TY - JOUR
T1 - The agenda of the global patient reported outcomes for multiple sclerosis (PROMS) initiative
T2 - Progresses and open questions
AU - Zaratin, Paola
AU - Vermersch, Patrick
AU - Amato, Maria Pia
AU - Brichetto, Giampaolo
AU - Coetzee, Timothy
AU - Cutter, Gary
AU - Edan, Gilles
AU - Giovannoni, Gavin
AU - Gray, Emma
AU - Hartung, Hans Peter
AU - Hobart, Jeremy
AU - Helme, Anne
AU - Hyde, Robert
AU - Khan, Usman
AU - Leocani, Letizia
AU - Mantovani, Lorenzo Giovanni
AU - McBurney, Robert
AU - Montalban, Xavier
AU - Penner, Iris-Katharina
AU - Uitdehaag, Bernard M. J.
AU - Valentine, Pamela
AU - Weiland, Helga
AU - Bertorello, Deborah
AU - Battaglia, Mario Alberto
AU - Baneke, Peer
AU - PROMS Initiative Working Groups
AU - Comi, Giancarlo
N1 - Funding Information: The core of the PROMS participatory governance is an innovative framework used to engage patients. Within this framework, patient advocacy organizations play an important role, as boundary organizations between science and society, to define and implement the ?how to? of patient engagement. Hence, the Engagement Coordination Team (ECT), including people affected by MS, was established to support the PROMS Initiative, integrating the unique experience of living with MS to the initiative. For the PROMS Initiative, the term ?patient? (person with the disease) refers to any individual with lived experience of the disease. While ?People affected by the disease? refers to a broader stakeholder group that is also engaged as part of the PROMS Initiative, and includes family members, caregivers and similar individuals/groups in addition to patients. The concept of the ECT was developed within the EU-funded RRI MULTI- ACT project (MULTI-ACT Patient Engagement Guidelines, 2020) and is also utilized by other relevant multi-stakeholder research initiatives (Progressive MS Alliance, People Affected by MS ECT, 2021). Applying the MULTI-ACT/ECT governance approach is considered instrumental to engage the relevant people affected by MS community, to reflect the diversity and complexity of their experiential knowledge. The ECT is leading the design and implementation of a plan for the engagement of people affected by MS in the PROMS agenda, as the initiative develops over time, in the implementation, monitoring and evaluation phases. The ECT is co-chaired by an MS organization representative and a person with or affected by MS. ECT members are also embedded within the working groups to jointly identify how and where to engage the MS community in a meaningful way, as well as help the Scientific Steering Committee and working groups to identify which priorities of the PROMS agenda will benefit from patient engagement activities. Funding Information: This work was supported by the Italian Multiple Sclerosis Foundation, the International Multiple Sclerosis Federation and the European Charcot Foundation. Publisher Copyright: © 2022 Elsevier B.V.
PY - 2022/5/1
Y1 - 2022/5/1
N2 - On 12 September 2019, the global Patient Reported Outcome for Multiple Sclerosis (PROMS) Initiative was launched at the 35th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). The multi-stakeholder PROMS Initiative is jointly led by the European Charcot Foundation (ECF) and the Multiple Sclerosis International Federation (MSIF), with the Italian Multiple Sclerosis Society (AISM) acting as the lead agency for and on behalf of the global MSIF movement. The initiative has the ambitious mission to (i) maximize the impact of science with and of patient input on the life of people affected by MS, and (ii) to represent a unified view on Patient-Reported Outcomes for MS to people affected by MS, healthcare providers, regulatory agencies and Health Technologies Assessments agencies. Equipped with an innovative participatory governance of an international and interdisciplinary network of different stakeholders, PROMS has the potential to guide future breakthroughs in MS patient-focused research and care. In this paper we present the progresses of the global PROMS Initiative and discuss the open questions that we aim to address.
AB - On 12 September 2019, the global Patient Reported Outcome for Multiple Sclerosis (PROMS) Initiative was launched at the 35th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). The multi-stakeholder PROMS Initiative is jointly led by the European Charcot Foundation (ECF) and the Multiple Sclerosis International Federation (MSIF), with the Italian Multiple Sclerosis Society (AISM) acting as the lead agency for and on behalf of the global MSIF movement. The initiative has the ambitious mission to (i) maximize the impact of science with and of patient input on the life of people affected by MS, and (ii) to represent a unified view on Patient-Reported Outcomes for MS to people affected by MS, healthcare providers, regulatory agencies and Health Technologies Assessments agencies. Equipped with an innovative participatory governance of an international and interdisciplinary network of different stakeholders, PROMS has the potential to guide future breakthroughs in MS patient-focused research and care. In this paper we present the progresses of the global PROMS Initiative and discuss the open questions that we aim to address.
KW - Digital Health
KW - Multiple Sclerosis progression
KW - Patient Reported Outcomes (PRO)
KW - Patient engagement
KW - Personalized care
KW - Responsible Research Innovation (RRI)
UR - http://www.scopus.com/inward/record.url?scp=85127091503&partnerID=8YFLogxK
U2 - https://doi.org/10.1016/j.msard.2022.103757
DO - https://doi.org/10.1016/j.msard.2022.103757
M3 - Comment/Letter to the editor
C2 - 35367873
SN - 2211-0348
VL - 61
JO - Multiple Sclerosis and Related Disorders
JF - Multiple Sclerosis and Related Disorders
M1 - 103757
ER -