Welcome to the Consent Toolkit - Consumer Representative Survey

Thank you for participating in our brief survey. It is expected to take you about 8 - 10 minutes to complete.

Your input is incredibly important to us. Please take some time to read this brief information before completing the questions. 
Why am I being asked to complete this survey?

As consumer representatives, we invite you to help us test a simpler and more informative approach to patient consent.

NSW Health Pathology and the Office of Health and Medical Research are working to create a new Consent Toolkit for NSW Health. The toolkit is designed to support and encourage doctors, researchers and healthcare professionals to have conversations with patients about donating samples for future medical research.  We hope it will offer easy to understand materials that help participants in health and medical research give genuinely informed consent.

For participants, we have a developed a new Participant Information Sheet as well as Consent Forms for Adults and Children. We are also creating more information for our website, posters, leaflets and films.
 
All our new materials, including the consent forms, have been written in plain English to ensure anyone being approached to donate a sample (such as blood, tissue, etc.)  are aware of the potential benefits and risks and can make a voluntary and informed decision about their participation in medical research.

Your responses are so valuable.

Your responses to the following questions will help us to deliver the best possible package of information designed to:
  • help researchers and health care professionals have more informed and meaningful conversations with their patients around consenting to donate samples for medical research, and 
  • support participants and patients with a collection of resources that will enable them to make a truly informed decision about their participation in research.
Background information: 

What is a sample?
A sample could be any of the following things, taken from your body by a health professional:
  • Blood
  • Saliva
  • Urine
  • Stool
  • Bone
  • Breast milk
  • DNA  
  • Tissue (skin, part of an organ, tumor or other cells)
Donating a sample is not part of your routine medical treatment or healthcare.

What is health and medical research?
Health and medical research aims to improve the health and well-being of people. Researchers study biological samples and health information to find ways to identify, cure and prevent disease; reduce injury and disability; improve the delivery of health services; and help us to lead healthier lives.

Samples might be used for a range of different, ethically approved health or medical research studies, now and in the future. For example:
  • research on the cause, prevention, risks, diagnosis and treatment of disease
  • for a cure or new treatment for a condition such as cancer, diabetes, dementia
  • research into genetic conditions
  • population studies, such as tracking lifestyle factors that can lead to obesity 
  • monitoring new treatments or medicines over time. 

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