Stronger together; evaluating consumers and researchers working in partnership

TL;DR

This paper evaluates how consumers and researchers can work together in medical research, using a specific tool to assess their collaboration in a rectal cancer study.

Contribution

The study applies and evaluates the ACTA tool for assessing consumer involvement in a co-designed clinical trial.

Findings

Consumer involvement in the RECAP project was found to be meaningful, respectful, inclusive, and impactful.

The ACTA evaluation tool was considered appropriate and easy to use, though some questions were repetitive and lacked specificity.

Key considerations for consumer involvement included inclusivity, workload, communication, and remuneration.

Abstract

Consumer engagement in medical research should be early, ongoing, and meaningful, to improve patient-centred research design and outcomes. Evaluating the impact of consumer input builds the evidence base needed to sustain and improve ongoing involvement efforts. Multiple evaluation tools are available. Here we explore the landscape of evaluation tools and apply the Australian Clinical Trials Alliance (ACTA) tool to evaluate the impact and process of consumer involvement in a recently completed project.

The ACTA evaluation tool was administered to all consumers and research team members in the “RECAP” study. The RECAP study is co-designed as a single-arm trial that implemented registry-generated personalised care plans for patients with newly diagnosed rectal cancer. The ACTA evaluation tool responses underwent thematic analysis, and the research and consumer group assessed the utility of the tool.

The ACTA evaluation tool was completed by the entire team, including six consumers and four researchers. Thematic analysis highlighted inclusivity, workload, communication and remuneration as key considerations in the process of consumer involvement. Consumer impact was measured in terms of seven domains of critical research outcomes. Consumer involvement in the RECAP project was identified to be meaningful, respectful, inclusive, and impactful. The evaluation tool was considered appropriate by all respondents, who identified the ease of use, low burden and ability to address both the consumer impact and experience as positive factors. Identified areas for development included the repetitiveness and lack of specify of some questions, and the uncertainty about the desired length of response.

The ACTA evaluation tool was successfully administered to a team of consumers and researchers engaged in a recently completed trial with positive assessment of tool utility.

Consumer engagement in medical research should be early, ongoing, and meaningful, to improve research design and outcomes. Evaluating the impact of consumer input builds the evidence base needed to sustain and improve ongoing involvement efforts. Multiple evaluation tools are available. Here we explore the landscape of evaluation tools and apply the Australian Clinical Trials Alliance (ACTA) tool to evaluate the impact and process of consumer involvement in a recently completed project. The ACTA evaluation questionnaire was completed by all consumers and research team members in the “RECAP” study. The RECAP study is a co-designed trial that implemented registry-generated personalised care plans for patients with newly diagnosed rectal cancer. The ACTA evaluation tool responses were analysed, and the research and consumer group assessed the usefulness of the tool. Analysis highlighted inclusivity, workload, communication and remuneration as key considerations in the process of consumer involvement for this team of four researchers and six consumers. Consumer impact was measured in terms of pre-identified critical research outcomes. Consumer involvement in the RECAP project was identified to be meaningful, respectful, inclusive, and impactful. The evaluation tool was considered appropriate by all team members, who identified the ease of use, low burden and ability to address both the consumer impact and experience as positive factors. Identified areas for development included the repetitiveness and lack of specificity of some questions, and the uncertainty about the desired length of response.