What do Australians think about privacy and participation in health research?

Monash University’s Department of Epidemiology and Preventive Medicine is conducting this research, which has received funding from the National Health and Medical Research Council. The study team is led by Associate Professor Bebe Loff.

What is the purpose of the study?

The purpose of the study is to determine what the Australian community thinks about privacy and the use of information in health research.

Why have you been chosen?

Your telephone number has been chosen at random from all telephone numbers in your area. We find this is the best way to obtain a representative sample of all Australians for our study. We have matched your phone number with your postal address where possible using the Electronic White Pages so that we could post a letter of invitation to your household asking you to participate in our study. Alternatively, for a small number of participants, your name was chosen because you are participating in an existing health study, the HealthWatch study or the WA Bowel Health study.

What does the research involve and how much time will it take?

You will be telephoned by the Social Research Centre on behalf of the Monash University study team. You will be asked to take part in a telephone interview about attitudes to privacy and participation in health research. The phone interview will take 10-12 minutes to complete. We will invite the adult in your household with the next birthday to take part in the study.

Please call us on the freecall number 1800 023 040 if you want to tell us when you would prefer to be called, or if you wish us to call you on a particular number.

Do you have to take part?

We hope that as many people as possible will agree to take part, because this will make the findings more valid. However, you are under no obligation to participate. If you do decide to participate, you may withdraw at any stage during the phone interview or choose not to answer any questions. Choosing to not take part at all or withdrawing will not have any negative effect on you

What are the advantages/benefits of taking part?

For the first time, we will have evidence about the views of the Australian public with respect to privacy in health research. This evidence will help inform law reform activities and may lead to greater consistency in ethical decisions about health research.

Who will see the information that you give?

Information that you give as part of the telephone survey will be treated in strict confidence. The only people who will have access to the information will be the researchers associated with the project. No information will be published or presented in a form that could lead to the identification of individuals.

Storage of the data

No information will be collected which contains your name. Electronic data containing your anonymous survey responses are held on computers with password access in only offices which are kept locked out of hours and in a section of the building that is only accessible by a card key. Digital information will be stored in a computer drive that is capable of being accessed only by the study team led by Associate Professor Bebe Loff. Any hard copy will be stored in locked filing cabinets.

The information will be retained for five years after publication. After this period the information will be destroyed.

Can you see the results of the study?

Results of the study will be available on this Monash University website after the data has been analysed.

Further questions

If you would like to contact the researchers about any aspect of this study, please contact the Chief Investigator, Associate Professor Bebe Loff  by email Bebe.Loff@monash.edu
or contact the Research Fellow, Dr Claudia Slegers by email claudia.slegers@monash.edu or by telephone (03) 9903 0928.

Complaints

If you have any complaints concerning the manner in which this research is being conducted, please contact:

Executive Officer
Standing Committee on Ethics in Research Involving Humans (SCERH)
Building 3e Room 111
Research Office
Monash University VIC 3800
Tel: (03) 9905 2052
Fax: (03) 9905 1420
Email: muhrec@monash.edu

Use the following  project number 
CF09/1226 – 2009000600
You may also contact the Office of the Australian Information Commissioner:

GPO Box 2999 Canberra ACT 2601
Call 1300 363 992 (local call cost)
Email: enquiries@oaic.gov.au