Principles for ethical Consumer and Community Involvement
Pandya-Wood and colleagues have developed a framework to help researchers and consumers work together in ways that are ethical during the early design stage of a project. We have adapted the key points from this article below:
- Allocating sufficient time for consumer and community involvement
- Avoiding tokenism
- Communicating clearly from the outset
- Entitling consumers to stop their involvement for any unstated reasons
- Ensuring fairness of opportunity
- Differentiating qualitative research methods and consumer and community involvement activities
- Working sensitively
- Being conscious of confidentiality
- Valuing, acknowledging and rewarding public involvement.
The more engaged the people are in developing research proposals, the better. One, it will improve in terms of participation by the community, potential participants, and two, right up front it will raise the issues that consumers may have about being engaged in health research.