Patient Power Revolution in Multiple Sclerosis: Navigating the New Frontier

Abstract A debate on shared decision making in multiple sclerosis (MS) was led by a patient advocate and leading neurologists from the MS in the 21st Century Steering Group. Key themes and salient points which emerged from the debate and audience discussions are reported in this article. Arguments a...

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Main Authors: David Yeandle, Peter Rieckmann, Gavin Giovannoni, Nektaria Alexandri, Dawn Langdon
Format: Article
Language:English
Published: Adis, Springer Healthcare 2018-11-01
Series:Neurology and Therapy
Subjects:
Online Access:http://link.springer.com/article/10.1007/s40120-018-0118-8
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spelling doaj-5f0e8d0968ca4e1795a8282753129c2c2020-11-25T02:02:27ZengAdis, Springer HealthcareNeurology and Therapy2193-82532193-65362018-11-017217918710.1007/s40120-018-0118-8Patient Power Revolution in Multiple Sclerosis: Navigating the New FrontierDavid Yeandle0Peter Rieckmann1Gavin Giovannoni2Nektaria Alexandri3Dawn Langdon4Member of the MS in the 21st Century Steering GroupMedical Park, LoiplBlizard Institute, Barts and the London School of Medicine and DentistryGlobal Medical Affairs, Neurology and Immunology, Merck KGaARoyal Holloway, University of LondonAbstract A debate on shared decision making in multiple sclerosis (MS) was led by a patient advocate and leading neurologists from the MS in the 21st Century Steering Group. Key themes and salient points which emerged from the debate and audience discussions are reported in this article. Arguments against shared decision making included the fact that physicians study and practice for years to reach their level of expertise, and that the level of understanding required to make these decisions may not be possible to communicate to patients within time-limited consultations. Furthermore, unreliable online information, information overload or information with marketing bias may also cloud patients’ judgements. Arguments for patient engagement focussed on how ownership of decisions can lead to improved adherence and outcomes, and a strengthening of the physician–patient relationship. Shared decision making requires educating patients to make informed decisions and to understand the risks and consequences of their choices. However, shared decision making may not be the correct option for every patient, and the level of involvement must be driven by the patient. To support patients’ engagement and promote responsible management of their condition, physicians need to (1) foster and maintain a positive, ongoing relationship with their patients, and (2) provide patients with timely, accurate, and understandable information. There was broad agreement that the patient voice should be heard more in discussions around the future of MS care. MS in the 21st Century offers a model for patient involvement in partnership with MS healthcare specialists, and the steering group is currently considering these issues and developing tools and solutions to enhance patient–physician communication and relationships. Funding Merck KGaA, Darmstadt, Germany.http://link.springer.com/article/10.1007/s40120-018-0118-8CommunicationEducationMultiple sclerosisMS in the 21st CenturyPatient engagementPatient voice
collection DOAJ
language English
format Article
sources DOAJ
author David Yeandle
Peter Rieckmann
Gavin Giovannoni
Nektaria Alexandri
Dawn Langdon
spellingShingle David Yeandle
Peter Rieckmann
Gavin Giovannoni
Nektaria Alexandri
Dawn Langdon
Patient Power Revolution in Multiple Sclerosis: Navigating the New Frontier
Neurology and Therapy
Communication
Education
Multiple sclerosis
MS in the 21st Century
Patient engagement
Patient voice
author_facet David Yeandle
Peter Rieckmann
Gavin Giovannoni
Nektaria Alexandri
Dawn Langdon
author_sort David Yeandle
title Patient Power Revolution in Multiple Sclerosis: Navigating the New Frontier
title_short Patient Power Revolution in Multiple Sclerosis: Navigating the New Frontier
title_full Patient Power Revolution in Multiple Sclerosis: Navigating the New Frontier
title_fullStr Patient Power Revolution in Multiple Sclerosis: Navigating the New Frontier
title_full_unstemmed Patient Power Revolution in Multiple Sclerosis: Navigating the New Frontier
title_sort patient power revolution in multiple sclerosis: navigating the new frontier
publisher Adis, Springer Healthcare
series Neurology and Therapy
issn 2193-8253
2193-6536
publishDate 2018-11-01
description Abstract A debate on shared decision making in multiple sclerosis (MS) was led by a patient advocate and leading neurologists from the MS in the 21st Century Steering Group. Key themes and salient points which emerged from the debate and audience discussions are reported in this article. Arguments against shared decision making included the fact that physicians study and practice for years to reach their level of expertise, and that the level of understanding required to make these decisions may not be possible to communicate to patients within time-limited consultations. Furthermore, unreliable online information, information overload or information with marketing bias may also cloud patients’ judgements. Arguments for patient engagement focussed on how ownership of decisions can lead to improved adherence and outcomes, and a strengthening of the physician–patient relationship. Shared decision making requires educating patients to make informed decisions and to understand the risks and consequences of their choices. However, shared decision making may not be the correct option for every patient, and the level of involvement must be driven by the patient. To support patients’ engagement and promote responsible management of their condition, physicians need to (1) foster and maintain a positive, ongoing relationship with their patients, and (2) provide patients with timely, accurate, and understandable information. There was broad agreement that the patient voice should be heard more in discussions around the future of MS care. MS in the 21st Century offers a model for patient involvement in partnership with MS healthcare specialists, and the steering group is currently considering these issues and developing tools and solutions to enhance patient–physician communication and relationships. Funding Merck KGaA, Darmstadt, Germany.
topic Communication
Education
Multiple sclerosis
MS in the 21st Century
Patient engagement
Patient voice
url http://link.springer.com/article/10.1007/s40120-018-0118-8
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