Worldwide: A coherent, coordinated international research effort. What has been established beyond doubt by previous MS research across the planet, from the first time MS was identified, and what remains to be known? What possibilities has previous research eliminated? What is the research attempting to achieve - cure or indefinite treatment? How will duplication of effort be avoided? How will national research advantages be used to best effect? Who will take responsibility for collating the research and getting up-to-date information in one authoritative place (in a plain language format) to practitioners and patients wherever they may be on the globe, on a yearly basis or better?
Nationally (Australia) A coordinated, patient - driven, results oriented research effort. How will Australia contribute coherently to an international research effort, and use national research advantages to best effect? How can research models be focused on what is going on in the bodies of real humans with active disease? How can research models be focused on tangible results, and in a plain language format?
Who will take responsibility for ensuring collated international research is acknowledged and pursued nationally, with the goal of maximising patient outcomes?
Is there a role for a national neurological hospital that specialises in MS, and patient-driven, observational, investigational, individualised, holistic, residential, whole of life care with a view to maximising health and quality of life in all dimensions, in the prevention, diagnosis, treatment, rehabilitation and management of MS?
Locally - (State and Territory level): Individualised medicine at the point of need. What would MS care look like across the country, if practitioners worked to patient - defined best practice models, so that patients could be guaranteed a minimum standard of care wherever they may reside? How would patient care be revolutionised if research - aware, observational, investigational, individualised, holistic, whole of life care became the normal model across the country?
Multidisciplinary, genuinely team based care, with care coordinators who work solely with MS patients on individual outcomes.
Is there a role for a patient association, organised and run by people with MS and their families and carers, to ensure their voices are the primary consideration in how they are diagnosed and treated, how their disabilities are managed and supported, where and how research funding is spent, and the direction that research should take?
What might be missing - pre diagnosis
Nationally (Australia) A coordinated, patient - driven, results oriented research effort. How will Australia contribute coherently to an international research effort, and use national research advantages to best effect? How can research models be focused on what is going on in the bodies of real humans with active disease? How can research models be focused on tangible results, and in a plain language format?
Who will take responsibility for ensuring collated international research is acknowledged and pursued nationally, with the goal of maximising patient outcomes?
Is there a role for a national neurological hospital that specialises in MS, and patient-driven, observational, investigational, individualised, holistic, residential, whole of life care with a view to maximising health and quality of life in all dimensions, in the prevention, diagnosis, treatment, rehabilitation and management of MS?
Locally - (State and Territory level): Individualised medicine at the point of need. What would MS care look like across the country, if practitioners worked to patient - defined best practice models, so that patients could be guaranteed a minimum standard of care wherever they may reside? How would patient care be revolutionised if research - aware, observational, investigational, individualised, holistic, whole of life care became the normal model across the country?
Multidisciplinary, genuinely team based care, with care coordinators who work solely with MS patients on individual outcomes.
Is there a role for a patient association, organised and run by people with MS and their families and carers, to ensure their voices are the primary consideration in how they are diagnosed and treated, how their disabilities are managed and supported, where and how research funding is spent, and the direction that research should take?
What might be missing - pre diagnosis