Patient Voice Initiative (PVI) in collaboration with Community and Patient Preference Research (CaPPRe) are conducting research with people involved with health consumer organisations and online patient communities.

These kinds of patient groups range in size and scope, and may include:

• Patient representatives and patient advocates
• Patient advisory group or patient support group
• Health consumer organisations such as not-for-profits for a specific condition
• Online patient communities or forums

The aim of this research is to understand what is important to you in your interactions with pharmaceutical companies and determine how the pharmaceutical industry can enhance collaborative engagement with you. This information will be used to create a tool to measure and improve how all healthcare stakeholders collaborate, in an effort to foster patient engagement.

An online survey, which should take approximately 20-25 minutes. The survey will be available around June-July.

In appreciation for your time and participation, you will receive a $50 gift card.

You will have the option to donate this to a health consumer organisation or online patient community.

There is no obligation for you to be involved in this research, and if you decide to participate, you may withdraw at any time. All responses will be recorded throughout participation. While you can withdraw by no longer completing or skipping questions, data from questions already completed will be kept for record-keeping and analysis.

CaPPRe respects and understands your privacy is very important. We ask you for some information about yourself and the health consumer organisations or online patient community you are involved with. Personal information that can identify you will remain confidential and will be stored by CaPPRe in a secure encrypted (protected) environment in Australia.

In any publication and/or presentation of the findings of the research, information will be provided in a combined form such that no individual person or group can be identified.

Community and Patient Preference Research Pty Ltd (“CaPPRe”, ABN 68 610 716 197) respects and upholds your rights under the Australian Privacy Principles (“APPs”) contained in the Privacy Act 1988 (Cth) (“Privacy Act”). CaPPRe also adheres to the Privacy (Market and Social Research) Code 2014 (“Code”). For more information about the Privacy Act, the APPs and the Code visit http://www.oaic.gov.au.

You can read more about our Privacy Policy on our website http://www.cappre.com.au/PrivacyPolicy.

If you have any questions or concerns, you can contact CaPPRe at ellie.morris@cappre.com.au.