Information for participants
Diabetes Risk Factor Survey
The Diabetes Risk Factor Survey is for participants in the 45 and Up Study. The survey is part of a larger study of access to best practice primary health care for older Australians with diabetes.
The Diabetes Risk Factor Survey aims to identify how Australians manage risk factors for diabetes and cardiovascular disease and how these impact on their health and wellbeing.
The Diabetes Risk Factor Survey is funded by a National Health and Medical Research Council Project Grant.
Who is conducting the Diabetes Risk Factor Survey?
The Diabetes Risk Factor Survey is being undertaken by a team of researchers led by Associate Professor Elizabeth Comino from the Centre for Primary Health Care and Equity, University of NSW.
To ensure confidentiality, the 45 and Up Study Coordinating Centre at the Sax Institute has invited selected 45 and Up Study participants to take part in the Diabetes Risk Factor Survey.
What does the Diabetes Risk Factor Survey involve?
Participation in the Diabetes Risk Factor Survey involves completion of a questionnaire about your health. The questionnaire seeks information about cardiovascular disease and diabetes, and use of health services for preventive and treatment purposes and management of these conditions.
Permission is also requested to link the information collected in the Diabetes Risk Factor Survey with information already provided to the 45 and Up Study.
How is the invitation to participate accepted?
If invited participants choose to take part in the Diabetes Risk Factor Survey, we ask that they complete the confidential questionnaire enclosed with their invitation and sign the consent form on the last page of the questionnaire, which will allow the 45 and Up Study to release the information to the researchers. Questionnaires are then returned to the 45 and Up Study in the provided reply paid envelope.
Participants who complete the questionnaire and sign the attached consent form will be included in a prize draw for one of four $50 store vouchers.
How much time will participation take?
The questionnaire will take about 20 to 30 minutes to complete.
How will the information be used?
All information collected will be used only for approved research projects, to investigate factors affecting the health of Australians in mid to later life.
All research projects must demonstrate that they are in the public interest and have the potential to provide important information to improve health.
The information collected by the Diabetes Risk Factor Survey will be linked to health information already given to the 45 and Up Study and to information from health and other records that the 45 and Up Study has permission to access. These include NSW hospital records, cancer records, Medicare and other records (call 1300 45 11 45 or see http://www.45andup.org.au/faqs.aspx?page=participantsandthecommunity for more information).
How do participants know their information will be treated confidentially?
The 45 and Up Study is bound by Commonwealth and State privacy legislation and guidelines, including the Health Records and Information Privacy Act and the NSW Health Privacy Manual. The 45 and Up Study also has strict procedures and systems to safeguard confidentiality.
Any identifying details (such as name and address) will be removed from the information given to the Diabetes Risk Factor Survey as soon as possible and stored separately. De-identified data will be stored at the University of NSW and destroyed 7 years after the research is complete.
When the researchers talk about the study they will only use summary data. No information will be released in a way that would allow any other individual or household to be identified, except as is compelled by law.
The conduct of the 45 and Up Study is overseen by the University of NSW Human Research Ethics Committee and the conduct of the Diabetes Risk Factor Survey is overseen by the NSW Population and Health Services Research Ethics Committee and the University of NSW Human Research Ethics Committee.
By agreeing to be a part of the Diabetes Risk Factor Survey, participants agree to the 45 and Up Study providing completed questionnaires to the Diabetes Risk Factor Survey researchers.
Will individual participants benefit from the Diabetes Risk Factor Survey?
The Diabetes Risk Factor Survey aims to improve understanding of how Australians manage risk factor for diabetes and cardiovascular disease and how these impact on their health and wellbeing, however it may not directly benefit individual participants at this time.
Will anyone else know the results?
All information provided by participants in the Diabetes Risk Factor Survey will be kept strictly confidential. The results from the Diabetes Risk Factor Survey will be published in scientific journals and presented at scientific meetings. We will also include the results of the survey on the 45 and Up Study website (www.45andUp.org.au). The results of this project will also be included in the 45 and Up Study’s participant newsletter.
All results will only be presented in a combined and summarised format and could not identify or be linked to any individual or household.
Can participants tell other people about the 45 and Up Study and the Diabetes Risk Factor Survey?
Yes, do talk about the survey. Please note, however, that the Diabetes Risk Factor Survey was only sent to people who have already joined the 45 and Up Study.
What if an invited participant doesn’t want to take part?
Participation in the Diabetes Risk Factor Survey is entirely voluntary. If a participant does not wish to take part, they need take no further action.
Can participants withdraw from the Diabetes Risk Factor Survey?
Participation in the Diabetes Risk Factor Survey is completely voluntary. Participants do not have to take part if they don’t want to and, if they do take part, they can withdraw at any time by calling the 45 and Up Study Infoline on 1300 45 11 45. Participants can decide not to join in the Diabetes Risk Factor Survey, or withdraw from it, and still remain in the 45 and Up Study.
How can I get more information?
If you would like to know more about the Diabetes Risk Factor Survey or the 45 and Up Study please call the 45 and Up Study Infoline on 1300 45 11 45.
The Diabetes Risk Factor Survey has been approved by the NSW Population and Health Services Research Ethics Committee. If you have any concerns or complaints about it, or the way it is being conducted, you may contact the Committee:
Ethics Administration
NSW Population and Health Services Research Ethics Committee
Tel: (02) 8374 5615
Fax: (02) 8374 3500
Email: ethics@cancerinstitute.org.au