P.24 Consensus and collaboration approach to better defining and implementing harmonised standards of care across a healthcare system: Examples from DMD care

Abstract

Through the DMD care UK project, a collaborative initiative between clinicians and patients, we have established an extensive, methodologically robust consultation process across all aspects of Duchenne muscular dystrophy (DMD) care. Initial benchmarking of current clinical care in the UK [against international recommendations (SoC)] and surveys of patient experience have been followed by a review of evidence and expert opinion by a series of specialist working groups. These groups were established to focus on different aspects of care but are all interlinked to ensure a multidisciplinary approach to the care of DMD. Each group includes patients or patient representatives and clinical experts from the UK North Star Clinical Network of specialist neuromuscular centres. This has led to consensus-building across different centres in all areas of care. Results from the first phases, including guidance from the endocrine and cardiac working groups, will be presented as a powerful illustration of the benefits of this approach. This highly successful model means that DMD Care UK has already effected change. We demonstrate examples of this through: endorsement of the first groups' consensus-built recommendations by UK professional bodies; tangible awareness-raising amongst clinicians by facilitation of group to group cross-talk; increased patient-community engagement in SoC development and dissemination; increased clinician engagement and network-building; securing of funding for clinical psychology and neuropsychiatry posts to address the identified gaps in psychosocial support for DMD; the release of an emergency care app to ensure that people with DMD get prompt and appropriate care in an emergency. We propose that this model of consensus building, awareness raising and collaboration improves the SoC for patients and empowers them to become active participants in their care. This model could be extended to other disease areas and other health systems.