The ThinkHand study: bringing researchers, clinicians, and people with Multiple Sclerosis (MS) together to focus on preserving upper limb function

Multiple Sclerosis (MS) is a neurological condition affecting approximately 2.9 million people worldwide and more than 150,000 in the UK. Historically, research has prioritised the preservation of mobility and lower limb function amongst people with the condition. This focus resulted in people who had already lost lower limb function being excluded from participating in research, and MS disease-modifying treatments (DMTs) only receiving a license if they improved walking ability.

The ThinkHand campaign, reviewed as a case study in Research Involvement and Engagement, used interdisciplinary collaboration, systems thinking, and co-creation with stakeholders to raise awareness of upper limb function amongst MS researchers, clinicians, and people with MS. Innovative use of surveys, social media posts, exhibitions and music, brought people with MS, healthcare professionals, charities, and researchers together to challenge embedded practices and create tools to support people with MS - particularly those at an advanced stage of the disease - to take part in research and measure their hand and arm function.

The study developed a low-cost, cardboard version of the standard 9 Hole Peg Test which could be easily distributed to people with MS at home, allowing them to monitor their upper limb function day-to-day. The tool has since been adopted by many research and clinical teams worldwide as a cost-effective method of monitoring hand function remotely. A home rehabilitation kit, the ‘Under and Over’, followed; this was found to demonstrate the feasibility and acceptability of delivering a remote program to individuals with advanced MS.

As a result of the campaign, two clinical trials were developed which took the upper limb functioning of people with more advanced MS as their primary outcome measures. The O’HAND and ChariotMS studies, could lead to the first MS drug(s) licensed to protect upper limb function, including in people with MS who have so far been completely excluded from participating in MS DMT trials.

Dr Alison Thomson, lead author and Senior Lecturer in Patient Public Involvement and Public Engagement in Science in the Centre for Preventive Neurology, said: “The campaign actively involved people with MS at every stage, demonstrating the potential of a patient-centred approach to tackling complex issues in health research. We worked in an open and responsive way making sure that we heard what people were MS were saying. The impact of this work is powerful because it demonstrates the outputs of a long term relationship with people living with MS.”