Incorporating lived experience into research
Putting data and care decisions into the hands of consumers has an empowering effect beyond better decision making. This particularly applies for our disabled citizens.
In Aotearoa New Zealand, little data has been collected and analysed to show how disabled people use and access disability services, and the associated outcomes. In fact, many individuals and minority groups with disabilities can pass through the health system unnoticed.
To help better understand New Zealanders who receive Individualised Funding (IF) for disability services throughout Aotearoa, Precision Driven Health supported Manawanui – the leading facilitator and largest individualised funding host provider in Aotearoa – and Nicholson Consulting in late 2020 to undertake research, including a segmentation analysis for Manawanui.
This research partnership – which aimed to assist Manawanui in its mission to empower people through improved services – has featured strong contributions from people with lived disabilities.
This includes Dr Huhana Hickey, a Māori human rights and disability lawyer who lives with multiple sclerosis. Dr Hickey advised Manawanui on the research project, bringing her lived experience to contribute to understanding how services can better empower disabled people.
Dr Hickey is the first Māori woman and first disabled person to complete a PhD in law at the University of Waikato, and is a Manawanui client herself. She explains that it’s not uncommon for disabled indigenous people in New Zealand to suffer from social exclusion and discrimination.
“This is why I was able to look at different ethnicities that sit on the outside and figure out how we can bring them in because they often miss out.”
Māori are underrepresented in disability data and so they aren’t accessing disability services as effectively as they could be. This research is a step in the right direction toward improving the services and access to health services for disabled communities and minorities.
According to Dr Hickey, no transformative change can take place until data was obtained to understand the current statistics in place: “We need to have data on current statistics simply for that reason, so we can explain ‘why is this higher’ or ‘why are these lower’ and then we can find solutions.”