Building the foundation for a modern patient-partnered infrastructure to study temporomandibular disorders
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 RoundTab...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2023-05-01
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| Series: | Frontiers in Digital Health |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fdgth.2023.1132446/full |
| _version_ | 1797826670108868608 |
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| author | Laura Elisabeth Gressler Laura Elisabeth Gressler Terrie Cowley Marti Velezis Suvekshya Aryal Deanne Clare John W. Kusiak Allen W. Cowley Art Sedrakyan Danica Marinac-Dabic Michelle Reardon Lisa Schmidt Jennifer Ginsburg Feldman Vincent DiFabio Suzie Bergman Vahan Simonyan Yelena Yesha Ingrid Vasiliu-Feltes Justin Durham Justin Durham Andrew I. Steen Phillip Woods Flavia P. Kapos Nilsa Loyo-Berrios |
| author_facet | Laura Elisabeth Gressler Laura Elisabeth Gressler Terrie Cowley Marti Velezis Suvekshya Aryal Deanne Clare John W. Kusiak Allen W. Cowley Art Sedrakyan Danica Marinac-Dabic Michelle Reardon Lisa Schmidt Jennifer Ginsburg Feldman Vincent DiFabio Suzie Bergman Vahan Simonyan Yelena Yesha Ingrid Vasiliu-Feltes Justin Durham Justin Durham Andrew I. Steen Phillip Woods Flavia P. Kapos Nilsa Loyo-Berrios |
| author_sort | Laura Elisabeth Gressler |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-09T12:36:07Z |
| format | Article |
| id | doaj.art-192a9103aaf845cf829420f0aa6c0062 |
| institution | Directory Open Access Journal |
| issn | 2673-253X |
| language | English |
| last_indexed | 2024-04-09T12:36:07Z |
| publishDate | 2023-05-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Digital Health |
| spelling | doaj.art-192a9103aaf845cf829420f0aa6c00622023-05-15T10:40:09ZengFrontiers Media S.A.Frontiers in Digital Health2673-253X2023-05-01510.3389/fdgth.2023.11324461132446Building the foundation for a modern patient-partnered infrastructure to study temporomandibular disordersLaura Elisabeth Gressler0Laura Elisabeth Gressler1Terrie Cowley2Marti Velezis3Suvekshya Aryal4Deanne Clare5John W. Kusiak6Allen W. Cowley7Art Sedrakyan8Danica Marinac-Dabic9Michelle Reardon10Lisa Schmidt11Jennifer Ginsburg Feldman12Vincent DiFabio13Suzie Bergman14Vahan Simonyan15Yelena Yesha16Ingrid Vasiliu-Feltes17Justin Durham18Justin Durham19Andrew I. Steen20Phillip Woods21Flavia P. Kapos22Nilsa Loyo-Berrios23Center for Devices and Radiological Health (CDRH), Food and Drug Administration, Silver Spring, MD, United StatesDivision of Pharmaceutical Evaluation and Policy, University of Arkansas for Medical Sciences, Little Rock, AR, United StatesTMJ AssociationMilwaukee, WI, United StatesCenter for Devices and Radiological Health (CDRH), Food and Drug Administration, Silver Spring, MD, United StatesDepartment of Population Health Sciences, Weill Cornell Medicine, New York, NY, United StatesTMJ AssociationMilwaukee, WI, United StatesTMJ AssociationMilwaukee, WI, United StatesDepartment of Physiology, Medical College of Wisconsin, Madison, WI, United StatesDepartment of Population Health Sciences, Weill Cornell Medicine, New York, NY, United StatesCenter for Devices and Radiological Health (CDRH), Food and Drug Administration, Silver Spring, MD, United StatesTMJ AssociationMilwaukee, WI, United StatesTMJ AssociationMilwaukee, WI, United StatesTMJ AssociationMilwaukee, WI, United StatesOral and Maxillofacial Surgery, University of Maryland Medical System, Baltimore, MD, United StatesDentistry on Officers Row, Vancouver, WA, United StatesEmbleema, Washington, DC, United StatesDepartment of Computer Science, University of Miami, Miami, FL, United States0SofThread, Miami, FL, United States1School of Dental Sciences, NewcastleUnited Kingdom2Newcastle-Upon Tyne Hospitals’ NHS Foundation Trust, Newcastle, United KingdomCenter for Devices and Radiological Health (CDRH), Food and Drug Administration, Silver Spring, MD, United StatesCenter for Devices and Radiological Health (CDRH), Food and Drug Administration, Silver Spring, MD, United States3Center for Child Health, Behavior and Development, Seattle Children’s Research Institute, Seattle, WA, United StatesCenter for Devices and Radiological Health (CDRH), Food and Drug Administration, Silver Spring, MD, United StatesBackgroundConflicting 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.https://www.frontiersin.org/articles/10.3389/fdgth.2023.1132446/fulltemporomandibular jointtemporomandibular joint disorderstemporomandibular joint dysfunction syndrometemporomandibular joint discdelphicoordinated registry network |
| spellingShingle | Laura Elisabeth Gressler Laura Elisabeth Gressler Terrie Cowley Marti Velezis Suvekshya Aryal Deanne Clare John W. Kusiak Allen W. Cowley Art Sedrakyan Danica Marinac-Dabic Michelle Reardon Lisa Schmidt Jennifer Ginsburg Feldman Vincent DiFabio Suzie Bergman Vahan Simonyan Yelena Yesha Ingrid Vasiliu-Feltes Justin Durham Justin Durham Andrew I. Steen Phillip Woods Flavia P. Kapos Nilsa Loyo-Berrios Building the foundation for a modern patient-partnered infrastructure to study temporomandibular disorders Frontiers in Digital Health temporomandibular joint temporomandibular joint disorders temporomandibular joint dysfunction syndrome temporomandibular joint disc delphi coordinated registry network |
| title | Building the foundation for a modern patient-partnered infrastructure to study temporomandibular disorders |
| title_full | Building the foundation for a modern patient-partnered infrastructure to study temporomandibular disorders |
| title_fullStr | Building the foundation for a modern patient-partnered infrastructure to study temporomandibular disorders |
| title_full_unstemmed | Building the foundation for a modern patient-partnered infrastructure to study temporomandibular disorders |
| title_short | Building the foundation for a modern patient-partnered infrastructure to study temporomandibular disorders |
| title_sort | building the foundation for a modern patient partnered infrastructure to study temporomandibular disorders |
| topic | temporomandibular joint temporomandibular joint disorders temporomandibular joint dysfunction syndrome temporomandibular joint disc delphi coordinated registry network |
| url | https://www.frontiersin.org/articles/10.3389/fdgth.2023.1132446/full |
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