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Table 1 How our PPI met the six UK standards, and how it can be improved

From: The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot)

UK Standard

PPI meeting this standard

How PPI could have been improved

Inclusive opportunities

Workshops A and B were held at an early stage in the research process

Male and female advisors, stroke survivors and carers

Workshops held in non-threatening, familiar environments e.g., local church hall

Remuneration for time and travel offered

Increasing diversity within our PPI advisors would be beneficial. All our PPI advisors were white, British, middle to older aged stroke survivors or carers

Working together

Practical arrangements to facilitate shared working were employed

Opinions of PPI advisors were valued and respected and actioned where appropriate

The purpose of PPI within the study could have been openly discussed with PPI advisors with collaborative decision making and documented appropriately

Support and learning

One PPI advisor accessed GCP training

Two PPI advisors were trained to undertake the role of notetaker in the focus groups and one advisor trained to assist with analysis of the focus group

PPI advisors could have been invited to a meeting to discuss their learning needs

Governance

There was PPI advisor representation at all of the trial management meetings, with PPI being a standing agenda item

Advisors’ opinions were listened to and valued

Remuneration for PPI advisors’ attendance at meetings was built into the funding

Training to ensure PPI advisors were able to be assertive in meetings may have been valuable and should be considered in the future

Communications

Appropriate communication methods were used according to advisors’ preference e.g., offering to post out hard copies of documents

PPI and achievements are being shared

Initial meetings with PPI advisors could establish preferred communication methods, so all are aware

Impact

This article has been written in collaboration with one of our PPI advisors

The importance of PPI advisors’ contributions was highlighted when one of our PPI advisors presented with AMA (the lead researcher) at the UK Stroke Forum

The researchers have become even stronger advocates of PPI than previously, with greater insight of the benefits

An informal meeting with all the PPI advisors when the study was completed would have been valuable to help understand their opinions about their involvement in the research cycle for this study and to feed into further improving the PPI advisor’s contributions for future studies