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Table 4 Ethical considerations for Patient Public Involvement

From: The informed consent process in health research with under-served populations: a realist review protocol

Role of public contributors The role of the public contributors will be made clear when they are invited to be part in the stakeholder group, through written information with the opportunity to discuss verbally if they wish. Their contributions will include developing a working definition of the term under-served, involvement in refining programme theory providing their ideas as to what is important when considering and refining programme theory, with sufficient time allocated to allow for discussion and flow of ideas.
Avoidance of tokenism Details of PPI contributions and how they will be utilised and shaped programme theory will be described in the review.
Opportunity to withdraw It will be clearly communicated to public contributors that they may withdraw their involvement at any stage in the review process without needing to provide a reason.
Fairness of opportunity The researcher will seek to engage pragmatically, with an already formed group that represents equality, diversity and inclusion. This will also be a limitation, because the scope of this review will not allow more time, or funds to engage with a larger group.
Sensitive approach A sensitive approach will be taken with the public contributors with every effort to ensure personal information is not revealed in relation to individuals that are involved, whilst being aware of any potentially, undesirable reactions of members of the group.
Confidentiality It will be clearly stated to public contributors that should any personal issues be discussed during the meetings, this information will remain confidential.
Valuing public contributions A pragmatic approach will be taken with a view to being flexible with technology, utilising what works best. Regular communication to all public contributors will be carried out with their involvement described within the review and how it was included.