Background
Smartphones have, for many, become part of the fabric of everyday life. These modern devices are equipped with an array of sophisticated sensors and can store incredible amounts of data, making them potentially powerful research tools. Now, researchers are hoping to harness this ever-present tool to help them better study multiple sclerosis.
Classic study paradigms – for example, participants visiting a clinic – occur in a controlled environment and only give clinicians a snapshot of the disorder at that moment in time. Smartphones, by comparison, can be taken home and installed with specialized software (known as “apps”) that test the users’ motor and cognitive skills. This type of technology allows researchers to gather data on a daily basis, allowing for the study of day-to-day fluctuations across a number of MS-related outcomes. Furthermore, all tests and measures are captured as the individual goes about his or her daily life, making the findings more relevant to their MS experience than a visit to the clinic.
A research team, headed by Dr. Philip De Jager at Harvard Medical School, has begun testing the feasibility of deploying Smartphones installed with specialized apps to follow individuals living with MS. Their findings were published online in the journal of Neurology Neuroimmunology and Neuroinflammation.
The Study
38 participant-pairs (each pair consisting of an individual with MS and a cohabitant) were enrolled in the study. Participants ranged in age from 18 to 55. Each participant was given an Android Smartphone preloaded with a custom-made app. The app housed a total of 19 tests, each meant to assess the participant’s performance across a number of key areas, including colour vision, attention, dexterity, and cognition. Participants were prompted to complete one test daily, selected somewhat randomly over the course of a year. The app also allowed individuals to record their day-to-day well-being (fatigue and mood) over the same period of time.
Results
Of the initial 38 participant-pairs enrolled, only 22 with MS and 17 cohabitants completed the study. Within the MS group, those who reported having vision and cognitive difficulties were the most likely to drop out.
Data collected from the remaining participants demonstrated the potential of Smartphone technology as a research tool. It allowed the researchers to assess how day-to-day fluctuations in a participant’s self-reported well-being matched-up with changes to their environment – such as season, daylight and temperature – by comparing participant responses to available weather data. This form of data is important to researchers, as numerous studies have noted an association between environmental factors and the development and severity of MS.
Because participants repeatedly took the same tests over the course of the study, the research team was also able to establish an individual’s learning curve for each test. The researchers went on to suggest that this practice effect (increasing test proficiency with practice) should be used as a new outcome measure in MS (for example, in a clinical trial where cognitive performance is being evaluated), as it related to a person’s ability to learn a new task. This practice effect would obviously be absent from a single clinical visit.
One drawback to the technology is what scientists call “environmental noise” –variables arising in a person’s day-to-day life that cannot be controlled (for example, a participant jogging before taking the test one day, and not the other). However, by having the participants complete the same test repeatedly over a minimum of six months the researchers found that these variables averaged out, mitigating this environmental noise.
Comments
Dr. De Jager and his team have presented strong evidence for the use of Smartphones in “real-world” research studies. Unlike classic studies conducted in a controlled environment, Smartphones can be taken home to collect data in a more natural setting. Used this way, Smartphones can capture the day-to-day fluctuations in symptoms and test performance experienced by those living with MS, something that cannot be done during a single visit to a clinic. This is not to say that Smartphone technology will replace current study methods; rather, it offers a complementary strategy for gathering additional information that is difficult to capture in a laboratory setting.
Given the rapid evolution of this particular technology, the authors predict that the Smartphone or its equivalent will someday be able to identify significant changes to daily performance, alerting the user or relevant medical personnel to the change. However, as with any continually-recording device, data collection raises privacy issues. The researchers acknowledge that while the technology is a powerful tool for medical research, its use must be balanced, particularly with a view to addressing concerns about privacy and security.
Source
Bove et al. (2015). Evaluating more naturalistic outcome measures: a 1-year smartphone study in multiple sclerosis. Neurol Neuroimmunol Neuroinflamm. 2(6): e162.