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InforMS

Your personalised online health portal for people with MS

Imagine the convenience of having your medical results, notes and medication history in one place. With InforMS, you can enter your own health information and upload data from health tracking apps, giving your healthcare team timely and accurate information about your health and treatment plans. By bringing everything together, InforMS helps you build your health story on one easy-to-use platform.

Background

The idea for InforMS came from a national forum in 2018, when MS Research Australia brought together people with MS, neurologists, nurses, researchers, MS state organisations and industry to collaboratively shape future research directions. One of the key outcomes was to build a health portal designed around the needs of people with MS.

The development of InforMS began in 2021, and in mid-2025 it was launched to approximately 2,500 participants of the Australian MS Longitudinal Study, as part of a two-year research study to examine its uptake, usability and impact on health.

What features does InforMS have?

InforMS puts you in control of your health data. You decide what to track, what to share, and how to use it to support your care.

Key features:

  • Connect your health data – Link information from apps like FitBit, MyFitnessPal and My SymptoMS. Personal survey responses from the Australian MS Longitudinal Study can also be viewed. Links with neurology clinic records (via MSBase), and the Australian Government’s My Health Record are under development.
  • Track your health and lifestyle factors – Symptoms, lifestyle habits, treatments and other health outcomes can be tracked directly in InforMS, with monthly reminders sent encouraging regular updates through short questionnaires.
  • See your health timeline – Log key events like appointments or MRIs (and related documents like scans, reports or referral letters) and view them on a timeline.
  • Share with your care team – Selected health data can be shared with your care team, including a snapshot of current health status and visualisations of changes over time.
  • Set goals and track progress – Use connected apps to set health goals and see your progress.
  • Keep your care team contact details handy – Contact details for your care team can be saved in one place, with options to call or email directly.
  • Access trusted MS resources – Find reliable information, news, tips, and invitations to participate in research, curated by the InforMS research team.

How will InforMS advance healthcare for MS?

This digital webpage-app, accessible on computers, tablets and phones, aims to create a paradigm shift in MS self-care, clinical care and research through:

  • Impact on self-care: Having your health story in one place can help you make lifestyle changes and feel more confident in your care decisions.
  • Impact on clinical care: Currently, health practitioners such as neurologists, MS nurses and allied health professionals lack frequent data to detect the effectiveness (or lack thereof) of your MS treatments. When you share your data with your care team, InforMS allows them to use your updates to spot changes early and adjust treatments faster. This could lead to better outcomes.
  • Impact on research: Your data is anonymously shared with researchers, helping them to understand what works best in real life, potentially benefiting you and others living with MS.

Our partners in InforMS

This project is a partnership with MS researchers at the Menzies Institute for Medical Research led by Professor Ingrid van der Mei; and at Monash University led by Professor Helmut Butzkueven, Managing Director of MSBase, the international online registry dedicated to MS research. Our IT partner is Healthcare Software.

Central to InforMS is our partnership with the MS community and individual people with MS. Consultation with people living with MS ensured InforMS was co-designed to suit the needs of the MS community. The inclusion of individuals with MS in our Steering Committee, Working Group and User Testing Group ensured that the software development process was governed by the lived experience of MS. The Steering Committee continues to provide strategic guidance, alongside a Research Advisory Group, as the project progresses through its research phase.

This research has been funded as a Partnership Project by the National Health and Medical Research Council and MS Australia (Grant ID 1193008*) led by Professor van der Mei at the University of Tasmania.

Steering Committee Members

  • Professor Helmut Butzkueven (Chair) – Head of the Department of Neuroscience, Monash University; Director of Neurology, Alfred Health; Managing Director, MSBase Foundation
  • Jose Arce – professional software development expert
  • Professor Ingrid van der Mei – Epidemiologist and InforMS Director, Menzies Institute for Medical Research, University of Tasmania.
  • Dr Tennille Luker – Head of Research, MS Australia
  • Melissa Bailey – person living with MS
  • Meaghan Osbourne – Nurse Practitioner, Royal Brisbane and Women’s Hospital; President, MS Nurses Australasia
  • Simon Jennings – Chief of Client Service Delivery, MS Western Australia
  • Dr Annie Brennan, InforMS Project Manager, Menzies Institute for Medical Research, University of Tasmania

Research Advisory Group

  • Professor Di Nicol – Professor of Law in the Faculty of Law and Director of the Centre for Law and Genetics, University of Tasmania
  • Associate Professor Vilija Jokubaitis – Senior Research Fellow and Deputy Head of the Department of Neuroscience, Monash University
  • Professor Leigh Blizzard – Biostatistician, Menzies Institute for Medical Research, University of Tasmania
  • Professor Simon Broadley – Professor of Neurology at the School of Medicine, Griffith University
  • Belinda Bardsley – Manager and MS Nurse, N-CRESS (Neuroimmunology Clinical Research, Education and Support Service), Austin Health; former President of MS Nurses Australasia
  • Dr Julie Campbell – Senior Research Fellow, Health Economics, Menzies Institute of Medical Research, University of Tasmania
  • Dr Monique Breslin – Biostatistician, Menzies Institute for Medical Research, University of Tasmania
  • Professor Bruce Taylor – Senior Principal Research Fellow, Menzies Institute for Medical Research, University of Tasmania; Consultant Neurologist, Royal Hobart Hospital.
  • Professor Helmut Butzkueven – Head of the Department of Neuroscience, Monash University; Director of Neurology, Alfred Health; Managing Director, MSBase Foundation

Working Group (concluded)

  • Jose Arce – professional software development expert
  • Guido Barbaglia – Software Engineer
  • Andrew Potter – Person living with MS; MS Australia’s Lived Experience Partner
  • Professor Ingrid van der Mei – Epidemiologist and InforMS Director, Menzies Institute for Medical Research
  • Dr Nerissa Soh – Research Coordinator, MS Australia
  • Dr Annie Brennan – InforMS Project Manager, Menzies Institute for Medical Research, UTAS
  • Dr Therese Burke, Adjunct Research Fellow, University of Notre Dame; former MS Nurse; former President of MS Nurses Australasia.
  • A person living with MS with professional experience in health information, coding systems, electronic health records and large data collections, who wished to remain anonymous.

User Testing Group (concluded)

  • Nigel Caswell – person living with MS; President of People with MS Victoria
  • Lynda Hanlon – person living with MS
  • Julee Pryor – person living with MS
  • Simone Rutherford – person living with MS
  • Fran White – person living with MS
  • Melissa Bailey – person living with MS
  • Andrew Potter – person living with MS; MS Australia’s Lived Experience Partner
  • Neale Chapple – person living with MS
  • Meg Denham – person living with MS
  • Adolfo Gianni – person living with MS
  • Chris Gumley – person living with MS
  • Sonia Marcon – person living with MS
  • And 3 other people living with MS who wished to remain anonymous.

*The NHMRC requires us to note that the views expressed by this project may not reflect those of the NHMRC.

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