in conjunction with the Department of Health and Children and the Health Service Executive.









HIPE is a computer-based system designed to collect demographic, clinical and administrative data on discharges from, and deaths in, acute

hospitals nationally.





Data content















Dataset.





15


hard copy, software needed to access the data source.

Identifier Website address (URL) for the data source

http://www.esri.ie/health_information/hipe/

Coverage Geographical coverage of the data source National - all acute public hospitals participate in HIPE.

Other comments

Please add any additional comments in relation to dataset

Table 1: Summary template for description of information sources

4.3 Identification of data sources To identify national sources for potential inclusion in this Catalogue (such as the National Cancer Registry of Ireland), thorough desktop research was undertaken. This was further supported by input from key stakeholders in order to prepare a list of the national health and social care information sources in Ireland. The following data reviews were also examined to identify national sources: All-Ireland Health Data Inventory (INIsPHO)(7) – prepared from published reviews of

official data sources, two of which were also reviewed for this work(5,6) Survey of patient registries in Ireland (HSE) – in preparation Data Point – Department of Health and Children- an internal application within the

Department for data sourcing. 4.4 Selection of sources for inclusion National health data sources were defined for the purposes of this project as national collections of routine, currently collected health and social care data (including administrative sources, censuses, national routine surveys, and patient registries) in the Republic of Ireland. These sources were also considered to be ‘primary’ sources of health information. An example of a national health data source is the Hospital In-Patient Enquiry System (HIPE) which collects information on discharges from acute hospitals nationally. These sources are outlined in section 6 of this Catalogue. While identifying sources for potential inclusion in this Catalogue, it became evident that not of all sources had national coverage (for example some systems such as Wisdom have been implemented on a pilot basis in one region). These regional data collections are still of national importance, however, so it was decided to include them and list them in a separate section. These sources are outlined in section 8 of this Catalogue.



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Definitions

Does the data source have the variables you

want?

If yes, is the definition as you want it?

– Income

• Individual / Household /

– Children

• Biological / Adopted / Foster / Step

Childlessness

– Ever / now

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Study Variables

Decide the study variables to be used • Seek multidisciplinary input

• DOCUMENT THE AGREED VARIABLES

Define each variable to be used • Discuss and agree the definition of each variable the

Multidisciplinary Team

• DOCUMENT THE AGREED DEFINITIONS

• Use existing classification systems, if any

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Basic Data Management:

Elements

1. What Data?

2. Where to find them?

3. How were data collected?

4. How did Project Team ensure consistency in data collection?

5. How are data collated electronically?

6. How to ensure the validity of data in database?

7. How to ensure the security of data in database?

8. How to analyse, interpret and report findings?

In so far as possible all aspects should be addressed and planned for at the before the project begins



34


Elements

1. What Data?

2. Where to Find?

Decide what Data Items (Variables) – Group Items / Variables into Categories

• Administrative

• Demographic

• Attitudinal / Behavioural

• Clinical

• Economic

• Occupational

• Other relevant to your Project

Sources of Data (Primary / Secondary) • Public domain (e.g. Vital Stats,

Registry Data)

• Requests from existing databases (e.g. ESRI / HIPE)

• Records available (e.g. Company, Medical)

• ‘New’ data (e.g. questionnaires, clinical data)

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Elements

3. How were data collected?

4. How did Project Team ensure consistency in Data Collection?

(QA in data collection)

Standardised Format – Questionnaire / Structured Interview

– Case Report Form

– Electronic Spreadsheet

Standardised Terminology, i.e. for each variable you should have: – Full name & abbreviation if used

– Full definition

– Source(s)

– Type (Quantitative/Qualitative)

– Type (Categorical/ Discrete/Continuous)

– Level of Measurement

– Coding Options (very important)

This is called a Data Dictionary

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A Data Dictionary /Codebook

Is an essential item in any study

Underpins standardisation of data being collected

Is essential for training study personnel

Facilitates assessment of data quality

Ensures adherence to study protocol

Invaluable at data analysis phase

Should be included in Thesis Appendices



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What’s in Data Dictionary?

For each Variable:

• Column in which entered (if in Excel)

• Abbreviation to be used (appropriate & intelligible)

• Full name of the Variable with Unit of Measurement

• Definition of the Variable (complete & agreed)

• Source(s) – where and how to find information

• Type (Quantitative/Qualitative)

• Type (Continuous/Discrete/Categorical)

• Level of Measurement

• Coding Options (mutually / non-mutually exclusive)

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Elements

5. How are data collated electronically?

6. How to ensure validity) of data in your database?

(QA of database data)

Create a Database

– Excel / Access / Other

– Relational / Bespoke

Standardised Routines for:

– Identification of errors e.g. missing

data, incorrect or illogical entries (the

Data Dictionary is critical to this)

– Correction of errors (data cleaning /

editing strategies, possible including

review of source documents)

– Documentation / log of edits made

– Keep an Audit Log

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Elements

7. How to ensure security of data in the database?

8. How to Analyse, Interpret & Report findings?

Data Security Measures

– Care / security of source documents

• Questionnaires / CRF’s

• Personal Identification

– Care / security of hardware

• PC / Laptop / USB

– Software security

• Basic / sophisticated

Statistical Analysis

– Standard statistical software

– Standard and more sophisticated

statistical techniques, taking account

of sampling strategies.

– May need to do Factor Analysis,

Multilevel / Multivariable Modelling



Use of

Secondary Data

vs

Secondary Use

of Data

Documents

Presentation Outline (1) Secondary Data Work for You!.pdf · HIV Antenatal Testing HIV Case Based Reporting System Hospital In-Patient Enquiry Immunisation Uptake Statistics Irish