This Participant Information Sheet and Consent Form tells you about the research project. It explains the purpose of the research, procedures and risks involved. It tells you about the sort of information you will be asked about, how that information will be used and with whom it will be shared. Knowing what is involved will help you decide if you want to take part in the research. Please read this information carefully. Participation in this research is voluntary. If you don’t wish to take part, you do not have to. If you choose not to participate, your treatment will not be affected. If you decide you want to take part in the research project, you will be asked for your consent to participate.

By consenting to participate you are telling us that you:

• Understand what you have read
• Agree to take part in the research project
• Consent to the use of your personal and health information as described

If you would like a copy of this participant information sheet and consent form to keep, you can print this screen or click here for a version you can print or save.

Purpose of the Study

Community and Patient Preference Research (CaPPRe) is working with a pharmaceutical company, Janssen, and mental health organisations, SANE, One Door and MIFA (Mental Illness Fellowship of Australia), to conduct research with people who have been diagnosed with schizophrenia.

CaPPRe are specialists in conducting research to determine people’s preferences. We are looking at ways to gather larger numbers of views from patients on what they think about benefits and disadvantages of treatments. This type of research is called ‘Patient Value Mapping’, and may be used to help those who assess new treatments understand how patients value certain benefits and disadvantages of treatments.

What’s involved?

We would like to invite you to participate in an online survey. You will be asked questions about your experience of living with schizophrenia, your experience with different treatments and your quality of life. You will also be asked to consider scenarios for different treatments and to choose which treatment option you prefer. The answers to these questions will tell us which factors are most important to you when choosing between treatments. If you decide to take part and later change your mind, you are free to withdraw at any stage. Around 100 other persons living with schizophrenia will be participating.

How long will it take?

Completing all the questions in the survey should take around 25-30 minutes. The survey has been designed to allow you to take a break approximately halfway through the survey, should you wish to do so. Alternatively, you can continue the survey without taking a break. Your participation is voluntary, and you can stop at any time.

You will receive $40 for completing the survey sincerely, which you can choose to receive via bank transfer or provide as a donation to SANE, One Door or MIFA (Mental Illness Fellowship of Australia). The $40 is paid to reflect your time to complete the survey, and all responses will be individually assessed to determine their sincerity. If we suspect fraudulent behaviour, you may be contacted to clarify some of your responses and provide further information. You will not be reimbursed if you are not eligible to participate in the survey. Survey completion is anonymous, however you will be asked to enter your email address in case we require further information from you. Additionally, if you wish to receive your reimbursement via bank transfer, you will be asked to provide your banking details. These details will be kept separate to the survey data and only used for the purpose of the one-off bank transfer.

Questions of a sensitive nature

We have considered the views of patients when designing and wording the survey. It is possible that you may find some of the questions uncomfortable. Some questions in the surveys ask questions of a sensitive nature. If you feel uncomfortable you can stop at any time. Your participation is entirely voluntary.

If you find the survey stressful and would like to seek additional support and advice, or if you have any further medical questions, we encourage you to speak to your treating healthcare professional/s.

Participating in this survey may also raise questions for you about your schizophrenia treatment. If you have any questions, you may wish to discuss them with your doctor.