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In late 2020, we commenced the development of an online MS Portal, called InforMS, to improve healthcare for people with MS. We aim to create a system that will facilitate self-management of healthcare by people with MS and shared decision making with their care team. It will enable more timely and sensitive data collection to improve clinical care and research, towards a personalised or “precision” medicine approach to MS treatment.
The vision is a Patient-Centred Health Data Portal developed and used by all key stakeholders to generate the innovations needed to advance timely treatment and care of people with MS.
The project was borne from a consultation forum held in November 2018, when MS Research Australia and stakeholders from the MS community – including people with MS, neurologists, nurses, researchers, MS state organisations and industry – gathered to formulate a research strategy to help stop and reverse MS in 10 years. From this, three critical research pillars evolved; one of which is the creation of an MS Patient-Centred Portal. This Portal has the potential to empower and activate people with MS through the management and generation of data.
We are creating an electronic health care platform where the person with MS is in charge of their own data collection and sharing. We envisage that InforMS will:
This electronic patient-centred health care system aims to create a paradigm shift in MS self-care, clinical care and research through:
Impact on self-care People with MS will be empowered with digital tools that allow them to optimise their own management of their MS. InforMS will be a “one-stop-shop” collating a person’s health data into one easy-to-access resource.
Impact on clinical care Currently, neurologists lack timely and sensitive data to detect failure or effectiveness of MS treatments. InforMS will allow people with MS to report their own outcomes and upload their own digital information (such as from smartphones and “wearables” with passive sensors). This means that treatment failures will be detected earlier and medications can be changed more quickly by neurologists. MS Nurses will have better information to triage issues, preventing escalation. Allied health professionals and care providers will have information on whether their interventions have the desired effect.
Impact on research The system will contain an option to contribute to research. It will provide a platform for people with MS to participate in clinical trials and other studies. Researchers will benefit from a platform from which they can access data from well-defined groups of people with MS who wish to contribute to research.
This project is a partnership with MS researchers at the Menzies Institute for Medical Research lead by Professor Ingrid van der Mei; and at Monash University lead by Professor Helmut Butzkueven, Managing Director of MSBase, the international online registry dedicated to MS research. Our IT partners are Atlassian and Healthcare Software.
Central to Portal development is our partnership with the MS Community and individual people with MS. Consultation with people living with MS has guided the design of the first prototype, and the lived experience of MS will continue to govern the agile software development process through surveys, community consultation forums, and membership of people with MS on our Steering Committee and Working Group. This research has been funded as a Partnership Project (2020 – 2024) by the National Health and Medical Research Council, MS Australia, Atlassian and Healthcare Software led by Professor van der Mei at the University of Tasmania.
Professor Helmut Butzkueven (Chair) – Head of the Department of Neuroscience, Monash University; Director of Neurology, Alfred Health; Managing Director, MSBase Foundation
Jose Arce – person affected by MS, professional software development expertise
Belinda Bardsley – MS Nurse and Research Manager, Austin Health; President, MS Nurses Australasia
Andrew Giles – Executive Officer, Neurological Alliance Australia
Professor Ingrid van der Mei – Epidemiologist and InforMS Project Manager, Menzies Institute for Medical Research
Dr Julia Morahan – Head of Research, MS Australia
Melissa Quirk – person affected by MS
Meaghan Osbourne – Nurse Practitioner, Royal Brisbane and Women’s Hospital; President, MS Nurses Australasia
Jose Arce – person affected by MS, professional software development expertise
Guido Barbaglia – Senior software engineer
Katrina Chisolm – person affected by MS with professional experience in health information, coding systems, electronic health records and large data collections
Andrew Giles – Executive Officer, Neurological Alliance Australia
Professor Ingrid van der Mei – Epidemiologist and InforMS Project Manager, Menzies Institute for Medical Research
Dr Fiona McKay – Senior Research Coordinator, MS Australia
Annie Brennan – Menzies Institute for Medical Research, UTAS
