Integrating Ambient In-Home Sensor Data and Electronic Health Record Data for the Prediction of Outcomes in Amyotrophic Lateral Sclerosis: Protocol for an Exploratory Feasibility Study
BackgroundAmyotrophic lateral sclerosis (ALS) leads to rapid physiological and functional decline before causing untimely death. Current best-practice approaches to interdisciplinary care are unable to provide adequate monitoring of patients’ health. Passive in-home sensor sy...
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JMIR Publications
2025-03-01
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| Series: | JMIR Research Protocols |
| Online Access: | https://www.researchprotocols.org/2025/1/e60437 |
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| author | William E Janes Noah Marchal Xing Song Mihail Popescu Abu Saleh Mohammad Mosa Juliana H Earwood Vovanti Jones Marjorie Skubic |
| author_facet | William E Janes Noah Marchal Xing Song Mihail Popescu Abu Saleh Mohammad Mosa Juliana H Earwood Vovanti Jones Marjorie Skubic |
| author_sort | William E Janes |
| collection | DOAJ |
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BackgroundAmyotrophic lateral sclerosis (ALS) leads to rapid physiological and functional decline before causing untimely death. Current best-practice approaches to interdisciplinary care are unable to provide adequate monitoring of patients’ health. Passive in-home sensor systems enable 24×7 health monitoring. Combining sensor data with outcomes extracted from the electronic health record (EHR) through a supervised machine learning algorithm may enable health care providers to predict and ultimately slow decline among people living with ALS.
ObjectiveThis study aims to describe a federated approach to assimilating sensor and EHR data in a machine learning algorithm to predict decline among people living with ALS.
MethodsSensor systems have been continuously deployed in the homes of 4 participants for up to 330 days. Sensors include bed, gait, and motion sensors. Sensor data are subjected to a multidimensional streaming clustering algorithm to detect changes in health status. Specific health outcomes are identified in the EHR and extracted via the REDCap (Research Electronic Data Capture; Vanderbilt University) Fast Healthcare Interoperability Resource directly into a secure database.
ResultsAs of this writing (fall 2024), machine learning algorithms are currently in development to predict those health outcomes from sensor-detected changes in health status. This methodology paper presents preliminary results from one participant as a proof of concept. The participant experienced several notable changes in activity, fluctuations in heart rate and respiration rate, and reductions in gait speed. Data collection will continue through 2025 with a growing sample.
ConclusionsThe system described in this paper enables tracking the health status of people living with ALS at unprecedented levels of granularity. Combined with tightly integrated EHR data, we anticipate building predictive models that can identify opportunities for health care services before adverse events occur. We anticipate that this system will improve and extend the lives of people living with ALS.
International Registered Report Identifier (IRRID)DERR1-10.2196/60437 |
| format | Article |
| id | doaj-art-9c7d9b4ddf044d5f857c03afed388712 |
| institution | DOAJ |
| issn | 1929-0748 |
| language | English |
| publishDate | 2025-03-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Research Protocols |
| spelling | doaj-art-9c7d9b4ddf044d5f857c03afed3887122025-08-20T02:52:38ZengJMIR PublicationsJMIR Research Protocols1929-07482025-03-0114e6043710.2196/60437Integrating Ambient In-Home Sensor Data and Electronic Health Record Data for the Prediction of Outcomes in Amyotrophic Lateral Sclerosis: Protocol for an Exploratory Feasibility StudyWilliam E Janeshttps://orcid.org/0000-0002-6502-8130Noah Marchalhttps://orcid.org/0000-0003-2591-3984Xing Songhttps://orcid.org/0000-0002-3712-2904Mihail Popescuhttps://orcid.org/0000-0002-6145-8096Abu Saleh Mohammad Mosahttps://orcid.org/0000-0002-8956-1466Juliana H Earwoodhttps://orcid.org/0000-0002-2694-4486Vovanti Joneshttps://orcid.org/0000-0003-4402-1471Marjorie Skubichttps://orcid.org/0000-0002-3801-7639 BackgroundAmyotrophic lateral sclerosis (ALS) leads to rapid physiological and functional decline before causing untimely death. Current best-practice approaches to interdisciplinary care are unable to provide adequate monitoring of patients’ health. Passive in-home sensor systems enable 24×7 health monitoring. Combining sensor data with outcomes extracted from the electronic health record (EHR) through a supervised machine learning algorithm may enable health care providers to predict and ultimately slow decline among people living with ALS. ObjectiveThis study aims to describe a federated approach to assimilating sensor and EHR data in a machine learning algorithm to predict decline among people living with ALS. MethodsSensor systems have been continuously deployed in the homes of 4 participants for up to 330 days. Sensors include bed, gait, and motion sensors. Sensor data are subjected to a multidimensional streaming clustering algorithm to detect changes in health status. Specific health outcomes are identified in the EHR and extracted via the REDCap (Research Electronic Data Capture; Vanderbilt University) Fast Healthcare Interoperability Resource directly into a secure database. ResultsAs of this writing (fall 2024), machine learning algorithms are currently in development to predict those health outcomes from sensor-detected changes in health status. This methodology paper presents preliminary results from one participant as a proof of concept. The participant experienced several notable changes in activity, fluctuations in heart rate and respiration rate, and reductions in gait speed. Data collection will continue through 2025 with a growing sample. ConclusionsThe system described in this paper enables tracking the health status of people living with ALS at unprecedented levels of granularity. Combined with tightly integrated EHR data, we anticipate building predictive models that can identify opportunities for health care services before adverse events occur. We anticipate that this system will improve and extend the lives of people living with ALS. International Registered Report Identifier (IRRID)DERR1-10.2196/60437https://www.researchprotocols.org/2025/1/e60437 |
| spellingShingle | William E Janes Noah Marchal Xing Song Mihail Popescu Abu Saleh Mohammad Mosa Juliana H Earwood Vovanti Jones Marjorie Skubic Integrating Ambient In-Home Sensor Data and Electronic Health Record Data for the Prediction of Outcomes in Amyotrophic Lateral Sclerosis: Protocol for an Exploratory Feasibility Study JMIR Research Protocols |
| title | Integrating Ambient In-Home Sensor Data and Electronic Health Record Data for the Prediction of Outcomes in Amyotrophic Lateral Sclerosis: Protocol for an Exploratory Feasibility Study |
| title_full | Integrating Ambient In-Home Sensor Data and Electronic Health Record Data for the Prediction of Outcomes in Amyotrophic Lateral Sclerosis: Protocol for an Exploratory Feasibility Study |
| title_fullStr | Integrating Ambient In-Home Sensor Data and Electronic Health Record Data for the Prediction of Outcomes in Amyotrophic Lateral Sclerosis: Protocol for an Exploratory Feasibility Study |
| title_full_unstemmed | Integrating Ambient In-Home Sensor Data and Electronic Health Record Data for the Prediction of Outcomes in Amyotrophic Lateral Sclerosis: Protocol for an Exploratory Feasibility Study |
| title_short | Integrating Ambient In-Home Sensor Data and Electronic Health Record Data for the Prediction of Outcomes in Amyotrophic Lateral Sclerosis: Protocol for an Exploratory Feasibility Study |
| title_sort | integrating ambient in home sensor data and electronic health record data for the prediction of outcomes in amyotrophic lateral sclerosis protocol for an exploratory feasibility study |
| url | https://www.researchprotocols.org/2025/1/e60437 |
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