Building the foundation for a modern patient-partnered infrastructure to study temporomandibular disorders

Frontiers in Digital Health

Digital Health

Flavia P. Kapos¹  Nilsa Loyo-Berrios²  Marti Velezis²  Danica Marinac-Dabic²  Phillip Woods²  Andrew I. Steen²  Laura Elisabeth Gressler³  Suzie Bergman⁴  Yelena Yesha⁵  Allen W. Cowley⁶  Art Sedrakyan⁷  Suvekshya Aryal⁷  Vahan Simonyan⁸  Vincent DiFabio⁹  Justin Durham^1,10  Ingrid Vasiliu-Feltes^1,11  Jennifer Ginsburg Feldman^1,12  Michelle Reardon^1,12  Deanne Clare^1,12  Lisa Schmidt^1,12  Terrie Cowley^1,12  John W. Kusiak^1,12 

[1] Center for Child Health, Behavior and Development, Seattle Children’s Research Institute, Seattle, WA, United States;Center for Devices and Radiological Health (CDRH), Food and Drug Administration, Silver Spring, MD, United States;Center for Devices and Radiological Health (CDRH), Food and Drug Administration, Silver Spring, MD, United States;Division of Pharmaceutical Evaluation and Policy, University of Arkansas for Medical Sciences, Little Rock, AR, United States;Dentistry on Officers Row, Vancouver, WA, United States;Department of Computer Science, University of Miami, Miami, FL, United States;Department of Physiology, Medical College of Wisconsin, Madison, WI, United States;Department of Population Health Sciences, Weill Cornell Medicine, New York, NY, United States;Embleema, Washington, DC, United States;Oral and Maxillofacial Surgery, University of Maryland Medical System, Baltimore, MD, United States;School of Dental Sciences, Newcastle, United Kingdom;Newcastle-Upon Tyne Hospitals’ NHS Foundation Trust, Newcastle, United Kingdom;SofThread, Miami, FL, United States;TMJ Association, Milwaukee, WI, United States;

关键词: temporomandibular joint;    temporomandibular joint disorders;    temporomandibular joint dysfunction syndrome;    temporomandibular joint disc;    delphi;    coordinated registry network;    data infrastructure and integration;   

DOI  :  10.3389/fdgth.2023.1132446

 received in 2022-12-27, accepted in 2023-04-25,  发布年份 2023

来源: Frontiers

【 摘 要 】

BackgroundConflicting reports from varying stakeholders related to prognosis and outcomes following placement of temporomandibular joint (TMJ) implants gave rise to the development of the TMJ Patient-Led RoundTable initiative. Following an assessment of the current availability of data, the RoundTable concluded that a strategically Coordinated Registry Network (CRN) is needed to collect and generate accessible data on temporomandibular disorder (TMD) and its care. The aim of this study was therefore to advance the clinical understanding, usage, and adoption of a core minimum dataset for TMD patients as the first foundational step toward building the CRN.MethodsCandidate data elements were extracted from existing data sources and included in a Delphi survey administered to 92 participants. Data elements receiving less than 75% consensus were dropped. A purposive multi-stakeholder sub-group triangulated the items across patient and clinician-based experience to remove redundancies or duplicate items and reduce the response burden for both patients and clinicians. To reliably collect the identified data elements, the identified core minimum data elements were defined in the context of technical implementation within High-performance Integrated Virtual Environment (HIVE) web-application framework. HIVE was integrated with CHIOS™, an innovative permissioned blockchain platform, to strengthen the provenance of data captured in the registry and drive metadata to record all registry transaction and create a robust consent network.ResultsA total of 59 multi-stakeholder participants responded to the Delphi survey. The completion of the Delphi surveys followed by the application of the required group consensus threshold resulted in the selection of 397 data elements (254 for patient-generated data elements and 143 for clinician generated data elements). The infrastructure development and integration of HIVE and CHIOS™ was completed showing the maintenance of all data transaction information in blockchain, flexible recording of patient consent, data cataloging, and consent validation through smart contracts.ConclusionThe identified data elements and development of the technological platform establishes a data infrastructure that facilitates the standardization and harmonization of data as well as perform high performance analytics needed to fully leverage the captured patient-generated data, clinical evidence, and other healthcare ecosystem data within the TMJ/TMD-CRN.

【 授权许可】

Unknown   
© 2023 Gressler, Cowley, Velezis, Aryal, Clare, Kusiak, Cowley, Sedrakyan, Marinac-Dabic, Reardon, Schmidt, Feldman, Difabio, Bergman, Simonyan, Yesha, Vasiliu-Feltes, Durham, Steen, Woods, Kapos and Loyo-Berrios.