Patient Reported Outcomes for MS
Putting the experience of people affected by MS at the heart of research, care and health policy
Last updated: 6th January 2023
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The Global Patient Reported Outcomes for MS (PROMS) Initiative is a unique collaboration, aiming to reach consensus on a set of standardised Patient Reported Outcomes (PROs) to be used in therapy development and healthcare. Importantly, PROMS is a multi-stakeholder initiative, including people affected by MS, researchers, clinicians, pharmaceutical companies, and MSIF’s member organisations as well as many other types of expert – to do together what we cannot achieve individually.
The Initiative, which was launched in 2019, is led and coordinated jointly by MSIF and the European Charcot Foundation (ECF), with Associazione Italiana Sclerosi Multipla (AISM) as the lead agency.
What are PROs/PROMs?
A patient-reported outcome (PRO) is a report of a person’s health condition that comes directly from the person, based on his/her own perception. PROs allow an individual to share their lived experience about their health or quality of life. Examples include how they feel, what symptoms they are experiencing, or what they are able to do.
A patient-reported outcome measure (PROM) is a measure or tool that records and reports health-related data from patients – passively or actively.
Why is this initiative needed?
Since the first MS disease modifying therapy (DMT) was launched, the treatment landscape has changed dramatically for people affected by MS. For most people who can access treatment, quality of life has improved significantly. There is, however, much that needs to be done to ensure that people affected by MS are systematically and effectively involved in drug discovery, clinical trials, regulation and clinical management of MS treatment. Without their experience, treatment decisions will not properly address the actual lives and priorities of the people who live with the disease. This can impact adherence, trust and quality of care; all of which can lead to worse outcomes for people with MS.
What does the collaboration do?
The main aim of the PROMS initiative is to ensure that treatment development, regulation and clinical management are all focused on improving the quality of life for people affected by MS. It will achieve this by putting the lived experience of people affected by MS central in research, care and healthcare decision making.
The scientific agenda is formed of four key areas: Research, Development and Validation; Clinical Management; eHealth; and Healthcare Systems. These four areas and the overall strategic direction of the Initiative are described in the summary diagram below, and you can read more about the goals of the initiative in our paper that was published in May 2022.
The Initiative also holds a multi-stakeholder annual meeting, to reflect on the past year’s progress as well as getting expert input to help shape future work. You can read more about the meeting held in 2021 here: Fixing an imperfect system through the voices of those with lived experience.
Who is involved in the PROMS initiative?
The PROMS initiative is mission-driven, with a multi-stakeholder governance structure. Over 60 people actively participate in the Initiative from across the globe. It is overseen by an Executive Committee comprising representatives from both MSIF and ECF, as well as one of the co-Chairs of the Engagement Coordination Team.
Ensuring that people affected by MS are at the centre of each decision made, the people affected by MS Engagement Coordination Team (ECT) is a key component of the Initiative. The concept of the ECT was developed within the EU funded MULTI-ACT project. You can read more about the MULTI-ACT model of participatory governance here. Members of the ECT sit on the working groups, carrying out parts of the work, and advising on the decisions made by the Scientific Steering Committee. The team has helped clinicians and academics from the working groups stop and consider their practice and assumptions, giving them ideas of how to effectively drive their work forward. By including people affected by MS so centrally in the Initiative, individuals from across the world have been given a voice while being treated as equals.
The Scientific Steering Committee, co-chaired by Dr Paola Zaratin from AISM and Professor Patrick Vermersch from ECF, oversees the scientific agenda and ensures there is coherence across the four key topic areas and the activities of the working groups.
The Working Groups, comprising people affected by MS, researchers, clinicians, industry and other experts from across the world, address the four key topics within the scientific agenda. The Working Groups established objectives for their topic area, decided on key projects to address these objectives, and the methods and activities that need to take place.
A Secretariat and programme management team comprising staff from AISM, ECF and MSIF, manages the operations of the initiative.
How can I get involved?
As the different projects within the PROMS initiative make progress, there will be opportunities for MS organisations and people affected by MS from across the globe to contribute their experiences. Stay in touch with the opportunities by signing up to our newsletter, or if you have specific questions, you can get in touch with Dr Anne Helme, Head of Research and Access at MSIF using this form: https://www.msif.org/about-us/contact-us/