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

Espay AJ, Hausdorff JM, Sánchez-Ferro Á, Klucken J, Merola A, Bonato P, Paul SS, Horak FB, Vizcarra JA, Mestre TA, Reilmann R, Nieuwboer A, Dorsey ER, Rochester L, Bloem BR, Maetzler W (2019)

Publication Type: Journal article, Review article

Publication year: 2019

Journal

Movement Disorders Wiley-Blackwell

DOI: 10.1002/mds.27671

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. © 2019 International Parkinson and Movement Disorder Society.

Authors with CRIS profile

Jochen Klucken Department of Molecular Neurology

Involved external institutions

Newcastle upon Tyne Hospitals NHS Foundation Trust GB United Kingdom (GB) Christian-Albrechts-Universität zu Kiel DE Germany (DE) Katholieke Universiteit Leuven (KUL) / Catholic University of Leuven BE Belgium (BE) Hospital HM Puerta del Sur en Móstoles ES Spain (ES) Tel Aviv Sourasky Medical Center / Ichilov Hospital IL Israel (IL) University of Rochester Medical Center Rochester, NY US United States (USA) (US) University of Sydney (USYD) AU Australia (AU) Radboud University Nijmegen Medical Centre / Radboudumc of voluit Radboud Universitair Medisch Centrum (UMC) NL Netherlands (NL) Veterans Affairs Healthcare System Boston and Harvard Medical School US United States (USA) (US) University of Cincinnati US United States (USA) (US) APDM US United States (USA) (US) George-Huntington-Institut GmbH DE Germany (DE) Ottawa Hospital Research Institute CA Canada (CA)

How to cite

APA:

Espay, A.J., Hausdorff, J.M., Sánchez-Ferro, Á., Klucken, J., Merola, A., Bonato, P.,... Maetzler, W. (2019). A roadmap for implementation of patient-centered digital outcome measures in Parkinson's disease obtained using mobile health technologies. Movement Disorders. https://dx.doi.org/10.1002/mds.27671

MLA:

Espay, Alberto J., et al. "A roadmap for implementation of patient-centered digital outcome measures in Parkinson's disease obtained using mobile health technologies." Movement Disorders (2019).

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