'Making little ethical decisions all the time': examining an ethical framework for consumer and community involvement...

Consumer and community involvement (CCI) is widely recognised as an ethical imperative in health and biomedical research. However, there is a lack of evidence and guidance regarding ethical approaches. The aim of this research was to test and refine an existing ethical framework for consumer partnerships in research to enhance understanding of ethical issues and approaches to CCI in research.

A sub-analysis of a co-produced ethnographic study which explored the processes and outcomes of consumer engagement over three and a half years in a PhD research partnership, was conducted against an existing ethical framework for CCI. The framework included organisational ethics, research integrity, relational ethics, and research ethics. Participants included four consumers, two academics, and a PhD candidate in an Australian capital city. Two consumer co-researchers collaborated in this study across the research cycle. Data were obtained over three and a half years from six interviews, six focus groups, monthly online logs, field notes, and a reflexive diary. Descriptive statistics and qualitative content analysis were used to analyse 2035 units of data.

A total of 1911 (93.9%) units of data aligned to an ethical category. Hence, the research team were constantly encountering ethical decision-making. A combination of organisational ethics and relational ethics was most frequently coded (30.1%, n = 576), followed by relational ethics alone (24.3%, n = 465), and research integrity and relational ethics (n = 229, 12.0%). Qualitative analysis identified some ethical tensions and many more practical and planned ethical approaches to support meaningful research partnership and positive research processes and outcomes. Examples and quotes are provided against each of the four ethical categories to illustrate and expand on the framework. An update to the framework is provided.

The updated framework highlighted the complexities of CCI and focused beyond traditional research ethics to include relationships, organisational factors, and research integrity. The narrative of ethical issues being a challenge to overcome in CCI, needs to change. An emphasis on adopting a proactive approach to promote ethical and authentic team power sharing, reflection, and active communication is needed.