Co-creation by motor neurone disease patients and researchers

by | 9 Jul 2018

People with motor neurone disease (MND) have worked with doctors, designers and engineers to develop a device that improves their quality of life.
The ‘HeadUp’ collar is the result of a five-year project led by the University of Sheffield, Sheffield Hallam University and the NIHR Devices for Dignity (D4D) MedTech Cooperative hosted by Sheffield Teaching Hospitals.
The life-changing product, now available on the UK NHS, offers patients the support they need to perform daily activities like eating, reading and communicating. At the same time, it is flexible and comfortable, thanks to the use of an innovative thermoregulatory material originally designed by NASA to line space suits.

“Patients said there was nothing on the market or in the clinic that addressed neck weakness experienced by people with MND,” explains Dr Laura Evans, NIHR Sheffield Biomedical Research Centre – a one-year-old research centre partnered with the Sheffield Institute for Translational Neuroscience. “The available products included collars for trauma victims, which patients found to be too rigid, and foam collars which don’t give sufficient support. So, it was decided to develop something that worked for patients.”

With the help of designers, engineers and clinicians, patients tested around 100 collars, offering their expert user reviews on support and neck movement. The final product was launched in May 2018, after securing the CE mark required for medical devices in the EU and is already used by 25 NHS Trusts. Strong, flexible and adaptable, it could soon become accessible more widely for suitable patients and is available from Talar Made

“The HeadUp collar is designed for patients, with patients. This would not have happened without input from the MND patient involvement group that identified a need and helped to solve the problem,” Dr Evans told PFMD. “It has improved quality of life and inspired us to use this model of patient engagement in other disease areas.”
A deep commitment to patient engagement
The success story can be traced back to the long-standing commitment by academics, health professionals and hospital leadership in Sheffield to involve patients in their work. A Sheffield MND research advisory group established in 2009 meets at the Sheffield Institute for Translational Neuroscience (SITraN) giving patients, carers and former carers input into research at the University of Sheffield.
The group meets quarterly to review patient information sheets, research proposals and to engage with researchers on their needs. The regular exercise has created a sense of community among volunteers who provide peer support for one another, while giving researchers valuable insights. Volunteers also develop a deeper understanding of the R&D process.
Patients are part of the NIHR Sheffield Biomedical Research Centre’s (BRC) governance structure and have a seat on the organisation’s executive board. The ongoing relationship bridges the gap between patients and researchers, making research more user-centred.
In some instances, patients are asked for input on protocols that feature highly technical procedures. This can require direct discussions with researchers or clinicians – something the centre views as a win-win for patient representatives and scientists.

“A patient representative recently asked for more information on MR spectroscopy. We brought them together with a PhD student who explained the technique and what it is used for,” explains Dr Evans. “As a result, the student became more confident in talking about medical imaging and the patient saw this educational experience as a reward for the time they give to reviewing protocols.”

Patient panels
The Sheffield BRC has also worked with existing patient panels – such as the Parkinson’s UK patient involvement group – to explore the design and feasibility of proof of concept studies. This can help to improve recruitment and retention of participants and to prepare for subsequent regulatory approval.
Professor of movement disorders, Oliver Bandmann from SITraN, asked patients and carers to assess the feasibility of taking a new combination of medicines, to review the patient visit schedule, and to give feedback on the wearability and usability of a Fitbit-like device that monitors patients’ motor symptoms at home. Patients and researchers said they found the experience valuable and are likely to engage with this approach again in future.
Gaining momentum
These success stories are inspiring the NIHR Sheffield BRC to expand its use of patient panels, using the MND experience as a template. It has assembled groups of people affected by dementia and multiple sclerosis, and has plans to do the same for stroke.
If ‘HeadUp’ is any indicator of the potential of this approach, there will be no shortage of patients – or researchers – looking to join the conversation.


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