The ethics of patient and public involvement across the research process: towards partnership with people with aphasia

ABSTRACT

Background

Conducting Patient and Public Involvement (PPI) in health research is a way of building knowledge that incorporates the experience of service users, adds research impact, and helps avoid wasting resources on findings that have little relevance to people or cannot be implemented. We argue that there is a need to extend ethical considerations currently focused on research participants with aphasia to encompass and guide expectations of involvement in partnerships with people with aphasia across the research lifecycle.

Method

We use the 2018 revision of the Australian National Statement on Ethical Conduct in Human Research as the framework for this article. The National Statement is underpinned by values based on respect for human beings, research merit and integrity, justice, and beneficence. While the National Statement outlines the ethical standards for conducting human research with research participants in Australia, the ideas and principles within it draw on international norms. Building on the seven elements of the research process introduced in Chapter 3 of the National Statement, we develop a model for examining ethics and PPI across the research lifecycle. This model revolves around an extra phase, Element Zero, required for the preparation of PPI for both researchers and research partners with aphasia.

Results

There are many ethical considerations when involving patients and members of the public across the research lifecycle. Ethical questions that arise in relation to patients and the public as partners (whether in a role of consultant, advisor, collaborator or within user-controlled projects) may differ from those associated with participants. The nature of the relationships built through the PPI process requires a clear extension of the remit for research ethics to encompass ethical reflection both before the design of a project and after a project has ended as represented by the Ethics and PPI Research Lifecycle Model.

Conclusion

The role of people with aphasia as partners in research recognises their expertise and potential to improve the relevance and impact of research endeavours. Reflecting on the ethical implications of this is crucial, protecting, empowering and enabling both researchers and partners with aphasia to engage with each other through respectful and positive research relationships.

KEYWORDS:

• Aphasia
• ethics
• research
• involvement
• engagement

Acknowledgment

We would like to thank Lauren Wilson and Melissa Green for their assistance with creating the Figure in this paper.

Notes

1. https://bmjopen.bmj.com/pages/authors/#reporting_patient_and_public_involvement_in_research

2. Unfortunately, this is no longer referred to in the 2018 version of the Australian Code for the Responsible Conduct of Research (see Allen & Ehrlich, 2019).