Patient Power Revolution in Multiple Sclerosis: Navigating the New Frontier

Abstract

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.