A virtual user involvement forum for people living with motor neuron disease

Abstract

Consultant resources are freed for the treatment of more complex cases. Discussion The work to date has demonstrated the potential of e-triage to improve the effectiveness and efficiency of health-care delivery. It also suggests other opportunities for using e-referral, especially in cases where medical imaging forms a key component of the care pathway (Table 1). The work suggests a role for e-referral networks in the provision of up-to-date and accurate information on referral flows and provider performance, which again may improve the efficiency of health-care delivery.

Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research

“…Whilst others have developed online spaces for information provision [ 27 ] and sharing experiences [ 28 , 29 ], this is the first dedicated online forum with two-way dialogue between PPI members and researchers in palliative care and rehabilitation. Our evaluation builds on previous piloting of online methods to engage with people with motor neurone disease at our Institute [ 18 ], where despite concerns of the effects of this condition on feasibility, many were able to actively engage. It is known that PPI members favour multiple and flexible methods of PPI [ 13 , 14 ], particularly in palliative care in the context of fluctuating disease burden and caregiving responsibilities [ 14 ].…”

“…Secondly, many people living with advanced conditions, or caring for a person, find it difficult to attend face-to-face PPI. For patients, fatigue and mobility restrictions present challenges [ 18 ], and the importance of time when living with a life limiting condition. For carers (family or friends), work and/or family or caregiving commitments, or ill health, limit time available to support research.…”