Table 1 Consumer involvement – Short Form of the Guidance for Reporting Involvement of Patients and the Public

1: Aim

To incorporate the lived experiences and expertise of consumers into all stages of the study.

2: Methods

The investigator team included a consumer investigator, the mother of an adolescent eye-gaze control technology user.

An Advisory Panel was established to collaborate with the investigators to broaden geographical representation and expertise. The Advisory Panel comprised a user of eye-gaze control technology, a parent of a young user of eye-gaze control technology, allied health professionals working as assistive technology consultants specialising in eye-gaze control technology (two occupational therapists, three speech pathologists) and one occupational therapist specialising in functional vision and its assessment. The Advisory Panel and investigator team had members from the United Kingdom, Belgium, Sweden, the United States of America and Australia. The Advisory Panel were purposively invited from amongst the research team’s networks to provide diversity of representation of stakeholder group and geographical location.

Consumers were recruited from amongst the researchers’ networks. Consumers signed a Terms of Reference which specified the background to the study, purpose and activities of the Stakeholder Advisory Panel, consumer roles and responsibilities, time frames involved and information about the operation of the Panel.

Consumers were involved at each stage of the project including input to the ethics application, reviewing participant information and communications, developing recruitment strategies and circulating the Delphi to their networks, generating items for the Delphi survey, pilot testing and analysis of each round of the Delphi survey, reviewing this publication, and collaborating on knowledge translation.

Communication was managed by video/teleconference and email.

The consumer investigator co-presented findings at an international conference (funded by research monies) and is a co-author on this paper.

The consumer investigator and consumer Advisory Panel members were reimbursed for their time from research funding.

3: Results

Outcomes

Consumer involvement had substantial impact on all stages of the research.

Comprehension of the recruitment material, participant information and each Delphi survey were improved and additional critical information included to ensure all were informative and accessible.

Clear advice was given about reducing the length and improving the format of the surveys to enhance readability and likelihood of participation.

Insightful perspectives about interpreting responses to Round 1 resulted in clarity of themes and statements to progress to Round 2.

The consumer perspectives on interpreting the findings to progress to the clinical guidelines were highly valuable.

4: Discussion

Outcomes

Consumer involvement was central to this study and effectively influenced the quality of each stage. The consumer investigator was involved very early and collaborated in shaping the study and at each stage thereafter.

5: Reflections

This research may have benefited by increased investigator efforts to more closely support consumers to be involved, and to increase the numbers of consumers, particularly users of eye-gaze control technology themselves, to harness greater representation and perspectives, and to have a stronger voice and impact. This support may include research education and taking time to closely communicate with individual consumers to ensure that they could engage as thoroughly as possible. It would also be useful to encourage consumers to communicate amongst themselves to support each other in their roles.