Devices like mobile phones and smartwatches are giving patients a new platform to contribute powerful, real-time data to medical researchers, but how do we make sure their contributions are truly heard and used to impact clinical research? Lily Cappelletti, Director of Research Engagement with The Michael J. Fox Foundation for Parkinson’s Research (MJFF), is today’s blog contributor. Read on to learn more about how her organization is utilizing mHealth to empower patients to make a difference through their own data and feedback.
At The Michael J. Fox Foundation, patients are our partners in clinical research. They are the only ones who can tell us about the experience of daily life with Parkinson’s disease, so we look for new and innovative tools that allow them to contribute their unique perspectives.
mHealth technology will never replace clinical examinations, but it offers a supplemental, objective picture captured over time. We’re hoping that data can translate to insights that will teach us more about the variability and progression of this heterogeneous disease, advancing research and care practices.
MJFF recently launched Fox Insight, an online portal of virtual research opportunities where participants, both those with and without Parkinson’s, can enter data on symptoms, medication use and other aspects of daily living. From their own homes, participants can contribute to a holistic dataset on the lived experience of Parkinson’s disease.
We are working now to integrate data captured through mobile applications and wearable devices into the Fox Insight ecosystem. Since 2014, we have been partnering with Intel to evaluate wrist-worn devices for tracking measurable features of Parkinson’s, like slowness and frequency of movement. Intel engineers are comparing the data to clinical observations and patient diaries to test the devices’ accuracy and are developing algorithms to translate the data to actionable insights.
MJFF is also involved in the rollout of the Parkinson’s mPower app, which captures patient and control volunteer data through surveys and tasks such as finger tapping and voice testing. Data from these devices coupled with the information on medication use, medical history, etc. entered into Fox Insight may lead to greater understanding of, for example, Parkinson’s subtypes.
As is the case with any new innovation, there is a learning curve. Some question whether the patient sample is representative of the broader population. Of course, this is a concern for traditional trials, as well. Selection bias is unavoidable. The hope with these technology-enabled studies is that we will attract a large enough sample size that the findings will be generalizable.
As evidenced by the innovation taking place at The Michael J. Fox Foundation, the opportunities for mHealth use within clinical studies – including with apps and wearables – are limitless. For more on mobile health technology insights download our free eBook or our latest Focus 5: mHealth, which features a Q&A with our guest blogger Lily Cappelletti of The Michael J. Fox Foundation.