The next step in Multiple Sclerosis research

I`m a neurologist with a special interest in Multiple Sclerosis. In recent years it has become apparent that a very gradual decline, with the usual clinical tools tricky to track, is a hallmark of the disease. On the other hand most our patients use smart phones producing data that could be used to track, ideally long term, trends in mobility with step counts.
How can you read out the data? What would be the best way for analysis/display/stats?

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Thanks Markus for posting here. I’m very interested in methods for tracking progressive conditions, just replying to mark this and let you know that I’m thinking about it and will try to respond more deeply when I have time in the next week or so. Tagging @Sara who might be interested in replying also.

Hi, thanks for getting in touch. I came across QS through a recent publication where colleagues from Switzerland used QS software to track the benefit of spine surgery (see below). However on the App Store I was informed “not available” in my part of the world (Berlin, Germany).
The crucial point for the MS field is long time data, a couple years. When I look at my own iPhone I can see 2 year data but not more. Therefor how to access this data is part of the puzzle.

Brain Spine 2022 Mar :
Smartphone-based real-life activity data for physical performance outcome in comparison to conventional subjective and objective outcome measures after degenerative lumbar spine surgery

Thank you for sharing the study. I found the link here:
Smartphone-based real-life activity data for physical performance outcome in comparison to conventional subjective and objective outcome measures after degenerative lumbar spine surgery - PMC

It was interesting to see the us of the QS Access app in this research, because I didn’t think the app was still functioning at the time of the data collection. We are not maintaining it any more because it was costly to keep it updated, and although other apps don’t work in exactly the same way (we like our ideas about how to do it), there are certainly enough alternatives that the benefit of doing our own thing here is marginal.

I believe that you can export your the entire Apple Health record; admittedly the challenge after this is to parse the files, but there are now a number of apps on the app store that promise this. And if you are working on a research study, you probably can parse xml files, or know somebody who can?

Thanks for posting! My mother and grandmother both suffer from MS and it’s a special interest of mine due to it.

How can you read out the data?

This is typically done via export. As @Agaricus mentioned, you can export your data from health and symptom trackers, like Apple Health, but some (like Apple) specifically omit data (I suspect intentionally after multiple conversations with Apple support).

Other apps exist for health and symptom tracking that you’ll find we have discussed in this forum. I work with a nonprofit that is trying to bridge the gap of data ownership and overcome the “walled garden” problem that many services inflict on end-users (like how Apple withholds some of your data even in exports, most notably medications). I’ve seen a lot of users report they enjoy how mobile apps like Guava handle symptom tracking. Our nonprofit’s app Best Life also allows some flexible tracking. Metriport is a crowd favorite but they stopped supporting their mobile app a year or so ago. There are more, you’ll find some of those discussions here.

What would be the best way for analysis/display/stats?

Everyone has a different preference, but the biggest takeaway is to cater to your audience. If you’re trying to serve the end-user, then it needs to be consumable for the end-user specifically when it comes to simplicity and interactivity. If you’re trying to serve the physician, researcher, etc. then you need to interview them and see how they prefer the data.

The nonprofit I work with is starting our effort to make data exports consumable for end-users (like in CSV or JSON files) and interviewing professionals to see what they want to see in a “doctor export.” We are currently avoiding integrations with EHR software or similar since that removes the data ownership from the individual. We in the QS space are very sensitive to that and don’t want to lose the rights to our own data just to get it in an EHR software that a physician may or may not review either way.

If you have specific questions or thoughts on what you as a physician would like to see in these types of data exports, many of the participants in the QS forum have worked on methods to analyze their data and could provide more insights.