The Implementation Science for Genomic Health Translation (INSIGHT) Study in Epilepsy: Protocol for a Learning Health Care System

Feofanova, Elena V.; Zhang, Guo Qiang; Lhatoo, Samden D.; Metcalf, Ginger; Boerwinkle, Eric

doi:10.2196/25576

Cited by 3 publications

(2 citation statements)

References 90 publications

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“…Several commentaries have been published providing advice on implementing an RLHS in mental health, behavioral health, and substance use [ 28 - 30 ]. Likewise, several recent protocol papers describe ongoing work using an RLHS to improve treatments for epilepsy [ 31 ], autism [ 32 ], and early intervention for psychosis [ 33 ].…”

Section: Introductionmentioning

confidence: 99%

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Using a Rapid Learning Health System for Stratified Care in Emerging Adult Mental Health Services: Protocol for the Implementation of Patient-Reported Outcome Measures

Dimitropoulos,

Lindenbach,

Potestio

et al. 2024

JMIR Res Protoc

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Background Mental illness among emerging adults is often difficult to ameliorate due to fluctuating symptoms and heterogeneity. Recently, innovative approaches have been developed to improve mental health care for emerging adults, including (1) implementing patient-reported outcome measures (PROMs) to assess illness severity and inform stratified care to assign emerging adults to a treatment modality commensurate with their level of impairment and (2) implementing a rapid learning health system in which data are continuously collected and analyzed to generate new insights, which are then translated to clinical practice, including collaboration among clients, health care providers, and researchers to co-design and coevaluate assessment and treatment strategies. Objective The aim of the study is to determine the feasibility and acceptability of implementing a rapid learning health system to enable a measurement-based, stratified care treatment strategy for emerging adults. Methods This study takes place at a specialty clinic serving emerging adults (age 16-24 years) in Calgary, Canada, and involves extensive collaboration among researchers, providers, and youth. The study design includes six phases: (1) developing a transdiagnostic platform for PROMs, (2) designing an initial stratified care model, (3) combining the implementation of PROMs with stratified care, (4) evaluating outcomes and disseminating results, (5) modification of stratified care based on data derived from PROMs, and (6) spread and scale to new sites. Qualitative and quantitative feedback will be collected from health care providers and youth throughout the implementation process. These data will be analyzed at regular intervals and used to modify the way future services are delivered. The RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework is used to organize and evaluate implementation according to 3 key objectives: improving treatment selection, reducing average wait time and treatment duration, and increasing the value of services. Results This project was funded through a program grant running from 2021 to 2026. Ethics approval for this study was received in February 2023. Presently, we have developed a system of PROMs and organized clinical services into strata of care. We will soon begin using PROMs to assign clients to a stratum of care and using feedback from youth and clinicians to understand how to improve experiences and outcomes. Conclusions This study has key implications for researchers and clinicians looking to understand how to customize emerging adult mental health services to improve the quality of care and satisfaction with care. This study has significant implications for mental health care systems as part of a movement toward value-based health care. International Registered Report Identifier (IRRID) PRR1-10.2196/51667

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Section: Introductionmentioning

confidence: 99%

“…Thus, the RLHS may also be beneficial for bridging the gap between research and practice [ 25 ]. To facilitate the uptake and use of an RLHS, implementation science methods can be used to guide and document the process [ 30 , 31 , 33 ].…”

Section: Introductionmentioning

confidence: 99%

Using a Rapid Learning Health System for Stratified Care in Emerging Adult Mental Health Services: Protocol for the Implementation of Patient-Reported Outcome Measures

Dimitropoulos,

Lindenbach,

Potestio

et al. 2024

JMIR Res Protoc

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Tracking updates in clinical databases increases efficiency for variant reanalysis

Li,

Tian,

Woodzell

et al. 2024

Genetics in Medicine Open

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Using a Rapid Learning Health System for Stratified Care in Emerging Adult Mental Health Services: Protocol for the Implementation of Patient-Reported Outcome Measures (Preprint)

Dimitropoulos,

Lindenbach,

Potestio

et al. 2023

Preprint

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BACKGROUND Mental illness among emerging adults is often difficult to ameliorate due to fluctuating symptoms and heterogeneity. Recently, innovative approaches have been develop to improve mental health care for emerging adults including: 1) Measurement-based care to assess illness severity and inform stratified care to assign emerging adults to a treatment modality commensurate with their level of impairment, 2) Implementation of a rapid learning health system in which data are continuously collected and analyzed to generate new insights which are then translated to clinical practice, including collaboration between clients, healthcare providers and researchers to co-design and co-evaluate assessment and treatment strategies. OBJECTIVE To determine the feasibility and acceptability of implementing a rapid learning health system to enable a measurement-based, stratified care treatment strategy for emerging adults. METHODS This study takes place at a specialty clinic serving emerging adults (age 16-24) in Calgary, Canada and involves extensive collaboration between researchers, providers and youth. Qualitative and quantitative feedback will be collected from healthcare providers and youth throughout the implementation process. These data will be analyzed at regular intervals and used to modify the way future services are delivered. RESULTS Presently, we have developed a measurement-based care platform and organized clinical services into strata of care. We will soon begin using measurement-based care to assign clients to a stratum of care and using feedback from youth and clinicians to understand how to improve experiences and outcomes. CONCLUSIONS This study has key implications for researchers and clinicians looking to understand how to customize emerging adult mental health services to improve quality of care and satisfaction with care.

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The Implementation Science for Genomic Health Translation (INSIGHT) Study in Epilepsy: Protocol for a Learning Health Care System

Cited by 3 publications

References 90 publications

Using a Rapid Learning Health System for Stratified Care in Emerging Adult Mental Health Services: Protocol for the Implementation of Patient-Reported Outcome Measures

Using a Rapid Learning Health System for Stratified Care in Emerging Adult Mental Health Services: Protocol for the Implementation of Patient-Reported Outcome Measures

Tracking updates in clinical databases increases efficiency for variant reanalysis

Using a Rapid Learning Health System for Stratified Care in Emerging Adult Mental Health Services: Protocol for the Implementation of Patient-Reported Outcome Measures (Preprint)

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