MORECare research methods guidance development: recommendations for presenting results to stakeholders from palliative and end of life care research

Aims: To identify best practice about how palliative and end of life (P&EoLC) research outputs should be presented to key stakeholders [clinicians, managers and service users]. Methods: We conducted 3 consultation workshops with CECo: 2 with patients/carers, 1 with clinicians/managers about how P&EoLC research results should be presented. Prior to workshops participants were sent P&EoLC research overviews aimed at the public. Clinicians/managers were also sent journal abstracts. Following discussion, nominal group techniques were used to produce recommendations for how research should be presented which were rated. Narrative comments were collected. Results: Service user workshops comprised 18 participants making 41 recommendations. There was consensus that clarity of information and use of lay language was most important. Also more than primary endpoints should be given; include quality of life and a description of ‘what it was like to be on a study’. Users wanted independent indicators of quality such as a star rating system. Links to more information or help were needed as results could be upsetting. Despite lengthy discussion no consensus was reached on whether there should be explicit reference to P&EoLC. Clinician/manager workshops comprised 12 participants making 19 recommendations. The main recommendation was the need to define what terms mean: end of life, palliative care, advanced care. More direct information about clinical and financial implications of research should be available. They wanted abstracts to be more accessible and readable. Conclusions: Researchers need to be aware of numerous audiences when preparing research outputs. Increasingly lay people access research findings themselves via the internet, highlighting the need for clear and relevant research reports. Clinicians want reports that show both clinical and financial implications for practice. No consensus could be reached on use of terminology, replicating the EAPC 2009 position paper