Online survey: Experiences of health testing and screening

You are invited to take part in this study. Please read this Explanatory Statement in full before deciding whether or not to participate in this research. If you would like more information about any aspect of this project, please contact the researchers via the phone numbers or email addresses listed below.

Principal investigator
Professor Alan Petersen
Department of Sociology
Tel: (03) 9905 5508
Email: alan.petersen@monash.edu
Research fellow and project coordinator
Dr Kiran Pienaar
Department of Sociology
Tel: (03) 9903 4776
Email: kiran.pienaar@monash.edu

What does the research involve?
This study explores the use of testing in healthcare. This includes imaging tests like X-rays, mammograms, scans, ultrasounds and lab tests like blood tests, whether they are used in population screening programs or in diagnostic testing in clinical practice. We know little about what drives expectations for particular tests and for testing in general. More specifically, we have limited understanding of the social and cultural factors that shape the use of tests. Participation in this study involves taking part in an anonymous online survey in which you will be asked about your experiences with testing and/or screening, and your views on testing in healthcare.

Who is conducting the research?
The study is an international collaborative research project being carried out by the following researchers: Professor Alan Petersen (Monash University); A/Prof Diana Bowman (Arizona State University); Dr Kiran Pienaar (Monash University); Mr Stephen Derrick (Monash University).

Who has approved the ethical conduct of this research?
This project been approved by the Monash University Human Research Ethics Committee (Approval Number 12274). If needed, verification of approval can be obtained either by writing to: The Executive Officer, Monash University Human Research Ethics Committee (MUHREC), Room 111, Chancellery Building D, 26 Sports Walk, Clayton Campus
Research Office, Monash University VIC 3800 OR by telephoning: +61 3 9905 2052 OR by emailing: muhrec@monash.edu

Who can take part?
You have been invited to take part in this study because of your expertise and professional experience in the field of healthcare testing
OR
because you are over 18 years of age and have undergone, or considered undergoing, a test for one or more of the following:
● vitamin D or vitamin B12 deficiency;
● screening test for breast, cervical or bowel cancer;
● an imaging test (e.g. ultrasound, X-ray, CT scan) for one or more conditions (excluding tests for pregnancy);
● a genetic test for one or more conditions (excluding tests for pregnancy).

Those who have been diagnosed with, or are known to have, a mental illness are not eligible to participate. The survey is designed to present only those questions relevant to you (based on your responses). Your participation is voluntary so it is completely up to you to decide if you want to take part.

Who is funding this research?
This project is funded by an Australian Research Council Discovery Grant. The researchers and funder have no conflict of interest in undertaking this research.

Can I choose not to respond to particular questions in the survey?
Some questions in this survey are mandatory for demographic analysis or survey routing. If you do not wish to respond to a mandatory question, you may choose the ‘prefer not to answer’ option. Other questions are optional and you may choose to ignore these questions if you do not feel comfortable answering them.

Can I opt out of the survey at any time?
You can opt of of the survey altogether at any time without any negative consequences. You can do this by simply closing your browser window. If you choose to opt out in this way, your survey responses will be deleted and will not be included in the study.

Are there any risks for me if I participate?
It is possible that reflecting on experiences of being tested could cause discomfort or distress. You have the right to skip any question that cause discomfort. If you become distressed during the survey you can stop by simply closing your browser window. If you require further support, please contact:
Lifeline Australia – Phone: 13 11 44
Mensline Australia – Phone: 1300 789 978
WIRE (Women’s Information and Referral Exchange) – Phone: 1300 134 130
Cancer Council’s confidential telephone information and support service – Phone: 13 11 20
Participation in the survey is anonymous and no identifying data is collected. If you include identifying details in your responses to the open-ended questions, we will remove this information so there is little risk of your identity being discovered during the research reporting process. We do not anticipate any other risks or harms to you if you participate.

Are there any benefits for me if I participate?
There may not be a direct benefit to you from participating in this study. However, your experiences and views will shed light on lived experiences of being tested/screened, and on the social and cultural factors that impact the use of healthcare testing in Australia. Moreover, your participation will contribute to developing evidence-based strategies for improving policy and practice in relation to healthcare testing.

What will happen to information about me that is collected during the study?
Submission of the online survey is an indication of your consent. By clicking the ‘I wish to proceed to the online survey’ button you are providing your permission for the research team to collect and use information you have provided for the study. Survey data will be collected using Qualtrics, which is a secure web application for building and managing online surveys and databases. Data entered into Qualtrics runs on Monash University’s servers, which provides increased security. If you provide your contact details to be interviewed, and/or to receive the project report, your contact details will be stored separately from your survey responses. This will ensure that your responses remain confidential. The material will be kept for seven years after the research has been published. At the end of this period, the data will be destroyed.

Where will the findings be reported?
Research findings may be communicated to the public or to any person or organisation approved by Monash University in any medium, including but not limited to, as part of a book, academic article, lecture, radio broadcast, conference presentation, poster, or on social and online media, for educational or research purposes. Research publications (e.g. academic articles, book chapters) will be available in both electronic and hard copy formats and you may request a copy of any publications produced from the research.

Will I be told the results of the study?
If you wish to be notified of the study findings, you can opt in by ticking the relevant box and providing your contact details at the end of the survey. We will send you the overall findings of the study in an email update with a one-page, plain-language summary, and a link to a page on the study website.

Can I tell other people about the study?
Yes, you are welcome to tell other people about the study and/or forward the survey link which is available on the study website.

What should I do if I have any concerns about the conduct of the project?
If you have any concerns or complaints about the conduct of the project, you are welcome to contact the Executive Officer, Monash University Human Research Ethics Committee (MUHREC):
Room 111, Chancellery Building D,
26 Sports Walk, Clayton Campus
Research Office
Monash University VIC 3800
Tel : +61 3 9905 2052 Email : muhrec@monash.edu Fax : +61 3 9905 3831

Thank you,
Professor Alan Petersen

I have read the above Explanatory Statement and confirm that I wish to participate in the online survey. I wish to proceed to the survey.