Publishing survey data research
You must also adhere to the following guidelines.
All publications (including those using data from external datasets linked with survey data) must include the following acknowledgement:
The research on which this (paper, book, monograph, abstract or report) is based was conducted as part of the Australian Longitudinal Study on Women’s Health by the University of Queensland and the University of Newcastle. We are grateful to the Australian Government Department of Health for funding and to the women who provided the survey data.
Please note that if you have used linked data (including death data) there are additional acknowledgement requirements (see Publishing linked data research).
Please note that in any publication you must refer to the ALSWH cohorts by their official cohort names based on their birth years. While historically the cohorts have been referred to by the terms ‘young’, ‘mid-age’ and ‘old’, the terms may no longer be accurate as the women are ageing over the progress of the study. The official cohort names based on their birth years are listed below:
Where the food frequency questionnaire has been used, Cancer Council Victoria must be acknowledged with the statement “The authors thank Professor Graham Giles and Professor Roger Milne of the Cancer Epidemiology Centre of Cancer Council Victoria, for permission to use the Dietary Questionnaire for Epidemiological Studies (Version 2), Melbourne: Cancer Council Victoria, 1996.” Furthermore, all parties are to notify each other before presenting any DQES data at a conference, seminar or other forum, and, where appropriate, must provide copies of the presentation, papers etc. to the Director of the Cancer Epidemiology Centre.
Additional funding agencies should also be acknowledged if this is applicable. The acknowledgement may refer to any other persons who have provided comments, advice, support or other input into the paper, who are not already listed as authors. Permission should be sought from these persons before including their names.
- Participant involvement
Before every pilot and every mail survey all of the participant comments from previous surveys are reviewed. The pilot surveys include an evaluation survey, as well as open ended responses which are taken into consideration when formulating the main survey. Thus participants have the opportunity to comment at every survey and in that sense are heavily involved in survey development. Additionally, the ALSWH provides participants with a free call 1800 telephone number, email and social media channels for interaction with the research team. All concerning comments made in surveys by participants are followed up with a personal phone call from the research team. More information on recruitment methods is provided here.
- Ethical clearance, participant consent and funding sources
Use of ALSWH research data is subject to strict ethical conditions due to the personal nature of the data collected. De-identified data are only available to collaborating researchers where a formal request to use the material has been approved by the ALSWH Data Access Committee. Details of ALSWH ethical approvals are provided here.
Please also refer to the ALSWH Data Access Committee Publishing guidelines.
- Access to research datasets
Some journals request that the datasets for the paper be published. This is not possible for ALSWH datasets; if justification is required, please use the following statement/s:
ALSWH survey data are owned by the Australian Government Department of Health and due to the personal nature of the data collected, release by ALSWH is subject to strict contractual and ethical restrictions. Ethical review of ALSWH is by the Human Research Ethics Committees at The University of Queensland and The University of Newcastle. De-identified data are available to collaborating researchers where a formal request to make use of the material has been approved by the ALSWH Data Access Committee. The committee is receptive of requests for datasets required to replicate results. Information on applying for ALSWH data is available from https://alswh.org.au/for-data-users/applying-for-data/.
Where linked data were also used:
In addition, linked administrative data have been provided by the following third parties [insert list of Data Custodians and HRECs*]. In order for these linked data to be accessed through ALSWH, every data user must be added to the applicable Data Use Agreements and Human Research Ethics Committee protocols.
* Please contact Colleen Loos for this information