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Table 1 Intended and Actual involvement opportunities in doctoral research

From: Patient and public involvement in doctoral research: reflections and experiences of the PPI contributors and researcher

Timescale

Intended Involvement in research activities

Actual involvement in research activities

Training provided by SD

Impact

Short-term (10/2013–06/2014)

- Involvement in preparing PhD proposal for funding

- Reviewing the proposal and providing feedback

- Involvement in systematic review

o Reviewing and commenting on the review protocol

o Further stages of the systematic review

- Involvement in preparing PhD proposal for funding

- Involvement in systematic review

o Reviewing and commenting on review protocol

- Educational session on what a systematic review is and the process involved when undertaking a review.

- Validated the need to explore the topic area and develop research question.

- Additional terms to search strategy, definition of BAME groups when exploring from an international perspective

Medium-term (07/2014–12/2015)

- Reviewing and commenting on:

o Study protocol

o Ethics application form, especially those sections that need to be writing in lay language/lay summary

o Participant information sheets and consent forms

o Topic guide for interviews

- Reviewing and commenting on:

o Study protocol

o Ethics application form, especially those sections that need to be written in lay language/lay summary

o Participant information sheets and consent forms

o Topic guide for interviews

o Practice interview

- None

- Ensured information sheet and consent form was in plain English and jargon free

- Changes to wording of topic guide and order of questions, re-define public involvement

- Practice interviews increased researcher confidence

Long-term (05/2015–09/2017)

o Participant recruitment strategies

o Data analysis

o Dissemination of research findings (co-organising and facilitating the dissemination event).

o Co-authoring documents, for example: summaries of research findings, publications

o Participant recruitment strategies

o Data analysis

o Dissemination of research findings through co-facilitation of the event

o Lay summary part of doctoral thesis

o Co-author reflective paper

- Educational session on what a thematic analysis is and the processes involved

- Enabled swift recruitment of study participants

- Discussing findings helped identify other topics that required further exploration

- Co-facilitation of dissemination event ensured engagement of all participants and co-authoring papers to share experiences from different perspectives.