MND Australia identified the need for a national web based ‘one stop shop’ motor neurone disease information website to facilitate and promote best practice care and support for all people with a diagnosis of MND in Australia especially in regional, rural and remote areas.
In November 2009 MND Australia received funding from the Australian Department of Health and Ageing for the Living Better for Longer Project.
Living Better for Longer Project Outline
Living Better for Longer: facilitating a coordinated multi/interdisciplinary approach to MND Care in Australia through ‘one stop shop’ e-resources
Objectives
To support health and community professionals to assist people living with motor neurone disease to live better for longer through the provision of easily accessible, comprehensive, up to date and evidence based or best practice online information to address the needs and symptoms related to MND.
Aims
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To design, develop and promote a national web based ‘one stop shop’ MND information website to facilitate and promote best practice, coordinated multidisciplinary MND care, timely interventions and appropriate referrals for all people with a diagnosis of MND in Australia especially in regional, rural and remote areas.
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To facilitate the use of existing latest evidence for best practice care to assist people living with MND to live better for longer.
Development
The project was developed by a team of people experienced in MND care and the needs of people living with MND. Development commenced in November 2009 and the MNDcare website went live on 21 June 2010.
Steering committee
Carol Birks - Project Manager, National Executive Director, MND Australia
Rod Harris - CEO, MND Victoria
Graham Opie - CEO, MND NSW
Penny Waterson - Project Officer, Information Resources Coordinator MND NSW
Expert review panel
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Dr Peter Allcroft, Respiratory and Palliative Care Physician, Southern Adelaide Palliative Care Services, Repatriation Hospital MND Clinic, MND SA board member, South Australia
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Jennene Arnel – MND Victoria/Tasmania Regional Advisor, Tasmania
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Bronwyn Binnington, Occupational Therapist, Clare Holland House Hospice, ACT
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Sara Feldman, Physical Therapist MDA/ALS Center of Hope Drexel University College, USA
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Professor Matthew Kiernan – Neurologist, University of NSW, Prince of Wales Hospital MND Multidisciplinary Clinic, NSW
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Maryanne McPhee, Speech Pathologist, MND Centre, Calvary Health Care Bethlehem, Victoria
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Nicole Hutchinson, Clinical Nurse Consultant, Royal Brisbane and Women’s Hospital MND Clinic, Queensland
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Margherita Nicoletti, Palliative Care Physician, WA Neurosciences network and WA MND Model of Care, MNDWA board member, Palliative Care Australia, Western Australia
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Heather Wieland, National Rural Health Alliance and National President of the Country Women's Association of Australia
Web developer
Following a Request for Proposal process involving reviewing five proposals received, rocksolid web developers were engaged to develop the MNDcare website.