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COBALT Patient and Public Involvement and Engagement Australian Sub-Group Member

About the project and the involvement opportunity

Australian researchers are collaborating on an international research project jointly funded by the United Kingdom’s National Institute for Health Research and Australia’s National Health Medical Research Council.

People with lived experience of Parkinson’s disease, Parkinson’s Disease Dementia and Dementia with Lewy Bodies will have an important role in the conduct of the research and dissemination of the findings. A Patient and Public Involvement and Engagement group has already been established in the United Kingdom and, more recently, a subgroup in Australia. We are looking for more members to join the Australian group, in particular, people with lived experience of Parkinson’s Disease and/or Parkinson’s Disease Dementia.

About the position

The contribution will vary from month to month but is likely to include a meeting online and a task such as a document review every couple of months. There will never be any pressure to respond to any task or attend any meeting. We understand that everyone has different circumstances and skills, and no one will need to participate in every activity.

What am I expected to do?

  • Attend focus groups
  • Join the research project steering group if interested (one person or by rotation)
  • Review/design user-friendly plain English documents for use with participants and support partners including recruitment, letters of invitation, participant information sheets, consent forms, study newsletters
  • Help to develop lay material for websites and plain English summaries of study findings and publications for informing the general public
  • Visit initiation sites (when safe)
  • Assist with recruitment of study participants
  • Help to evaluate study participants’ level of satisfaction with their experience
  • Co-organise and attend stakeholder ‘end-of-study’ events

What skills or experience do I need?

  • Willingness to review documents and provide an opinion via any preferred method e.g. post, phone, online/video conferencing.
  • Enthusiasm to contribute towards the successful delivery of the project
  • Willingness to engage with the Australian and United Kingdom patient and public involvement and engagement leads/facilitators
  • Able to join video conferencing with support if needed

How long am I expected to be involved?

The study lasts approximately 4 years but researchers anticipate that members of the group will come and go as circumstances dictate. There is no expectation for group members to stay for the whole study unless they want to.

Where will meetings be held?

Meeting will be held online via generally via Zoom).

What support is offered?

*Please note: this project does not have funds for honorarium payments, and therein differs to CCIProgram Honorarium Guidelines. As a result, consumer involvement will be in a volunteer capacity.

A patient and public involvement and engagement facilitator will be available by email (or phone/video link by arrangement) and we will hold information sessions about the project as it progresses.

The training needs for the group members will be partially met by induction and mentoring of new volunteers by those who are more experienced. This will be supported by training from the research team in trial administrative and governance processes.

Support and training opportunities may also be offered by the Consumer and Community Involvement Program (optional).

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