Fixing an imperfect system through the voices of those with lived experience

Helga Weiland, Prof Gilles Edan, Dr Rob McBurney, Dr Paola Zaratin, and Prof Patrick Vermersch at the PROMS Plenary event in Baveno, Italy. Photo by Susanna van Tonder, PROMS ECT member

On 13 November 2021, the Global PROMS Initiative held a hybrid version of their annual meeting in Baveno in the Italian Lake District.

What is the PROMS Initiative?

‘PROMS’ stands for Patient Reported Outcomes (PROs) for MS. 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.

The PROMS initiative is a one-of-a-kind global initiative, aiming to reach consensus on a set of standardised PROs to be used in therapy development and healthcare. PROMS is an initiative rallying many players – or ‘stakeholders’ – including people affected by MS, researchers, clinicians, pharmaceutical companies, MSIF’s member organisations and funders. The Initiative is led and coordinated jointly by MSIF and the European Charcot Foundation, with Associazione Italiana Sclerosi Multipla (AISM) as the lead agency.

The scientific agenda of the PROMS Initiative is overseen by its Scientific Steering Committee, and structured into four key topics, each with a working group addressing it: Research, Development and Validation; Clinical Management; eHealth; and Healthcare Systems.

The PROMS Engagement Coordination Team (ECT) has been set up to ensure that people affected by MS are centre of each decision made. 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. This allows those affected by MS to help shape the PROMS Initiative’s strategy and activities.

 ‘We as patients and our voice will shape the future.’

– Susanna van Tonder, PROMS ECT Member, WG1 member

The PROMS 2021 annual meeting

The PROMS annual meeting welcomed over 100 participants on site and virtually. This included most of the Initiative’s current participants – the Engagement Coordination Team, the Executive Committee, the Scientific Steering Committee, the working group members – as well as invited speakers from a range of academic and healthcare disciplines. The aim of the event was to showcase the goals and progress of the working groups in the wider context of the research, care and health policy landscape – and importantly, the potential impact for people affected by MS.

The science of patient input

The keynote speaker was Professor Guendalina Graffigna from EngageMinds HUB, Milan, Italy, a researcher on the science of patient input – a field that has seen considerable growth in the past 10 years.

Professor Graffigna gave an overview of how patient engagement can be used to provide value in policy: by including the voice of those affected by the disease, their experience is legitimised. She highlighted the need to engage people affected by a disease at all stages of its development and from all walks of life, ensuring a breadth of perspectives is represented in the decision-making process.

Joanna Dronka-Skrzypczak, PROMS ECT member, captured a crucial aspect of patient involvement: everyone is a unique individual with a different life situation and form of MS – not a one-and-the-same uniform group of people affected by MS:

 ‘There’s no such thing as people with MS, but Joanna with MS, Susanna with MS, or Marni with MS.’

– Joanna Dronka-Skrzypczak, PROMS ECT member

Susanna van Tonder, Joanna Dronka-Skrzypczak, and Helga Weiland from the PROMS ECT at Hotel Dino in Baveno, Italy. Photo credit: Joanna Dronka-Skrzypczak, PROMS ECT member

Fixing an imperfect system through the voice of those with lived experience

Current ways of measuring the state of an individual with MS are not working well enough. It is clear that individuals with MS experience quality of life changes and disease worsening without it being clinically captured on MRI scans or scales such as the Expanded Disability Status Scale (EDSS). This is where patient reported outcomes (PROs) can make an impact – and the PROMS ECT is helping shape how we decide which symptoms or experiences (‘functional domains’) are most important for people with MS, and how they can be measured effectively.

Not only has the ECT helped to describe the complexity of these functional domains and how they impact individuals differently, members have also emphasised the interactions between the different domains. For instance, fatigue isn’t just ‘fatigue’ but instead affects many other aspects of life, such as coordination, cognition and social interactions to name a few. 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 paMS in the process, individuals from across the world have been given a voice while being treated as equals.

‘Being a part of the PROMS initiative and shaping the future of MS is a great privilege.’

– Susanna van Tonder, PROMS ECT member

What lies ahead for the PROMS Initiative?

During this annual meeting, the PROMS Initiative working groups shared a clear vision for their next steps. Literature reviews will be conducted, research will be undertaken, manufacturers of eHealth applications will be surveyed and healthcare systems will be assessed – all while involving people with MS in decision-making processes, at every step of the way.

We are now at a crucial point. We will continue to drive forward to get relevant and meaningful PROs used in research and development, by regulators, in MS clinics, by people affected MS, and by health technology agencies and payers.

By putting the individuals affected by MS at the centre, the PROMS Initiative has realised the value of the unique expertise that comes through lived experience. It is clear that if you want to have genuine impact on the lives of people affected by MS, engagement is not optional.

As PROMS ECT member Dr Ainhoa Ruiz del Agua so eloquently put it:

’You can’t research for people with MS without people with MS.’

Read more

You can read more about the PROMS Initiative here or you can get in touch with Dr Anne Helme, Head of Research and Access at MSIF using this form: