The 45 and Up Study Group

FAQs

• What is this study about?

  The 45 and Up Study is a long-term health study of men and women aged 45 and over living in NSW. It is the largest follow-up study ever undertaken in Australia.

  Information gathered by the Study will assist researchers in their efforts to improve prevention and treatment of the main health problems people face in later life, including cancer, heart disease, diabetes, mental health problems and musculoskeletal disease.

  Because of the size and comprehensiveness of the Study, findings will be of national and international importance.

• Why do the study on people 45 and older?

  Australia, and particularly NSW, is experiencing an ageing boom. In fact, the number of Australians aged 65 and over is expected to increase by around 50% in the next 15 to 20 years.

  The focus of the study is to promote healthy ageing, thereby improving and maximising the quality of life of Australians in the coming years. Your participation will ensure that the best possible information is available to help you and future generations enjoy the best health possible.

   

• Why do the study in NSW?

  This study needs as wide a range of people aged 45 and over as possible to join it and will draw from the unique diversity of the NSW population. We need men and women from all walks of life, all social and ethnic backgrounds, all lifestyles and interests to take part.

• What will researchers be looking at?

  The Study will follow the health of study participants to examine which factors are associated with good or poor health as people grow older.

  Initially the focus will be on the risk factors for, and burden of, common diseases and health conditions that affect us when we get older, including cancer, obesity, arthritis, depression, cardiovascular disease and diabetes. In addition, the Study will look at social, economic and environmental issues that affect health, such as rural/urban differences, retirement and ethnicity, and issues affecting the wellbeing of people aged 80 and over.

• Why do you need so many people to participate?

  The goal is to establish a group of 250,000 men and women aged 45 and over across NSW, representing around 10% of the NSW population in this age group. This large number and age range of participants will enable researchers to gather detailed information about the factors that are most commonly responsible for illness and premature death among older Australians.

  A study of this size is also more cost-effective than running many smaller separate studies. Because of its design, the Study will be able to answer a wider range of health questions, including urgent questions that were not foreseen at the time of starting the Study. It will also be able to look carefully at the risks and benefits of a range of different factors, including lifestyle.

• Have there been any other studies like this?

  Researchers have learned a lot about ways to improve health from large-scale follow-up studies like this one, some involving hundreds of thousands of individuals. These studies have contributed to our understanding of factors that might cause or prevent diseases such as cancer, heart disease and diabetes.

  The 45 and Up Study is the first large-scale study of this kind in Australia. There have been other studies like this done in other countries such as the UK Million Women Study and the US Cancer Prevention Studies.

• How will you guarantee information is kept confidential?

  The 45 and Up Study is bound by Commonwealth and State privacy legislation.

  All information collected will be treated with absolute confidentiality and used for health research only.

  No information will be released in a way that would enable an individual or household to be identified, except as is required by law. Information gathered will be stored, analysed and reported on with all individual identifying details removed to ensure total security, confidentiality and anonymity.

  In addition to meeting Commonwealth and State legal requirements, the Study is overseen by an independent Strategic Advisory Committee and the University of NSW's Human Research Ethics Committee to guarantee complete security, confidentiality and anonymity of participants.

• What if I want to withdraw from the Study at some time in the future?

  If you have already completed the baseline questionnaire but no longer want to participate you can withdraw at any time. Your decision regarding participation will not affect your health care or disadvantage you in any way.

  There are two types of withdrawal from the Study:

  1) No further contact

  If you decide that you do not want to be contacted again by the Study but are happy for the Study to use information already provided for research, including continuing to have your information linked to routine health records, please call the Study Infoline on 1300 45 11 45 and make a request of "no further contact" from the Study team or send an online request with your name, date of birth and contact details by clicking here.

  2) Complete Withdrawal

  If, for any reason, you would like to completely withdraw from the Study - meaning you will no longer be contacted and your health will no longer be followed, please call the Study Infoline on 1300 45 11 45 or send an online request with your name, date of birth and contact details by clicking here.  Withdrawal will apply from the time you withdraw from the Study onwards, as it is not possible to withdraw information that has already been used for research or publication.

• Who can access the Study information and how?

  No information held by the 45 and Up Study will be released in any way that would enable an individual or household to be identified. Any information gathered is stored with all individual identifying details removed to ensure total security, confidentiality and anonymity. Personally identified information that the Study holds will only be released with your consent or as required by law.

  Researchers providing advice to the Study do not have any direct access to information the Study collects from questionnaires or from sources of routinely collected health information.

  To access any Study information all researchers, including the founding collaborators, must get approval by going through a rigorous process. They must prove that their proposed use of the Study information is credible and also must seek approval from independent ethics committees, review by other experts and the Study Access Committee.

  Only after successfully meeting all these requirements will a researcher be able to access Study information and once their research is finished they will destroy their copy of the information.

  All staff working on the Study sign confidentiality agreements and follow strict protocols and procedures to ensure the data and information is protected. All Study data is located in an area within a security building where access is restricted only to Study staff.

• What type of health information does the 45 and Up Study link to?

  As part of the 45 and Up Study, information from the questionnaire will be linked to already routinely collected health information on people participating in the study. This includes information on your current, past and future health and treatments and procedures, including the health services that you use. By using all available sources of information we will be able to better understand the factors influencing health and health needs in the wider community.

  There are a number of sources of health information that may be used to help us answer different research questions and of course, if they contain any details that could identify you these will be removed before being given to researchers. Details about research underway in the 45 and Up Study is available here or you can always ring the Infoline on 1300 45 11 45.

  The availability of this type of health information for use by researchers is unique world-wide and means that Australia will be able to contribute new and important knowledge on a broad range of health issues.

  Health records that may be used in the 45 and Up Study include:

  • admissions to hospital, information on injuries, infectious diseases, radiotherapy and mental health services and hospital waiting times from NSW Health.
  • use of emergency department services, from NSW Health. 
  • midwives and birth data, from NSW Health.  
  • disability information, home and community care, and use of aged care facilities, from NSW Health the Department of Health and Ageing, and the Australian Institute of Health and Welfare (AIHW).  
  • enrolment details, (information such as your name, address and date of birth) from Medicare Australia.  
  • information about Medicare claims, from Medicare Australia. 
  • vaccination information, if in the future it is recorded for adults, from Medicare Australia.  
  • information about dispensing of medicines subsidised under the Pharmaceutical Benefits Scheme, from Medicare Australia and Repatriation Pharmaceutical Benefits Scheme.  
  • information on health and health services paid for by the Department of Veterans’ Affairs (DVA) data.  
  • information about home care facilities and services paid for by the Department of Veterans’ Affairs (DVA). 
  • information on use of subsidised hearing services, from Medicare Australia.  
  • use of ambulance services data, from Ambulance Service NSW.  
  • cancer registrations, from the NSW Cancer Institute and the Australian Institute of Health and Welfare (AIHW).  
  • death records, from the NSW Registry of Births, Deaths and Marriages and the National Death Index.  
  • information on licences issued and accidents, from the Roads and Traffic Authority.  
  • breast, cervical, prostate and bowel cancer screening records, from a range of services. 
  • information on dialysis and transplants, from the Australian and New Zealand Dialysis and Transplant Registry.