Amidst the increasing datafication of healthcare, deep digital phenotyping is being explored in clinical research to gather comprehensive data that can improve understanding of neurological conditions. However, participants currently do not have access to this data due to researchers' apprehension around whether such data is interpretable or useful. This study focuses on patient perspectives on the potential of deep digital phenotyping data to benefit people with neurodegenerative diseases, such as ataxias, Parkinson's disease, and multiple system atrophy. We present an interview study (n=12) to understand how people with these conditions currently track their symptoms and how they envision interacting with their deep digital phenotyping data. We describe how participants envision the utility of this deep digital phenotyping data in relation to multiple stages of disease and stakeholders, especially its potential to bridge different and sometimes conflicting understandings of their condition. Looking towards a future in which patients have increased agency over their data and can use it to inform their care, we contribute implications for shaping patient-driven clinical research practices and deep digital phenotyping tools that serve a multiplicity of patient needs.

Hevelius, a web-based computer mouse test, measures arm movement and has been shown to accurately evaluate severity for patients with Parkinson’s disease and ataxias. A Hevelius session produces 32 numeric features, which may be hard to interpret, especially in time-constrained clinical settings. This work aims to support clinicians (and other stakeholders) in interpreting and connecting Hevelius features to clinical concepts. Through an iterative design process, we developed a visualization tool (Hevelius Report) that (1) abstracts six clinically relevant concepts from 32 features, (2) visualizes patient test results, and compares them to results from healthy controls and other patients, and (3) is an interactive app to meet the specific needs in different usage scenarios. Then, we conducted a preliminary user study through an online interview with three clinicians who were not involved in the project. They expressed interest in using Hevelius Report, especially for identifying subtle changes in their patients’ mobility that are hard to capture with existing clinical tests. Future work will integrate the visualization tool into the current clinical workflow of a neurology team and conduct systematic evaluations of the tool’s usefulness, usability, and effectiveness. Hevelius Report represents a promising solution for analyzing fine-motor test results and monitoring patients’ conditions and progressions.

Digital phenotyping in clinical research provides objective measures when evaluating neurological conditions, such as ataxias and Parkinson’s disease. While the clinical validity of digital phenotyping data is yet to be fully determined, individual research results are not reported back to participants due to apprehension about how complex data types should be represented, the manner in which results should be communicated to patients, and the possibility of uncertain results being misinterpreted. However, researchers are calling for individual results to be made available to participants, respecting participants’ ownership of their quantified selves and improving transparency of research practices. To investigate how patients with progressive conditions might value seeing their data, we are conducting an interview study with neurology patients who have participated in digital phenotyping. We report initial findings from four participants, who expressed interest in using digital phenotyping data to 1) motivate their care, 2) make perception of their condition concrete, 3) reduce labor in tracking and communicating their condition, and 4) perceive their contributions to clinical research. This work points to exciting potential of patient-centered digital phenotyping to benefit patients’ understanding of themselves, and push forward a paradigm of ethical data report-back.

Healthcare providers play a critical role in the management of a chronic illness by providing education about the disease, recommending treatment options, and developing care plans. However, when managing a rare disease, patients and their primary caregivers often work with healthcare systems that lack the infrastructure to diagnosis, treat, or provide education on the disease. Little research has explored care coordination practices between patients, family members, and healthcare providers under these circumstances. With the goal of identifying opportunities for technological support, we conducted qualitative interviews with the primary caregivers of children with a rare neurodegenerative disorder, ataxia-telangiectasia. We report on the responsibilities that the primary caregivers take on in response to care teams' lack of experience with the illness, and the ways in which an online health community supports this care coordination work. We also describe barriers that limited participants' use of the online health community, including the emotional consequences of participation and information overload. Based on these findings, we discuss two promising research agendas for supporting rare disease management: facilitating primary caregivers' care coordination tasks and increasing access to online community knowledge.