Why InforMS?
Melissa Quirk
People with MS often see multiple healthcare professionals. There are MRIs, symptoms that can come and go, changes to medications, new specialists and test results. It’s a lot to keep track of, especially if you also have MS fatigue and brain fog.
In 2020, an Australian team began developing an MS management app called InforMS.
InforMS is designed to help people manage their MS, creating a “one-stop shop” to hold their health information.
It will allow people to track their MS and their healthcare more easily, to help make shared decisions with their healthcare team.
InforMS is in the final stages of development by researchers at the Menzies Institute for Medical Research in partnership with MS Australia, Monash University, Healthcare Software, healthcare professionals and most importantly, people with MS.
By people with MS, for people with MS
People with MS have been embedded in the development of InforMS from the very beginning, and throughout the design and test
We spoke to Melissa Quirk and Sonia Marcon about how they helped shape InforMS and why they love it.
Melissa is a busy marketing professional, travel enthusiast and vocal advocate for MS research, who has lived with MS for eight years.
Melissa was part of initial focus groups and user testing and is a member of the Steering Committee, which guides the overall direction for InforMS.
She loves that people with MS were integral to the design from the beginning.
“You really need to think about the person with MS using it. Are they going to like the look and feel of it, the functionality, is it easy to use?”
“Nothing about us without us” – Sonia
Sonia Marcon
Sonia is a singer, actor, theatre professional, and proud performer with disability. Sonia was diagnosed 21 years ago and lives with relapsing-remitting MS.
“MS is not just a medical condition, it is a way of life because many changes occur, so adaptation is necessary,” said Sonia.
As part of the InforMS focus group, Sonia advised the team on what was important to her in an MS management app.
She also tested InforMS throughout the build.
“A service or product might be considered user friendly, but it might not be MS-user friendly”.
“Even with the best of intentions and medical input, products developed without the voice of those with lived experience of MS have no guarantee of benefit.
In the MS community, we often say, ‘Nothing about us, without us.’
InforMS has been a great success in this regard.
By working directly with those who have MS, InforMS is specifically tailored in every way.
From content to accessibility to results, InforMS will change the way information is gathered, stored and shared.”
InforMS – “so simple, but it will be a godsend”
Melissa discussed the administrative load of a chronic condition –
“When you manage something like MS, you need to be organised.”
“I went to see a rehab specialist last week. They wanted to know the name and email of my physio and my exercise physiologist. Do you think I could find any of those things quickly in my phone?”
InforMS keeps all the details of your healthcare team in one place.
“It’s so simple, but it will be a godsend”, said Melissa. “Having the My Care Team feature will be so handy, because I really like my doctors to be talking to each other.
InforMS can also store your medical results, medication history and notes.
Melissa said, “I can always remember when I was diagnosed, but I can’t remember exactly when I switched from Tysabri to Ocrevus, and that’s something you get asked all the time”.
Having been involved in user testing for other MS management apps in the past, Melissa says, “I found with other apps there were too many gaps. They were good for some things, but I still had to keep other notes separately. With InforMS, all of my notes and documents are in one place. I can take a photo on my phone, and it’s all sorted.”
Easy tracking
InforMS tracks MS symptoms and displays them over time.
Melissa said, “I like the ease of the questionnaire because I don’t have to think of all the things- they are just there for me.”
“I think my favourite part of the system is the graphs [of MS symptoms] because I can look back and easily see how things are tracking in a visual way, and that resonates with me”, she added.
You can also graph test results from My Health Record, and import data from wearables, fitness apps, an MS clinical database (MSBase) and the Australian MS Longitudinal Study (AMSLS).
You can use InforMS on-the-go on your phone, tablet, or desktop in the comfort of your home.
InforMS is coming soon
InforMS will be launched in mid-2024.
People with MS will be invited to use InforMS as part of a two-year research study to test whether it is helpful and effective for MS management.
The research study will be conducted through the AMSLS, and all AMSLS participants will be invited to join the study.
To be eligible for InforMS, people will need to join the AMSLS, or be existing members.
Pending outcomes from the research study, the hope is to be able to make InforMS accessible to everyone with MS in Australia.
Research is hope
Data collected in InforMS will allow people with MS not only to understand their MS better but also to be part of a deidentified bank that researchers can use to answer questions about MS down the track.
Melissa: “For somebody with MS, some days can be hard, but you really want to find things that give you hope, and I think that’s what the research space does.
If there’s no hope, there’s just fear of what might happen. But it’s from research we can learn new things, and it always has a positive spin on it.
And being a part of that is rewarding, and you feel like you’ve done your bit.
When you have MS, there’s an awful lot that you can’t do to change the circumstances. But to have something that you CAN do to contribute to the space feels really good”.
To find out more about InforMS or the AMSLS, or to join the AMSLS, please contact the team at AMSLS.info@utas.edu.au.
MS Australia is proud to be co-funding the development of InforMS as part of a 2019 National Health and Medical Research Partnership Grant (NHMRC Grant ID 1193008*).
*According to NHMRC rules, we hereby acknowledge that “the contents of the published material are solely the responsibility of the Administering Institution, a Participating Institution or individual authors and do not reflect the views of NHMRC.”
