MS patients most likely to engage with self-reported tracker if referred by a doctor

A study published in JMIR found that patients with multiple sclerosis were able to capture real-world, self-reported data via an app.
By Laura Lovett
02:17 pm
A woman types on her cellphone

It’s no secret that real-world data is becoming a hot topic in the sphere of clinical trials and healthcare. A new study published by JMIR found that patients with multiple sclerosis were able to capture their symptoms via a tracking app called elevateMS. Researchers also found that engagement was highest among those who had a doctor’s referral. 

“The elevateMS study app captured the real-world experience of MS, characterized some MS symptoms, and assessed the impact of environmental factors on symptom severity,” authors of the study wrote. “Our study provides further evidence that supports smartphone app use to monitor MS with both active assessments and patient-reported measures of disease burden.”


Researchers found that participants with a clinical referral were most likely to stay engaged longer. Those with a referral had a median retention rate of 25.5 days, whereas those without a referral had a median retention of 7 days. 

The study also found that the most common symptoms reported by patients with MS were fatigue, weakness, memory and attention issues, and difficulty walking. 


The study broke participants up into three groups: those with self-referrals who reported an MS diagnosis, clinical referrals of patients who had a neurologist-confirmed MS diagnosis and participants without MS. 

The study lasted 12-weeks. At the start of the study, participants were instructed to download the app. Participants were then asked to fill out a number of baseline assessment, including a self-reported physical ability assessment (Patient-Determined Disease Steps or PDDS), a quality-of-life assessment and a daily health assessment. In addition, participants completed functional tests. 

A total of 660 participants signed up for the study, but 31 of them withdrew. The breakdown of the group was 359 in the self-referred category, 134 in the controls and 136 in the clinically referred group.


Real-world data is now pouring in from digital devices. That data comes from remote patient monitoring tools, EHRs and self-reported data, as in this study. A few weeks ago, at HLTH FDA, Commissioner Dr. Stephen Hahn noted the importance of real-world evidence and being able to implement that data.

Self-reported symptom-trackers were even used during the coronavirus. Researchers from Carnegie Mellon University found that self-reported coronavirus symptoms from surveys posted on Facebook and Google correlated to test-confirmed cases. The results then went on to be part of the university’s new disease forecast map, COVIDcast, which will also include data from others like the Quidel Corp.

Retention rates have been a historical struggle in digital health startups. In February, NPJ Digital Medicine published an investigation into health research apps where elevateMS was included. It found that, while apps are able to recruit a large number of participants, there were also early dropout rates and a lack of diversity. 


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