Researchers
Dr Alan Stanley; Neurologist, Hawkes Bay DHB. Dr Stanley is the Principal Investigator for this study.
Dr Braden Te Ao; Senior Health Economist, University of Auckland
Dr Tony O’Connor; Director, Point & Associates.
Dr Claire Reilly; MND NZ Community & Research Advisor. Dr Reilly is the Project Manager for this study.
Biography
Dr Alan Stanley
Alan is a consultant neurologist currently working in Hawkes Bay, New Zealand. He completed training in Internal Medicine and Neurology in Cape Town, South Africa. Alan provides clinical care for people with MND (pwMND) on a daily basis. Alan is also a council member for MND New Zealand and co-Chair of the MND New Zealand clinicians working group.
Dr Braden Te Ao
Braden Te Ao (Waikato) is a Senior Lecturer and Health Economist based in the Health Systems section of the School of Population Health at Auckland University whose interest includes access, quality, and efficiency of health care services. Braden has been involved in previously successful HRC projects in the area of stroke, brain injuries and genetic muscle disorders, and recently the NZ Dementia Economic Impact Report 2020.
Dr Tony O’Connor
Tony is the Director of Point & Associates which offers qualitative and quantitative research skills. Tony has experience working with many government and community-based health and social service providers and service users. Tony led a nationwide support needs survey for MND NZ in 2018.
Dr Claire Reilly
Claire is the MND New Zealand Community & Research Advisor. She completed her medical training at the University of Otago in 1997. Claire was diagnosed with MND in 2006 and is passionate about improving care and access to research for people with MND and their whanau. Claire is co-Chair of the MND New Zealand clinicians working group.
Current Research
This study aims to estimate the economic costs associated with the care of people with MND for future public policy making and planning. The research team aim to quantify the 1-year direct health care and indirect productivity loss, including informal care cost, of MND per capita in Aotearoa New Zealand in 2021. This cross-sectional study will identify health care and community care services resource use and out of pocket expense over the last six months. The cost of illness model will be developed using self-reported resource utilisation linked with the Ministry of Health and NZ MND Registry data.
Relationship to MND
Currently there is no information available about the health and social services people diagnosed with MND are using and the cost of these to government and to the person with MND and their whānau/family. The purpose of this study is to understand MND health care and support resource use, the financial burden to the individual and their families and whether any funding gaps exist in health care and social support for people with MND. This information will assist MND New Zealand in advocating for the needs of people living with MND in New Zealand.
Future Research Interests
To conduct a national population-based study to estimate prevalence of MND/ALS in NZ including age, ethnicity, sex, geographic location, and clinical phenotype.
Contact Details
Dr Alan Stanley email: alan.stanley@hbdhb.govt.nz
Dr Claire Reilly email: claire.reilly@mnd.org.nz
