People with lived experience Survey – Engaging with Research

Changing context of MND research

The resources and support for MND research have expanded considerably over the last few years both in Australia and internationally. In Australia, the entrance of Neale Daniher and FightMND into the MND research scene, in addition to the established presence of MND Research Australia, has resulted in a momentum in the MND research space that has never been seen before. Significant increases in investment has enabled the building of research resources, infrastructure and enhanced research capacity, particularly in the clinical research space.  

A new ‘collective’ approach

To ensure that the MND community continues to benefit maximally from these changes, MND Research Australia and FightMND are jointly hosting the first ever Australian National MND Research Summit, designed to 'mobilise a collective approach to research that enables better outcomes for people living with MND'.  The aim of this Summit will be to:
  • ensure research efforts best serve the needs of the MND community,
  • plan how we can work together to maximise the impact of our investments effectively and efficiently,
  • define how the lived experience voice is prominent and plays a leading role at all stages of research and how people living with MND and their loved ones would like to participate in research and other engagement / leadership opportunities.
The Summit will have representatives from the MND lived experience community, researchers across the research spectrum, medical practitioners, allied health practitioners and the pharmaceutical industry, as well as research funding organisations. 

People with lived experience

The MND lived experience community includes anyone that is or has been connected to MND including people living with MND, their families, friends and carers as well as professional medical and care providers, researchers, patient advocacy groups and MND organisations. As a person with lived experience, your unique experience can provide vital insight into how to better engage with the community in future research and decision making.

Your opportunity to contribute

We are asking for Australians with lived experience of MND to participate in a short survey to ensure the community representatives at the Summit can present the views of the wider community on how you would like to be engaged in research and other participation opportunities.  This survey complements the work done in the 2017 MND Australia survey which understood the MND community’s perspective on research priorities. These outcomes formed the basis of MND Australia’s current Research Strategy and also aligns closely with FightMND’s Research Strategy and objectives.  Our intention is that the forthcoming Summit will provide clear and improved pathways and frameworks to best direct our resources to fast-track advancement in these areas of priority, details of which can be found here). 

Over and above research priorities, we are also interested in how you would like to be engaged in research and other participation opportunities and are therefore asking you to complete the survey attached to this email. We are asking 9 key questions to obtain your insights into your thoughts and experiences of MND research by Friday 23rd October.

All responses to the survey will be kept confidential and we will not be requesting any identifiable information beyond your geographic location (state-level) and your connection to MND. Outcomes from the survey will be collated in a report with no information/commentary assigned to any single individual.


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* 2. Where do you call home? (Accessibility Remoteness Index Australia)

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* 3. How are you connected to MND lived experience? Please choose most appropriate answer

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* 4. What level of involvement have you had with MND research previously?

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* 5. How would you describe your experience?

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* 6. How would you like to see MND research improved?

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* 7. How would you like to be involved in progressing MND research outcomes? (select as many as relevant)

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* 8. How important is it for you to be involved in research? (please rate from 1 - 10, with 1 being not important and 10 being extremely important)

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i We adjusted the number you entered based on the slider’s scale.

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* 9. Please provide details on your rating of the importance of being involved in research.