PPIE

We believe that PPIE is integral to the research process and it has become widely recognised by funding bodies for its importance. 

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

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

DENIM has been designed in conjunction with members of the Sheffield MND Research Advisory Group and Better Outcomes in MND Advisory Group (BOND) and consulted members of the Cicely Saunders Public Involvement Forum. These groups include people living with MND, family members, carers and ex-carers, and members of the Motor Neuron Disease Association who are peer supporters and have extensive experience visiting people with MND in their homes.

We have also set up a PPIE advisory group of 6-8 people with lived experience of MND, co-chaired by our study co-applicant David Needham, and our project PPI lead Alys Griffiths. We meet with our PPIE group quarterly and they have played a vital role throughout the whole study process. 

Key aspects of our research methods shaped by our PPIE consultations include:

• The range of existing experience of NIV and the need for service improvement

• Recruitment (e.g. using existing and additional materials including videos to prepare people for the need for NIV, reflecting on their own experiences of this emotionally challenging time).

• Minimising the burden in both the trial and the intervention on more debilitated participants, offering support to overcome physical, health, and digital literacy barriers, and adding additional ways to complete these to retain participants’ independence.

• The appropriateness of study outcome measures.

• Inclusion of family members in the intervention and trial design.

• Goals of the intervention e.g. how to balance the need for achieving effective NIV whilst also sustaining patients’ quality of life and reducing carer burden.

• The acceptability of secure data sharing with approved telehealth companies.

• The desire for more frequent support from healthcare professionals.