Patient and Public Involvement and Engagement

Patient and Public Involvement and Engagement (PPIE)

PPIE is becoming widely recognised by researchers and funding bodies as being integral to the research process, but what is it? 

Involvement is when research is carried out with or by patients and members of the public. 

Engagement is the process of sharing information generated by research with patients and members of the public. 

EXPERTS-ALS arose directly from the patient initiated and led United 2 End MND campaign. The U2ENDMND campaign challenged both research funders and the research community to accelerate progress to find a cure for MND. The patient-led campaign recognised this required both an increase in funding for MND research but also to grow MND research capacity and coordinate this across the centres of excellence in the UK. The MND patient community is calling for a shift in the pace and scale of drug trials in MND. They want to see trials that produce clear and unambiguous results within shorter timeframes, advancing the field more rapidly

Co-Applicants Living with MND

Nicola Waters

Lee Millard

EXPERTS-ALS was co-designed with people living with ALS. Nicola and Lee bring their lived experience of MND and research participation, as well as significant connections with the wider MND community. They were involved throughout the application process, contributing to the development of the initial proposal and later reviewing and contributing to design changes as the proposal took shape. 

They were particularly involved in designing ways to reduce the burden of taking part in EXPERTS-ALS to participants, resulting in a reduced number of hospital visits in the protocol and ensuring that travel and subsistence costs were covered for participants and their carers. 

A major concern of the MND community and expressed by our PPI co-applicants was how, historically, trial progress had been communicated poorly to participants and to the wider MND community. We have therefore developed a comprehensive communications strategy and will prioritise the relationship with our study participants. The PPI co-applicants are taking an active role in leading on this strategy. 

You can find out about the study progress here. 

“EXPERTS-ALS will help us find drugs that could help people with MND faster than ever before. Time is one commodity MND patients don’t have much of. Because the platform will only select the drugs with the best chance of success to go on to larger trials, patients will spend more time on trials that are likely to help them. I am so excited by the prospect of this truly amazing science and delighted that the UK is leading the world in improving MND trials."

Lee Millard, who is living with MND and is also a co-applicant on the grant.

PPIE Members

As well as the PPI co-applicants, we are working closely with Sheffield Motor Neuron Disorders Research Advisory Group (SMNDRAG). Set up in 2008, the SMNDRAG is a well established group with a diverse range of patients and carers who meet regularly to give PPIE input into the MND research programmes at the University of Sheffield and further afield.

We have worked with several patient groups to design the study and incorporated their suggested changes and have the strong support of the leading MND charities (MND Association, MND Scotland, and My Name’5 Doddie Foundation) plus a dedicated ALS section within LifeArc - a life science medical research charity. 

The thriving UK MND Clinical Studies Group has prioritised support for EXPERTS-ALS. It meets monthly by teleconference and annually face-to-face and consists of senior ALS researchers as well as lay members, representing 23 regions across the UK. The programme has been shaped by the members, and encouraging and supporting recruitment to the study will be part of the portfolio management function of the group.

Across the three workstreams, our PPIE members will:

Given the large under-served population in MND trials, we are particularly focused on ensuring and supporting the application of the INCLUDE principles throughout EXPERTS-ALS.