A roadmap for implementation of patient-centered digital outcome measures in Parkinson's disease obtained using mobile health technologies

on behalf of the Movement Disorder Society Task Force on Technology

Research output: Contribution to journalReview article

3 Citations (Scopus)

Abstract

Obtaining reliable longitudinal information about everyday functioning from individuals with Parkinson's disease (PD) in natural environments is critical for clinical care and research. Despite advances in mobile health technologies, the implementation of digital outcome measures is hindered by a lack of consensus on the type and scope of measures, the most appropriate approach for data capture (eg, in clinic or at home), and the extraction of timely information that meets the needs of patients, clinicians, caregivers, and health care regulators. The Movement Disorder Society Task Force on Technology proposes the following objectives to facilitate the adoption of mobile health technologies: (1) identification of patient-centered and clinically relevant digital outcomes; (2) selection criteria for device combinations that offer an acceptable benefit-to-burden ratio to patients and that deliver reliable, clinically relevant insights; (3) development of an accessible, scalable, and secure platform for data integration and data analytics; and (4) agreement on a pathway for approval by regulators, adoption into e-health systems and implementation by health care organizations. We have developed a tentative roadmap that addresses these needs by providing the following deliverables: (1) results and interpretation of an online survey to define patient-relevant endpoints, (2) agreement on the selection criteria for use of device combinations, (3) an example of an open-source platform for integrating mobile health technology output, and (4) recommendations for assessing readiness for deployment of promising devices and algorithms suitable for regulatory approval. This concrete implementation guidance, harmonizing the collaborative endeavor among stakeholders, can improve assessments of individuals with PD, tailor symptomatic therapy, and enhance health care outcomes.

Original languageEnglish (US)
JournalMovement Disorders
DOIs
StatePublished - Jan 1 2019

Fingerprint

Biomedical Technology
Telemedicine
Parkinson Disease
Outcome Assessment (Health Care)
Delivery of Health Care
Equipment and Supplies
Patient Selection
Secondary Parkinson Disease
Information Storage and Retrieval
Advisory Committees
Critical Care
Caregivers
Organizations
Technology
Health
Research
Therapeutics

Keywords

  • mobile health technologies
  • Parkinson's disease
  • remote monitoring
  • wearable technology

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

Cite this

A roadmap for implementation of patient-centered digital outcome measures in Parkinson's disease obtained using mobile health technologies. / on behalf of the Movement Disorder Society Task Force on Technology.

In: Movement Disorders, 01.01.2019.

Research output: Contribution to journalReview article

@article{fb61ad92d3f54eeba0c86b3fcf159d8b,
title = "A roadmap for implementation of patient-centered digital outcome measures in Parkinson's disease obtained using mobile health technologies",
abstract = "Obtaining reliable longitudinal information about everyday functioning from individuals with Parkinson's disease (PD) in natural environments is critical for clinical care and research. Despite advances in mobile health technologies, the implementation of digital outcome measures is hindered by a lack of consensus on the type and scope of measures, the most appropriate approach for data capture (eg, in clinic or at home), and the extraction of timely information that meets the needs of patients, clinicians, caregivers, and health care regulators. The Movement Disorder Society Task Force on Technology proposes the following objectives to facilitate the adoption of mobile health technologies: (1) identification of patient-centered and clinically relevant digital outcomes; (2) selection criteria for device combinations that offer an acceptable benefit-to-burden ratio to patients and that deliver reliable, clinically relevant insights; (3) development of an accessible, scalable, and secure platform for data integration and data analytics; and (4) agreement on a pathway for approval by regulators, adoption into e-health systems and implementation by health care organizations. We have developed a tentative roadmap that addresses these needs by providing the following deliverables: (1) results and interpretation of an online survey to define patient-relevant endpoints, (2) agreement on the selection criteria for use of device combinations, (3) an example of an open-source platform for integrating mobile health technology output, and (4) recommendations for assessing readiness for deployment of promising devices and algorithms suitable for regulatory approval. This concrete implementation guidance, harmonizing the collaborative endeavor among stakeholders, can improve assessments of individuals with PD, tailor symptomatic therapy, and enhance health care outcomes.",
keywords = "mobile health technologies, Parkinson's disease, remote monitoring, wearable technology",
author = "{on behalf of the Movement Disorder Society Task Force on Technology} and Espay, {Alberto J.} and Hausdorff, {Jeffrey M.} and {\'A}lvaro S{\'a}nchez-Ferro and Jochen Klucken and Aristide Merola and Paolo Bonato and Paul, {Serene S.} and Fay Horak and Vizcarra, {Joaquin A.} and Mestre, {Tiago A.} and Ralf Reilmann and Alice Nieuwboer and Dorsey, {E. Ray} and Lynn Rochester and Bloem, {Bastiaan R.} and Walter Maetzler",
year = "2019",
month = "1",
day = "1",
doi = "10.1002/mds.27671",
language = "English (US)",
journal = "Movement Disorders",
issn = "0885-3185",
publisher = "John Wiley and Sons Inc.",

}

TY - JOUR

T1 - A roadmap for implementation of patient-centered digital outcome measures in Parkinson's disease obtained using mobile health technologies

AU - on behalf of the Movement Disorder Society Task Force on Technology

AU - Espay, Alberto J.

AU - Hausdorff, Jeffrey M.

AU - Sánchez-Ferro, Álvaro

AU - Klucken, Jochen

AU - Merola, Aristide

AU - Bonato, Paolo

AU - Paul, Serene S.

AU - Horak, Fay

AU - Vizcarra, Joaquin A.

AU - Mestre, Tiago A.

AU - Reilmann, Ralf

AU - Nieuwboer, Alice

AU - Dorsey, E. Ray

AU - Rochester, Lynn

AU - Bloem, Bastiaan R.

AU - Maetzler, Walter

PY - 2019/1/1

Y1 - 2019/1/1

N2 - Obtaining reliable longitudinal information about everyday functioning from individuals with Parkinson's disease (PD) in natural environments is critical for clinical care and research. Despite advances in mobile health technologies, the implementation of digital outcome measures is hindered by a lack of consensus on the type and scope of measures, the most appropriate approach for data capture (eg, in clinic or at home), and the extraction of timely information that meets the needs of patients, clinicians, caregivers, and health care regulators. The Movement Disorder Society Task Force on Technology proposes the following objectives to facilitate the adoption of mobile health technologies: (1) identification of patient-centered and clinically relevant digital outcomes; (2) selection criteria for device combinations that offer an acceptable benefit-to-burden ratio to patients and that deliver reliable, clinically relevant insights; (3) development of an accessible, scalable, and secure platform for data integration and data analytics; and (4) agreement on a pathway for approval by regulators, adoption into e-health systems and implementation by health care organizations. We have developed a tentative roadmap that addresses these needs by providing the following deliverables: (1) results and interpretation of an online survey to define patient-relevant endpoints, (2) agreement on the selection criteria for use of device combinations, (3) an example of an open-source platform for integrating mobile health technology output, and (4) recommendations for assessing readiness for deployment of promising devices and algorithms suitable for regulatory approval. This concrete implementation guidance, harmonizing the collaborative endeavor among stakeholders, can improve assessments of individuals with PD, tailor symptomatic therapy, and enhance health care outcomes.

AB - Obtaining reliable longitudinal information about everyday functioning from individuals with Parkinson's disease (PD) in natural environments is critical for clinical care and research. Despite advances in mobile health technologies, the implementation of digital outcome measures is hindered by a lack of consensus on the type and scope of measures, the most appropriate approach for data capture (eg, in clinic or at home), and the extraction of timely information that meets the needs of patients, clinicians, caregivers, and health care regulators. The Movement Disorder Society Task Force on Technology proposes the following objectives to facilitate the adoption of mobile health technologies: (1) identification of patient-centered and clinically relevant digital outcomes; (2) selection criteria for device combinations that offer an acceptable benefit-to-burden ratio to patients and that deliver reliable, clinically relevant insights; (3) development of an accessible, scalable, and secure platform for data integration and data analytics; and (4) agreement on a pathway for approval by regulators, adoption into e-health systems and implementation by health care organizations. We have developed a tentative roadmap that addresses these needs by providing the following deliverables: (1) results and interpretation of an online survey to define patient-relevant endpoints, (2) agreement on the selection criteria for use of device combinations, (3) an example of an open-source platform for integrating mobile health technology output, and (4) recommendations for assessing readiness for deployment of promising devices and algorithms suitable for regulatory approval. This concrete implementation guidance, harmonizing the collaborative endeavor among stakeholders, can improve assessments of individuals with PD, tailor symptomatic therapy, and enhance health care outcomes.

KW - mobile health technologies

KW - Parkinson's disease

KW - remote monitoring

KW - wearable technology

UR - http://www.scopus.com/inward/record.url?scp=85063317882&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85063317882&partnerID=8YFLogxK

U2 - 10.1002/mds.27671

DO - 10.1002/mds.27671

M3 - Review article

JO - Movement Disorders

JF - Movement Disorders

SN - 0885-3185

ER -