8. Ethical Issues around PPI activities

Pandya-Wood et al’s (2017) ethically conscious framework for public involvement at the research design stage is helpful for the ethical considerations around PPI activity in support of a funding application. The issues identified, however, are also useful in considering the ethical aspects of most aspects of PPI activity:

Allocating sufficient time for public involvement

• Inadequate allocation of time could result in public involvement not having the fullest impact upon the funding application and may contribute to stress and burden felt by those involved.

Avoiding tokenism

• When preparing a funding proposal, public involvement activities at the research design stage are only listed in a ‘tick box’ without providing details anywhere else in the application.

Registering of research design stage public involvement work early with NHS Research and Development (R&D) Trust Office

• Trust R&D offices not being informed of research design stage public involvement funding (e.g. RDS Public Involvement Fund) and that involvement of the public may sometimes occur on NHS premises (which may raise indemnity issues).

Communicating clearly from the outset

• Not communicating clearly about public involvement roles and expectations at the research design stage can lead to disengaged and disenfranchised members of the public, unable to contribute to the study.
• In consultative activities, some group members can dominate if the consultation is not facilitated skilfully leading to some people not being able to communicate their ideas.

Entitling public contributors to stop their involvement for any unstated reason (s)

• In order that the public who get involved do not become overwhelmed by what they are asked to do

Operating ‘fairness of opportunity’

• Not taking issues around diversity and inclusion into account at the research design stage may result in disempowering, discriminatory research.

Differentiating between public involvement activities and qualitative research methods

• Reference to research design stage public involvement activities (e.g. consultations) using research terminology can confuse those who get involved about whether they are helping design the research or are participants in the research. It may also lead to conflicts of interest.
• Ambiguity around terminology may be linked to lack of clarity about exactly when ethical approval is required.

Working sensitively

• Some of those involved at the research design stage may find the experience emotionally upsetting (particularly those with lived/carer experience of the condition under investigation). They may be reminded of negative health experiences or learn of risk factors or negative long-term consequences of their condition for the first time. They may also become unwell making continued involvement difficult or impractical.

Being conscious of confidentiality

• Disclosure of personal, sensitive information during research design consultations (particularly when these take place in a group) can occur.
• Permissions to record the consultation may be overlooked.
• Research ideas may be disclosed by public reviewers who have not been appropriately instructed about protocol confidentiality.

Valuing, acknowledging and rewarding public involvement

• Not valuing, acknowledging and rewarding the contributions of the public involved at the research design stage may lead to them feeling disempowered and marginalised.
• There can be financial burdens for those involved at the research design stage, which if not addressed may deter people from getting involved.