The relationship between prioritising gaps in knowledge about the effects of treatment and identifying core outcome sets

Uhm, Seilin S and Oliver, Sandy (2011) The relationship between prioritising gaps in knowledge about the effects of treatment and identifying core outcome sets. 2011 COMET Meeting: COMET Initiattive, , Bristol, United Kingdom. 11 - 12 Jul 2011.

Abstract

Background: This study addresses the challenges of service users, clinicians and researchers working together to achieve two different goals:
1) identifying the most important gaps in knowledge about the effects of treatments (treatment uncertainties),
2) identifying a core set of outcomes to be used by triallists and systematic reviewers.
Service users and clinicians have similar roles for both challenges: deciding which ‘treatment uncertainties’ and ‘core outcomes’ are important to them. Researchers have had a greater role in identifying core outcome sets than they have had in identifying important treatment uncertainties.

This study uses the example of preterm birth to explore how the roles of these groups differ for achieving the two different goals, and how methods of working together differ. Preterm birth is the most important single determinant of adverse infant outcome in terms of: survival; quality of life; psychosocial and emotional impact on the family; and costs for health services. The combination of highly technical research and highly emotive issues presents particular challenges to partnership working.

Methods: A James Lind Alliance Priority Setting Partnership will be established to identify treatment uncertainties shared by service users and clinicians. Simultaneous discussions between service users, clinicians and researchers will consider how best to draw on the priority setting work to inform the development of a core set of outcomes. Diaries, observations and interviews will investigate the roles of the different players as each stream of work progresses.

Results: This poster will present an evolving study design for identifying both ‘treatment uncertainties’ and core outcome sets. It will consider the new challenges are they appear, and suggest possible solutions.

Conclusion: Efforts to identify treatment uncertainties and core outcome sets share principles of being research based and collaborative, but they draw on research in different ways and shape collaborations differently.

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Contributors

Author: Seilin S Uhm

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