A key objective of the MAA is to support research. Making and maintaining contact with sufferers is a key strategy in attracting research opportunities. Evidence of our effectiveness in reaching extensively into the Australian MG community will show over the coming months as several research projects potentially come on line. The direction of the current research discussions very much involves on-line questionnaires.
It is critical that we, as a community, embrace the on-line survey approach to learning more about MG. If a significant patient response occurs, the data becomes very useful and has the potential to lead to more detailed projects with closer patient contact. It is felt that the MG community are to be ‘tested’ over the coming months and the MAA Board is hoping for overwhelming feedback to researchers that we are indeed very interested in advancing our care.
There is a significant sector of the MG community who do not access on-line services. In flagging this issue with the researchers, they cannot provide an alternative method so it is up to the MG sufferers to be very active in finding ways to participate. This may mean asking family, friends or local library staff to assist. For these one-off opportunities, it is important that people with MG please make every effort.
The current research project explores Allied Health services. It is felt that the services are under-utilised when it come to the MG patient group. This survey aims to identify the extent of this issue and as a consequence to foster conversations for better patient care. The MAA hope you will engage with this worthwhile project and we very much thank the researchers at the University of Qld Physiotherapy Department for their interest.