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What is the research focus of the Study?
The Study will follow the health of participants to examine which factors are associated with good or poor health as people grow older. Initially the focus will be on the burden of and risk factors for common conditions that affect us as we age such as cancer, obesity, arthritis, depression, cardiovascular disease and diabetes. The Study will also look at social, economic and environmental issues that affect health, such as rural/urban differences, retirement, ethnicity, and the wellbeing of people aged 80 and over.
How representative is the cohort?
The cohort comprises more than a quarter of million NSW men and women aged 45 and over — around 10% of the State population in this age group — who have completed the Baseline Questionnaire and consented to take part in the Study. The cohort is not designed to be strictly representative of the general NSW population because a strictly representative sample would not include sufficient number of individuals from groups of interest such as rural residents and migrants. Increased participation from people aged 80 years and over and people living in rural and remote areas of NSW has been achieved by oversampling, based on population level information.
Who can access the Study and how?
Any bona fide health researcher with a proposal to use Study data who has or would likely gain approval of a properly constituted human research ethics committee, may access Study data. Researchers who wish to use Study data are encouraged to apply to the Sax Institute with details of their project via the Expression of Interest (EOI) form. You may also like to refer to our list of research projects using Study data that are currently under way and our list of published papers using Study data.
What routinely collected health information will the Study link to?
Participants have agreed to have their information collected from Study questionnaires linked to routinely collected health information including procedures and services. This is drawn from data sets such as the Medicare Australia Medical and Pharmaceutical benefits data ,the NSW Central Cancer Registry, the NSW Admitted Patients Data Collection and death registration data.
Linkage of Study data to NSW and ACT health data sets takes place through the NSW Centre for Health Record Linkage (CHeReL), which has included the Study in its Master Linkage Key (MLK). This inclusion means that linkages with any other data sets in the MLK can readily be made and updated, and made available to researchers.
Where can I find specific cohort information?
First peruse the Study questionnaires and the Study Data Books, which provide frequency distributions for most questionnaire data items. Meta data from linkable data sets are available through the CHeReL or, for Medicare Australia data, from the Medicare Benefits Schedule and Pharmaceutical Benefits Scheme.
Are follow-up questionnaire data available?
Collection of questionnaire-based follow-up data from the cohort began in late 2010, with a mailing to the first 100,000 eligible Study participants: 60,404 returned completed questionnaires as part of the research project: Social, Environmental and Economic Factors in health. This dataset is now part of the routine follow up questionnaire dataset. Wave 2 follow-up occurred as follows:
- mailing to 41,440 participants in September 2012, with a questionnaire return rate of 65% and data on over 27,000 participants being available
- mailing to 86,250 participants in November 2013, with a questionnaire return rate of 58% and data on over 50,000 participants being available
- mailing to 52,644 participants in December 2014, with a questionnaire return rate of 54% and data becoming available by the end of the year
- mailing to just over 60,000 participants in August 2015 with data still being collected and expected to be available by mid 2016.
Subsequent waves of follow-up will continue on a rolling, five-year basis beginning in 2016. Copies of the follow-up questionnaires are available.
What form does the Medicare Australia data take?
Medicare data are provided as unit record data of individual Medical Benefits Schedule (MBS) items for which subsidies are paid. A GP visit with a referral for pathology and imaging would therefore have separate records for each service for which a benefit has been paid. Item records also include some limited information about the service provider. There is no direct diagnostic information in these data, however where the item is specific to a condition it can often be derived.
Pharmaceutical Benefits Scheme (PBS) data are provided as unit record data for any dispensed item (medication) on the PBS schedule for which a subsidy is paid prior to 2012. A subsidy is paid only if the scheduled cost is higher than the co-payment required of the person for whom the medication is dispensed. The level of co-payment depends on a person’s concession and safety net status. This means that particular items may or may not be recorded depending on the price of item (which can increase or decrease), if the person’s status changes or if they reach the safety net threshold. From 2012 onwards all dispensed medications, even if there is no subsidy are included. Current information on co-payments can be found on the Department of Health and Ageing website.
What period does the Medicare Australia data cover?
The Study receives up to five years of PBS and MBS data for participants each time a request is made to the Department of Human Services. The first data set requested was for the first 103,041 Study participants and included service records from the beginning of June 2004 until the end of December 2008. Subsequent data updates have been for the entire Study cohort and cover the period from the beginning of September 2005 to the end of December 2014.
How can I determine the likely sample size of Study participants relevant to my research and/or the number of events of interest that have occurred in them?
Most of the information you need for estimating sample sizes can be found in the Study Data Books. There is also a lot of information on event rates in the published results from the Study projects. Routinely collected and published cancer data and death data, for example, will also assist in estimating event rates.