Most Significant Change Story Collection Participant Information and Consent Form

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) remains committed to monitoring the collaborative implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan). The Action Plan is the first nationally coordinated effort to address rare diseases in Australia.

As part of this ongoing work, RVA is seeking expressions of interest from a range of rare disease stakeholders willing to take part in an online interview to share stories of change on behalf of their community, group/organisation, practice or institution. These interviews are a key step in a qualitative monitoring and evaluation technique known as the Most Significant Change methodology.

What is the Most Significant Change methodology?

The Most Significant Change (MSC) methodology is a qualitative participatory monitoring and evaluation technique that is widely used to capture information, in the form of stories, across diverse stakeholder groups to assess the performance of programs and their impact. The MSC methodology is an excellent tool for capturing planned and unplanned outcomes, lessons for continuous improvement and identifying gaps.

How is Rare Voices Australia using this methodology?

MSC methodology has been identified by Rare Voices Australia (RVA) as a suitable tool for assessing the collaborative implementation of the Action Plan and understanding the broader impact of activities, outputs and outcomes across the rare disease sector.

How can you help?

RVA is inviting rare disease stakeholders to share stories, experiences and case studies about significant changes in their community, organisation, practice, institution or broader rare disease sector since the launch of the Action Plan in 2020.

Your stories and information will be shared with RVA personnel to identify stories of most significant change. Your stories will be used to:

  • Understand the impact of activities, outputs and outcomes across the rare disease sector
  • Identify gaps or persistent problems across the rare disease sector
  • Inform a public report that will share broad areas of most significant change and highlight gaps that require prioritisation. You may choose to remain anonymous in reporting.

Who can I contact if I have any questions?

If you have questions, please contact RVA’s Research and Evaluation Manager at [email protected].

Most Significant Change Story Collection Participant Information and Consent Form

Stakeholder group (please select all that apply):(Required)
By signing this form, I (the participant) acknowledge and understand that my story will be used to inform a public report that will share broad areas of most significant change and highlight gaps that require prioritisation and cannot be changed after publishing. I consent to the following:
  • Participating in an interview with RVA staff to share a significant change story, which will be used to inform assessment of activities, outputs and outcomes across the rare disease sector. Consent to participate in the interview can be withdrawn prior to the interview.
  • For my story to be shared with other RVA personnel
  • De-identified details of my story may be shared publicly, including in reports, presentations and in RVA newsletters/social media
    • If my story is selected to be shared publicly, I (the participant), would like:(Required)
    I acknowledge and understand that if my story is selected to be shared publicly:
  • I will be given an opportunity to review and approve the written draft of my story prior to publication
  • I will need to submit any requests for changes to the draft of my story by the deadline provided. No changes can be made after this deadline