ECTRIMS eLearning

OPTIMISE: User-guided solutions for harmonized clinical and patient-centred data capture
Author(s): ,
M Yong
Affiliations:
Imperial College, London
,
L Yang
Affiliations:
Imperial College, London
,
J Raffel
Affiliations:
Imperial College, London
,
M Craner
Affiliations:
University of Oxford, Oxford
,
C Hemmingway
Affiliations:
Great Ormond Street Hospital for Children
,
G Giovanonni
Affiliations:
Queen Mary University London, Blizard Institute, Barts and the London School of Medicine and Dentistry, London
,
J Overell
Affiliations:
Glasgow MS Clinical Research Centre, Institute of Neurological Sciences, Glasgow
,
R Hyde
Affiliations:
Biogen, Inc., Maidenhead, United Kingdom
,
J van Beek
Affiliations:
Biogen, Inc., Maidenhead, United Kingdom
,
F Thomas
Affiliations:
Biogen, Inc., Maidenhead, United Kingdom
,
Y Guo
Affiliations:
Imperial College, London
P Matthews
Affiliations:
Imperial College, London
ECTRIMS Learn. Yong M. 09/16/16; 146739; P899
May Yong
May Yong
Contributions
Abstract

Abstract: P899

Type: Poster

Abstract Category: Clinical aspects of MS - Clinical assessment tools

Objective: Optimisation of Prognosis and Treatment in Multiple Sclerosis Portal (OPTIMISE) is a clinician and patient data entry tool. Development work has been guided by user requirements through a deliberative process, with the objective of designing time and cost-saving data collection solutions to support improvements in patient care.

Background: Current UK data collection efforts for pharmacovigilance and clinical effectiveness research in multiple sclerosis (MS) are not comprehensive or ideally standardised.

Desing/Methods: OPTIMISE features include secure data entry, project customization of data collection elements, ability for data sharing and access in offline and online modes. An iterative programme embedding technical design with evolving user requirements was undertaken over 2015-16. For this, clinicians, research nurses and patients participated in stakeholder meetings to review the software capabilities and refine requirements for harmonised MS clinical and patient centred data capture sustainable as part of routine MS clinical care delivery.

Results: The OPTIMISE platform is an open-sourced, cross platform application that works on PCs and tablets. It provides an entry tool for secure data sharing, with pipelines to other data management tools such as XNAT for imaging, and tranSMART for data analysis.

Stakeholder meetings led to addition of capabilities for generation of clinic notes and visualization of individual clinical trajectories to support care decisions. Current development work is further simplifying the user interface, adding fields to better support pharmacovigilance and including reminder “flags” for scheduling safety monitoring tests.

Additional requests from researchers will ensure that OPTIMISE data can be mapped onto data from other sources such as iMED and MS Registry, so that data collated using OPTIMISE can be aggregated easily with that from other sources.

Conclusion: A public instance of a clinician portal will have been available for open distribution in May 2016 at http://www.optimise-ms.org/portal. An audit of software users taking into account user experiences, data quality and perceived clinical value will be performed before release of OPTIMISE V2.0 in late 2016.

Disclosure: M. Yong - Nothing to disclose

L. Yang - Nothing to disclose

J. Raffel - Nothing to disclose

M. Craner - Nothing to disclose

C. Hemingway - Nothing to disclose

G. Giovanonni - Served as an advisor or consultant for: AbbVie Inc.; Biogen Idec Inc.; Canbrex Corporation; EMD Serono, Inc.; FivePrime Therapeutics; Genzyme Corporation; GW Pharmaceuticals; Ironwood Pharmaceuticals, Inc.; Novartis Pharmaceuticals Corporation; Roche; Sanofi; Synthon BV; Teva Pharmaceuticals Industries Ltd.; Vertex Pharmaceuticals IncorporatedServed as a speaker or a member of a speakers bureau for: Biogen Idec Inc.; Genzyme Corporation; GW Pharmaceuticals; Novartis Pharmaceuticals Corporation; Sanofi

J. Overell - Nothing to disclose

R. Hyde - I am an employee of Biogen and hold stock options in company

J. van Beek - I am an employee of Biogen and hold stock options in company

F. Thomas - I am an employee of Biogen and hold stock options in company

Y. Guo - Nothing to disclose

P.M. Matthews - PMM acknowledges research support from Biogen and GlaxoSmithKline and has received honoraria or speakers fees from Novartis, Biogen, IXICO, Adelphi Communications and Transparency Life Sciences.

Abstract: P899

Type: Poster

Abstract Category: Clinical aspects of MS - Clinical assessment tools

Objective: Optimisation of Prognosis and Treatment in Multiple Sclerosis Portal (OPTIMISE) is a clinician and patient data entry tool. Development work has been guided by user requirements through a deliberative process, with the objective of designing time and cost-saving data collection solutions to support improvements in patient care.

Background: Current UK data collection efforts for pharmacovigilance and clinical effectiveness research in multiple sclerosis (MS) are not comprehensive or ideally standardised.

Desing/Methods: OPTIMISE features include secure data entry, project customization of data collection elements, ability for data sharing and access in offline and online modes. An iterative programme embedding technical design with evolving user requirements was undertaken over 2015-16. For this, clinicians, research nurses and patients participated in stakeholder meetings to review the software capabilities and refine requirements for harmonised MS clinical and patient centred data capture sustainable as part of routine MS clinical care delivery.

Results: The OPTIMISE platform is an open-sourced, cross platform application that works on PCs and tablets. It provides an entry tool for secure data sharing, with pipelines to other data management tools such as XNAT for imaging, and tranSMART for data analysis.

Stakeholder meetings led to addition of capabilities for generation of clinic notes and visualization of individual clinical trajectories to support care decisions. Current development work is further simplifying the user interface, adding fields to better support pharmacovigilance and including reminder “flags” for scheduling safety monitoring tests.

Additional requests from researchers will ensure that OPTIMISE data can be mapped onto data from other sources such as iMED and MS Registry, so that data collated using OPTIMISE can be aggregated easily with that from other sources.

Conclusion: A public instance of a clinician portal will have been available for open distribution in May 2016 at http://www.optimise-ms.org/portal. An audit of software users taking into account user experiences, data quality and perceived clinical value will be performed before release of OPTIMISE V2.0 in late 2016.

Disclosure: M. Yong - Nothing to disclose

L. Yang - Nothing to disclose

J. Raffel - Nothing to disclose

M. Craner - Nothing to disclose

C. Hemingway - Nothing to disclose

G. Giovanonni - Served as an advisor or consultant for: AbbVie Inc.; Biogen Idec Inc.; Canbrex Corporation; EMD Serono, Inc.; FivePrime Therapeutics; Genzyme Corporation; GW Pharmaceuticals; Ironwood Pharmaceuticals, Inc.; Novartis Pharmaceuticals Corporation; Roche; Sanofi; Synthon BV; Teva Pharmaceuticals Industries Ltd.; Vertex Pharmaceuticals IncorporatedServed as a speaker or a member of a speakers bureau for: Biogen Idec Inc.; Genzyme Corporation; GW Pharmaceuticals; Novartis Pharmaceuticals Corporation; Sanofi

J. Overell - Nothing to disclose

R. Hyde - I am an employee of Biogen and hold stock options in company

J. van Beek - I am an employee of Biogen and hold stock options in company

F. Thomas - I am an employee of Biogen and hold stock options in company

Y. Guo - Nothing to disclose

P.M. Matthews - PMM acknowledges research support from Biogen and GlaxoSmithKline and has received honoraria or speakers fees from Novartis, Biogen, IXICO, Adelphi Communications and Transparency Life Sciences.

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