Module 3


Consumer and Community Involvement and ethics applications

Consumers and community members should be involved in developing ethics applications to ethics panels. Public involvement can increase assurance of the acceptability and feasibility of research processes to Research Ethics Committees and help inform the review of ethics applications.

Consumers can help  answer questions such as:

  • Does the research reflect the interests of people who are potential beneficiaries of the research?
  • Is the study design ethically acceptable to participants and are the practical needs and support needs being met?
  • Does the process of obtaining consent genuinely inform participants?
  • Will findings be shared with participants and the wider public, ensuring results are presented in accessible formats?

When involving consumers in research ethics applications, you should report who has been involved, how they have been involved, and how input from public contributors has shaped the ethics application.

A useful paper by Kristina Staley and Jim Elliot titled 'Public involvement could usefully inform ethical review, but rarely does: what are the implications?' highlights that consumer and community involvement in research ethics is often under-reported. Read the paper below.

Health Research Authority / INVOLVE (2016), Impact of public involvement on ethical aspects of research

‘Ethical Guidelines for Engaging with Patients as Partners in Health Research in Alberta’ contains relevant information about:

  • What does patient engagement in health research look like
  • Engagement Ethics
  • Conflicts of Interest and Commitments
  • Power Dynamics and Imbalances, Benefits and Harms
  • Confidentiality of Information.

Check out the document below.