Beyond scientific rigour: funding cancer research of public value

Abstract

Objective: To identify the values deemed by cancer consumers and community members to be important in judging research, and develop an appraisal instrument for the inclusion of consumer and community values in cancer research funding decisions in an independent review process.

Background: Improvement in the level and quality of consumer involvement in research processes is becoming increasingly recognised as an important area of development in research governance. It was identified that while the current practice of selecting research based on scientific merit satisfies the need to fund research with the best scientific quality and potential for success, this may not necessarily satisfy all the needs and expectations of cancer consumers and the wider community.

Methods: A research team was established to undertake the qualitative study. A combination of focus groups and semi-structured in-depth telephone interviews were conducted to collect and verify information about the values held by cancer consumers and the wider community with regard to research.

Results: Consumer review criteria to guide consumers in judging the value of research, optimal rating scales to use with these criteria and views on how consumer needs should be incorporated into the process of judging and allocating research grants (e.g. the relative weight that should be given to scientific and consumer review) have been formally identified by this research.

Conclusions: The findings of this study clarify consumer and community values regarding cancer research funding and offer a means to evaluate research that address these values.