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.