Reference and Process User Guide

Transcription

1 External Data Release 2 Reference and Process User Guide 2014 REFERENCE AND PROCESS USER GUIDE Growing Up in New Zealand October 2014 BR502 EN V2.1 1

2 1 Antenatal Data Set Release - Reference and Process User Guide

3 Contents 1 Introduction Background to the study 3 2 About the datasets External working datasets External data releases 5 3 Linking Growing Up in New Zealand datasets 8 4 Keeping the study data anonymous Study principles and participant consent The Data Access Protocol The Data Access Committee Data anonymisation principles 10 5 Data dictionaries Definitions of the attribute headings in the data dictionaries 11 6 Applying for access to the external working datasets Who can apply Process for applying for access to the external working datasets Application fee 14 Growing Up in New Zealand 2

4 1 Introduction The purpose of this document is to provide a reference guide for researchers interested in utilising Growing Up in New Zealand data. It provides an overview of the Growing Up in New Zealand study, information about the datasets, and how to apply for access to the datasets. This document is provided in conjunction with the second external data set release from Growing Up in New Zealand. 1.1 Background to the study Growing Up in New Zealand is a child-focussed longitudinal study that provides an up-to-date, population relevant picture of what it is like to be a child Growing Up in New Zealand in the 21st century. Approximately 7,000 children and their families are taking part in a study that aims to provide a complete picture of the pathways that lead to successful and equitable child development, therefore improving outcomes for all children - now and into the future. Growing Up in New Zealand is explicitly designed to follow children from before birth until they are young adults to understand what works for children and families and to consider pathways of development across multiple domains of influence. This will allow a much better understanding of the complex interplay of all the factors that lead to child outcomes including growth, health, behaviours and cognitive development. Information collected over the first two years of life includes longitudinal data from: Face-to-face interviews The antenatal Data Collection Wave (DCW) with the pregnant mother (most often in the last trimester of her pregnancy) and with her partner (almost always the biological father); The nine month DCW with the child s mother and her partner; The two year DCW with the child s mother and her partner, which also involved direct observations, developmental and anthropometric assessments of the children at two years of age. Telephone interviews These occurred when the children were 6 weeks, 35 weeks, 16 months and 23 months old. Data linkage Linkage between the Growing Up in New Zealand data and routinely collected perinatal health records. Each DCW of Growing Up in New Zealand seeks information across six inter-connected domains: family and whānau (extended family), societal context and neighbourhood, education, health and wellbeing, psychological and cognitive development, and culture and identity. Each cross-sectional DCW is planned according to a balance of age-appropriate information from all the inter-connected domains, in the context of the overarching longitudinal research objectives, while being as policy relevant as possible. Attention is also given to ensuring that the methods utilised to collect domain-specific evidence acknowledge the unique New Zealand population and environmental context. 3 Antenatal Data Set Release - Reference and Process User Guide

5 Since the study s inception, it has been envisaged that this rich and expanding resource would be used widely for research relating to children and their families in New Zealand. This is in line with the model used in other large longitudinal studies overseas (such as Growing Up in Ireland, Growing Up in Australia, Millennium Cohort Study (UK), and Growing Up in Scotland) where the data is made available for use in research and policy translation. The antenatal datasets were released for the first time in The focus of this document is to provide information to researchers interested in the second release of the Growing Up in New Zealand datasets, which also includes an update of the 2013 antenatal data. It is expected that all researchers interested in using the Growing Up in New Zealand datasets will be familiar with the key background documents describing the study in more detail available at In particular: Report 1: Before we are born Morton, S. M. B., Atatoa Carr, P. E., Bandara, D. K., Grant, C. C., Ivory, V. C., Kingi, T. R., Liang, R., Perese, L. M., Peterson, E., Pryor, J. E., Reese, E., Robinson, E. M., Schmidt, J. M., Waldie, K. E. (2010). Growing Up in New Zealand: A longitudinal study of New Zealand children and their families. Report 1: Before We Are Born. Auckland, Growing Up in New Zealand. ISBN: (electronic), ISBN: (print). Report 2: Now we are born Morton, S. M. B., Atatoa Carr, P., Grant, C. C., Lee, A., Bandara, D. K., Mohal, J., Kinloch, J., Schmidt, J., Hedges, M., Ivory, V., Kingi, T. K., Liang, R., Perese, L., Peterson, E., Pryor, J., Reese, E., Robinson, E., Waldie, K., Wall, C. (2012). Growing Up in New Zealand: A longitudinal study of New Zealand children and their families. Report 2: Now We Are Born. Auckland, University of Auckland. ISSN: (Print) Cohort profile Morton, S. M. B., Atatoa Carr, P., Grant, C. C., Robinson, E. M., Bandara, D. K., Bird, A., Ivory, V. C., Kingi, T. K., Liang, R., Marks, E. J., Perese, L. M., Peterson, E. R., Pryor, J. E., Reese, E., Schmidt, J. M., Waldie, K. E., Wall, C. (2012). Cohort Profile: Growing Up in New Zealand. International Journal of Epidemiology 42(1): DOI: /ije/dyr206 Recruitment and retention Morton, S. M. B., Atatoa Carr, P., Grant, C. C., Robinson, E. R., Bird, A. and Waayer, D. (2012). How do you recruit and retain a pre-birth cohort? Lessons learnt from Growing Up in New Zealand. Evaluation and the Health Professions. DOI: / Generalisability Morton, S. M. B., Ramke, J., Kinloch, J., Grant, C. C., Atatoa Carr, P., Leeson, H., Lee, A. C. and Robinson, E. (2014). Growing Up in New Zealand cohort alignment with all New Zealand births. Australian and New Zealand Journal of Public Health. DOI: / Questionnaires The Growing Up in New Zealand questionnaires used during the data collection waves are available when data collection is completed in the field. All questionnaires published to date are available for download on Further Growing Up in New Zealand publications are also available at Growing Up in New Zealand 4

6 2 About the datasets There are two types of Growing Up in New Zealand datasets: Internal Working Datasets are only available to researchers working in direct collaboration with the Growing Up in New Zealand research team. Researchers wishing to discuss collaborations should contact Associate Professor Susan Morton, Growing Up in New Zealand Research Director. External Working Datasets are publically available fully-anonymised datasets. This document details the process involved in applying for the External Working Datasets. 2.1 External working datasets External working datasets are defined in the Growing Up in New Zealand Data Access Protocol as fully anonymised datasets drawn from the internal working datasets which contain sensitive and identifying information. External working datasets do not contain identifying information. In this context: Fully Anonymised means having had all names, addresses, and any other identifying information removed. Identifying Information means personal information (as defined by the Privacy Act 1993) and includes data collected about a person from which the identity of that person or a member of his or her family could reasonably be ascertained. This is likely to increase in volume as more and more data is collected over time. 2.2 External data releases The following external data releases are available from Growing Up in New Zealand to date, as summarised in Table 1. Table 1: Summary of Growing Up in New Zealand external data releases to date DCW0 DCW1 Antenatal Perinatal 6wks 35wks 9mths Mother Information Partner Information Child Information Data Linkage* * Linkage to perinatal health records 5 Antenatal Data Set Release - Reference and Process User Guide

7 First external data release (Release DCW0) The first Growing Up in New Zealand data release, provided in 2013, included information collected during the antenatal period from the mothers of the cohort children, as well as information collected from the partners of the pregnant mothers. This information was collected during the first Growing Up in New Zealand data collection wave in 2009 and 2010 (the antenatal data collection wave). The antenatal DCW served three key purposes: 1. It collected baseline information about the parents, the family, the pregnancy and the wider environment from before the time of the child s birth. 2. It described the foundations for the future longitudinal data collections planned for the Growing Up in New Zealand cohort. 3. It was a critical part of the engagement of the parents of the cohort children to allow their child s development to be followed from before birth to their early adult life. The datasets released as part of the first external data release in 2013 were drawn from the antenatal data collection wave, namely: 1. Antenatal Mother Dataset (DCW0M): from 6,823 mothers of cohort children 2. Antenatal Partner Dataset (DCW0P): from 4,401 partners of the recruited mothers Second external data release (Release DCW1) The second external dataset release includes information collected from before birth and through the first nine months of the cohort children s development, and focuses on the children themselves as the key participants in the longitudinal study. An updated external antenatal dataset (DCW0) is also provided with DCW1 so that an early longitudinal perspective on child development can be considered. The external datasets up to 9 months being released in 2014 contain multidisciplinary information about the children from their birth until they are nine months old, as well as information from the children s mothers and their partners collected at the same time. Data collection took place at several times during this period including: Perinatal data linkage linkage to routine pregnancy, delivery and neonatal records to provide birth specific information (see 3.4) Six-week telephone interview which collected specific information about birth and the first few weeks of development 35-week telephone interview which updated contact and household details for the children 9-month DCW face-to-face interviews with mothers and partners independently. This DCW was largely undertaken when the cohort children were within one month of being nine months old. The child s age at interview (in months) is provided in the external dataset. Growing Up in New Zealand 6

8 Broad areas of data collection at the nine month interview included: 1. The infant s health and wellbeing, including breastfeeding, immunisation, common illnesses, admissions to hospital 2. Early nutrition and behaviours 3. Developmental milestones 4. Parenting values, styles and parent-child interactions 5. Parental relationship and mental, physical and emotional wellbeing 6. Family living conditions, including family structure, overcrowding and home environment 7. Interaction with health providers and other services 8. Parental leave, return to work, income, childcare arrangements 9. Home tenure and neighbourhood characteristics 10. Language use, cultural identity and ethnicity For more detail see the questionnaires available on the website ( 7 Antenatal Data Set Release - Reference and Process User Guide

9 3 Linking Growing Up in New Zealand datasets This external dataset release is the first to provide longitudinal information and to allow linkage of datasets between informants at one point in time as well as across time. The datasets can be linked in different ways. The way in which they should be linked will depend on the research question and planned analyses. Child ID, Mother ID and Partner ID are provided to enable merging across datasets. Note that the child dataset does contain multiple births, in which case parental data may be repeated if a child-focussed linkage is undertaken. Identification (ID) structure: For external dataset release, seven digit alphanumeric pseudo identification keys have been developed to protect the identity of all the informants (including the child, mother and partner). Participant pseudo identification keys are specific to a particular data release. Merging key: The child is the focus of the study and collected information. Children and their identification keys remain constant over time, but the mother and partner may change between data collection waves. For this reason, in Growing Up in New Zealand datasets the primary merging key is child ID (IDN_child). Merging datasets: The identification table DCW0_IDN provides the information to enable linkage between the antenatal mother external working dataset (DCW0M) and antenatal partner external working dataset (DCW0P). Data from DCW1C, nine month mother external working dataset (DCW1M) and nine month partner external working dataset (DCW1P) can be merged. Data sets from DCW0 and DCW1 can be merged using the Child ID. Figure 1 depicts how the datasets within the DCW1 external data release may be linked. Figure 1: Schematic of dataset linkage in DCW1 data release DCW1C IDN_CHILD IDN_W6M IDN_M9M IDN_M9P DCW1M IDN_M9M DCW1P IDN_M9P DCW0_IDN IDN_CHILD DCW0M IDN_AM IDN_AM DCW0P IDN_AP IDN_AP Growing Up in New Zealand 8

10 4 Keeping the study data anonymous 4.1 Study principles and participant consent One of the most important principles of the Growing Up in New Zealand study is that the data made available is fully anonymised. This protects the privacy of participants and enables the collection of sensitive data because confidentiality is assured. The consent form for participants stated: I understand that the research team will keep my involvement in this study confidential, and that no material that could identify me will be used in any reports on this study. The Participant Information Sheet that accompanied this Consent Form stated: The information about your child and family is completely confidential. No information that could identify you or your child will be used in any reports on this study. In all processes, Growing Up in New Zealand must therefore ensure that all researchers adhere to these statements and keeping data anonymous must be balanced with providing data for robust, contemporary, population relevant analysis. For this reason, the use of all external datasets must ensure that: Involvement in the study is kept confidential and individual participants cannot be identified; All access to the Growing Up in New Zealand data is driven by the requirements set out in the Growing Up in New Zealand Data Access Protocol; All access to the Growing Up in New Zealand data is overseen by the Data Access Committee. 4.2 The Data Access Protocol The Data Access Protocol is a key document that sets out how the data from Growing Up in New Zealand can be accessed. All researchers using the Growing Up in New Zealand external datasets must be familiar with the Data Access Protocol. The Data Access Protocol includes: The principles that govern data access The process by which researchers may apply for data access The provisions that are used to safeguard the privacy of study participants and their families The provisions that are used to ensure the long-term sustainability of the study The role and function of the Data Access Committee that will oversee the operation of the protocol The provisions that are used to guide authorship decisions and publication of papers produced under the protocol. All publications that utilise the data must be approved by the Data Access Committee prior to being submitted for publication. This is to ensure that the publication is in keeping with the principles of confidentiality and sustainability laid out in the Data Access Protocol. As part of this Data Access Protocol, applications to use the external working datasets must include a brief dissemination plan. Further information about how to apply for the external working datasets is provided in section 6 of this document. 9 Antenatal Data Set Release - Reference and Process User Guide

11 4.3 The Data Access Committee The role of the Growing Up in New Zealand Data Access Committee (DAC) is to facilitate the provision of appropriate access to data collected in the study by approved researchers under the terms and conditions of the Data Access Protocol. As such, external working datasets cannot be used without the prior approval of the Data Access Committee, and adherence to the Data Access Protocol. 4.4 Data anonymisation principles This section provides detailed information about the principles that have been applied to create the fully anonymised external working datasets. As outlined previously in this document, anonymity of the participant s data is a fundamental principle of the Growing Up in New Zealand study. In order to ensure that any individual participant s data remains anonymous, whilst maintaining the integrity of the information, derived or re-categorised variables have been created where necessary. The principles that have been adopted to create the external working datasets are applied to mother, partner and child data and are summarised in Table 2. Table 2: Summary of high-level anonymisation principles Variable Type Principle applied Example Highly sensitive raw variables Data is presented as a derived and/or re-classified variable. These derived or re-classified variables still provide the necessary information to undertake analyses Gestation term (TERM_PDL): in DCW1C, this variable is not presented as the continuous variable determined through linking parental report of gestational age to the harmonised perinatal data, but as a categorical variable ( PreTerm, Term or PostTerm ). Date-specific variables Dates have been converted to day, month or year Maternal Age (AGE_AM): in DCW0M, maternal date of birth have been converted to a variable that presents the mother s age in years. Categorical variables with small cell counts Small cell count categories have been re-categorised Alcohol consumption (ALC4GP_m9M): in DCW1M, Average servings of alcohol per week, was re-categorised at the upper level to create a single combined category of 20+ drinks per week. Continuous variables with low frequencies at the lower or the upper extremes Multipleresponses with low frequencies Free text variables Low frequency extremes distributions have been re-categorised Responses with low frequencies have been combined to create a new response variable Free text is not released in a raw form, but has instead been classified and categorised Age in years at which smoking started (SM3_AM): in DCW0M, At what age did you begin to smoke regularly, that is smoking every day? was re-categorised at the lower extreme of the continuous data, producing a category of 10 years of age and at the upper extreme of the continuous data, producing a category of >=30 years of age. Gambling activities on which money was spent in the last 12 months: in DCW1P, the responses for Casino Gambling Tables and Casino Pokie Machines were combined to create a single variable (NGA1_2_M9P), with the label Casino Gambling Tables or Casino Pokie Machines. In DCW0M, the free-text responses to the question that asked for one or two sentences about what hopes, dreams and expectations you have for your baby have been classified into categorical variables. Growing Up in New Zealand 10

12 5 Data dictionaries The Growing Up in New Zealand data dictionaries are designed to provide researchers with a comprehensive understanding of the external datasets. These should be read alongside the relevant questionnaires (available through The Growing Up in New Zealand data dictionaries are available in Hypertext Markup Language (HTML) format. 5.1 Definitions of the attribute headings in the data dictionaries The headings are shown in the order in which they appear (left to right) across the top row of the data dictionaries (Table 3). All definitions include examples from the data dictionaries. Table 3: Definitions of the attribute headings Attribute Heading Position Questionnaire Number Question Variable Name Format Name Formatted Data Values Value Labels Explanation The order of a variable as it appears in the dataset. The questionnaire number for the variable. The external working datasets do not necessarily match the questionnaires exactly because some variables were not able to be released because of issues of anonymity and confidentiality they have informed derived variables. The question text or a shortened version of the question text. Some questions are single response questions and others are multiple response questions. For this reason, the data dictionary should be read in conjunction with the questionnaires. The unique identifier for the variable in the datasets. User defined name for a format in SAS language. Format associates data values and its description for a variable. Lists levels or categories within a variable, where a description is required. For example, Age_AM in DCW0M, the formatted data value 18 represents mothers who are 18 years old or younger and the formatted data value 41 represents mothers who are 41 years or older. Description of formatted data values. Describes how different variables in the external working datasets have been presented. These are: 1. Raw Variables: Data values that have maintained their original form and structure from the internal working dataset with no subsequent transformations. Variable Type 2. Re-categorised Variables: Numeric data values that have been re-categorised from the original raw form. 3. Re-classified Variables: Numeric data values or free-text responses that have been re-classified. 4. Derived Variable: A new variable that has been derived from one or more raw variables. 5. Derived and Re-categorised Variables: A new variable that has been both derived first and subsequently re-categorised. 11 Antenatal Data Set Release - Reference and Process User Guide

13 6 Applying for access to the external working datasets 6.1 Who can apply The intention of Growing Up in New Zealand is to ensure that the robust and contemporary information collected about New Zealand children within the longitudinal datasets will be well utilised to inform policy and research. In order to comply with the Growing Up in New Zeland Data Access Protocol however, the applicant for the external data needs to be an accredited researcher within a university, crown agency, research institute or other equivalent organisation in New Zealand or overseas, as described in Table 4. Table 4: Applying for access to the external working datasets Who can apply to access the External Working Dataset How to apply for access to the External Working Dataset Research (or equivalent) located in New Zealand Research (or equivalent) located outside New Zealand Researcher located in New Zealand at a university or other equivalent organisation This includes the following research categories: Academics Researchers Research assistant Enrolled masters or PhD students Researcher (or equivalent) located in New Zealand at a crown agency Researcher (or equivalent) located in New Zealand at an organisation where the primary business is research Researcher (or equivalent) located in New Zealand at a district health board, council or other statutory body Researcher (or equivalent) located in New Zealand at a non-government organisation that focuses on children, families and/or communities. Researchers located in New Zealand at any other organisation (including commercial organisations, private companies, lobby groups) Researcher located outside New Zealand at a university or other equivalent organisation This includes the following research categories: Academics Researchers Research assistant Enrolled masters or PhD students Researchers located outside New Zealand at any other organisation Researcher applies to access the data according to the process summarised in section 6.2. The forms also require approval by the chief executive, or equivalent, of that organisation or institution. Where a research assistant or student is the applicant, the forms also require approval by the senior researcher managing the research assistant or the student s supervisor. Will be considered on a case by case basis. Please contact the External Working Dataset Data Access Coordinator in the first instance. Researcher applies to access the data according to the process summarised in section 6.2. The forms also require approval by the chief executive, or equivalent, of that organisation or institution. Where a research assistant or student is the applicant, the forms also require approval by the senior researcher managing the research assistant or the student s supervisor. Will be considered on a case by case basis. Please contact the External Working Dataset Data Access Coordinator in the first instance. Growing Up in New Zealand 12

14 6.2 Process for applying for access to the external working datasets The following steps describe how to apply for access to the external working datasets 1. Have attended a Data Access Workshop. Alternatively, have reviewed the materials covered in the workshops (available at ) 2. Complete the Application Form available on Applications will be reviewed by the Growing Up in New Zealand Data Access Committee (DAC) which meets regularly. The DAC will endeavour to review applications at the next available meeting, although this will depend on when the application is received and the number of applications to be reviewed. Dates for scheduled DAC meetings can be found at 3. Send the signed form to [email protected] 4. Pay the required application fee. When the application is received: 1. The application will be reviewed before the DAC meeting for completeness and to assess whether the requirements have been met. 2. The DAC will formally review the application and make a final decision on the application. 3. The Data Access Coordinator will inform applicants of the outcomes of their application 4. Where applications have been approved, the Data Access Coordinator will facilitate the provision of the external working datasets to the applicant. Questions regarding data access and applications to use the data are welcomed. For more information please contact the External Data Access Coordinator via [email protected]. When the end date of the research application is reached: At the end date of the research the applicant is required to follow the steps set out in the Data Access Agreement to destroy all copies of the external working dataset and identifying information. When you are ready to publish and before you submit your manuscript: 1. Complete the Application to Publish form. This can be found at 2. Send the signed form along with the draft publication to [email protected]. 3. The DAC will review the application to publish (with respect to their review of privacy and confidentiality principles) and make a final decision on the application to publish. 4. The Data Access Coordinator will inform applicants of the outcomes of their application to publish within 10 working days of the application being reviewed by the DAC. 13 Antenatal Data Set Release - Reference and Process User Guide

15 6.3 Application fee The fee associated with applying for the external working dataset is available on the Growing Up in New Zealand website: This fee is paid as part of the initial application process. It is partly refundable if the application is not approved. Growing Up in New Zealand 14

16 Growing Up in New Zealand University of Auckland, Tamaki Campus, Building 730, PO Box 18288, Glen Innes, Auckland 1743 Phone: Copyright 2014 Growing Up in New Zealand. The contents of this published document are provided in good faith and to the best of our knowledge represent accurately the designs and services supplied by Growing Up in New Zealand and its business partners. The details herein do not constitute any legal contract or agreement to fulfil services and due to the nature of the industry and speed of systems development, we reserve the right to change, update or correct any of the systems or services described without notice. Partner or Participant quotes have been reproduced by kind permission of the originators. Content is copyright of Growing Up in New Zealand, unless otherwise stated, and cannot be reproduced in any way, form or format without written permission. 15 Antenatal Data Set Release - Reference and Process User Guide BR V2.1