From the CE’s desk: Driving change with the Insight Research Study

One year on from when our community shared their experiences and stories for the Insight Research Study, MND NZ CE Mark Leggett reflects on how this research has made an impact.

It has been a busy year since our Research Advisor and Best Practice Advocate, Dr Natalie Gauld led the data-gathering stage of the Insight Research Study, with co-researchers including two neurologists, academics and other health professionals.

I was delighted that nearly 300 people — including individuals with MND, their family carers, and bereaved family carers — shared their experiences and needs across a wide range of topics in the Insight Research survey in 2025.

While Natalie Gauld and the study’s co-researchers are currently using the results to write topic-based academic papers to publish in research journals, we are unable to share the full findings on our website, as this would severely limit the opportunities for academic publication.

We presented insights directly to our community via two webinars late last year, and since then the research has been widely used to create change in a variety of impactful ways.

Throughout our communications about the study, we promised that your insights, lived experience and data would be used to advocate for better services by highlighting unmet needs and inform health professionals to improve care and support, alongside other outcomes.

I’m delighted to share some recent highlights on how we’ve been using the research to inform health professionals and advocate for change below.

Informing health professionals to improve care and support

• Hospice NZ Palliative Care Lecture Series webinar presented by Natalie Gauld on the end-of-life experiences of people affected by MND. Ninety-four percent of the webinar attendees who completed the post-webinar survey said they would use the information to inform or develop their practice.

• Presentation on end-of-life care experiences of people affected by MND by Natalie Gauld to palliative care doctors at Australia and New Zealand Society of Palliative Medicine.

• Presentation to the Neurology Association of New Zealand (NANZ) conference by Dr Sarah Buchanan, Neurologist on Access to MND care and treatment in Aotearoa NZ: results from the MND Insight Research.

• Riluzole use paper published in the New Zealand Medical Journal. Sent to neurologists and health professionals to directly inform medical practice of prescribing riluzole and its benefits.

Advocacy for better services and policy changes

• Natalie Gauld and I met with Hon. Simeon Brown, Minister of Health to advocate for change using Insight Research data and stories. The Minister has supported our call for work to be done on a consistent delivery of health system support for people with MND. We are awaiting next steps of engagement with senior health sector leaders to advance that discussion.

• Natalie Gauld and I presented to Needs Assessment Service Co-ordination Association (NASC) leadership on care hours issues backed by the Insight Research findings. Our next step is to present to NASC assessors with the assistance of the NASC Association.
• Ongoing engagement with Accessable and Enable equipment providers regarding equipment and house modifications using Insight Research findings.
• Riluzole findings used to advocate directly with Pharmac to introduce and fund liquid riluzole (alongside the tablet form currently available) in New Zealand to make it easier for people with MND to take it.
• Consultation on the NZ Disability Strategy
• Submission to Ministry of Social Development consultation on Carer's Strategy Action Plan
• Introductory discussions with Whaikaha – Ministry of Disabled People leadership to raise awareness of specific challenges for the MND community.

As you can see, your efforts to complete the survey are doing a lot of very heavy lifting in the background, and we are honoured by your trust in us to deliver anonymised information and deeply personal stories in a way that is making a real difference.

On behalf of the Motor Neurone Disease NZ team, thank you again for your participation in what I believe is a landmark piece of work that is already creating change, and will continue to do so.

For a more detailed summary of activity related to this research, please go to this page on our website.

This research was co-funded by MND NZ, the Health Research Council and Dr Natalie Gauld.