Harnessing Mobile Devices for Nervous System Disorders Proceedings of a Workshop (2018) / Chapter Skim
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7 Moving Forward by Building Partnerships
7 Moving Forward by Building Partnerships
Pages 45-54
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From page 45... ...
. • Bringing companies together across the entire product de velopment spectrum has enabled innovation in the digital technology space, including devices to stimulate behavioral change and assess brain activity for early diagnosis and disease progression monitoring (Peumans)
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From page 46... ...
Having a large and diverse group of stakeholders together at the table from the very beginning of the process of developing digital technologies is essential as society addresses ethical and privacy issues related to their use, said Husseini Manji. Magali Haas noted that the workshop itself brought together precisely those stakeholders who could play a part in building precompetitive partnerships with patients at the center providing the data.
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From page 47... ...
To facilitate the collection of real-world data from people with PD, Kopil said MJFF also invested in a digital platform they call Fox Insight, which uses online questionnaires to collect data on the experiences of persons living with PD. In addition to using Fox Insight for this longitudinal observational study, MJFF is also partnering with two NIH-funded clinical trial teams to conduct long-term follow-up of trial participants with PROs, biosensors, mHealth apps, and telemedicine visits.
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From page 48... ...
For example, Peumans described a silicon probe that records neural activity from multiple brain structures in freely moving animals. The probe was developed by imec and academic partners, with funding from the Allen Institute for Brain Science, Gatsby Charitable Foundation, the Howard Hughes Medical Institute, and the Wellcome Trust.
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From page 49... ...
In many cases, these studies have shown that smartphone apps and other digital tools may more accurately capture intraindividual variations in symptomatology over time, said John Torous, director of the division of digital psychiatry at Beth Israel Deaconess Medical Center in Boston. For example, in a partnership with JP Onnela and colleagues, Torous used a personal smartphone custom app to assess depressive symptoms, including suicidality, in participants with major depressive disorder.
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For example, Ardy Arianpour, CEO of the consumer-driven health care technology platform Seqster,2 said his company has created two platforms -- Health One for individuals and the multigenerational platform Health Trust for families -- that enable people to aggregate their health data together from apps and wearables, genomic studies, electronic health records, and questionnaires, thus empowering them to take control of their health. The main challenge, said Arianpour, was interoperability.
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One problem with data aggregation from digital devices such as wearables is that sensors and devices, especially in the consumer space, provide access only to reduced data such as step counts, which would not be informative for algorithms, said Vaibhav Narayan. Custom-designed devices provide differentiation in the marketplace, which has commercial value for developers.
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For medical device and app developers interested in having access to research cohorts, Kopil suggested that groups like MJFF can play a role in forming partnerships contingent on the partners' willingness to share raw data and algorithms. Although there is a long contracting process involved in these partnership agreements, Kopil said access to patient populations and other resources may incentivize developers to share data and algorithms.
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Digital health data from mobile devices and electronic health records, combined with genomic data, biospecimens, and participant-provided information, will be collected over a 10 year period. A participant portal will provide participants with ac cess to their own data.
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FINAL REMARKS William Marks concluded his remarks by saying that the convergence of these technologies and opportunities offers the prospect of developing better measures of brain disease. Initially complementary, digital measures may at some point replace more traditional measures, he said.
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