Data Collection- Consumer Involvement

The guide explains what patient and public involvement (PPI) is, what it involves, and gives suggestions about how to involve contributors in all parts of the research cycle and knowledge translation. It also explains the importance of recognising and valuing PPI and gives examples of good practice. Users of the guide will be able to:
• Understand the value of PPI.
• Use different methods of involvement appropriate to their study.
• Demonstrate good practice in PPI.

For a role template, see p. 8.

Use these templates to draft your communications for research participants before, during and after your research activities.

The ability to communicate and explain research in plain language is a critical skill. Plain language is a clear way of sharing information that people can understand the first time they read or hear it.

This tool aims to support a systematic review of your material to ensure it follows plain language guidance and meets the needs of your intended audience.

The MRCT Center present a Toolkit and guidance document to provide practical resources to improve diverse representation of participants in clinical research. The Toolkit contains logic models, checklists, example materials for participants, and much more!

Download the full Toolkit or individual templates. Set out in clear sections, and providing a wealth of information and templates, there is also the opportunity to email the authors for further guidance.

For participants, creating and sharing their ‘I am’ Digital Story can be an important and powerful process, enabling agency and reflection. The Stories can also provide validation for participants when their experiences and perspectives are shared and heard. For example, a ‘screening’ of the ‘I am’ Digital Story with those who know the person well can be a very positive and affirming experience. Some people may choose to only share their Story in this way and / or with a small, selected group of people. Participants can invest a significant amount of time and energy creating an ‘I am’ Digital Story and may choose to share their Story more widely, often citing the reason for sharing their lived experiences to bring about positive change within the services they use and to the attitudes of others.

When creating videos with participants, the ‘I am’ Digital Stories process requires consideration of two central points: firstly, the inherently personal nature of the material used to create the Stories and secondly, that the participants or storytellers have agreed for people to view their Stories. The ‘I am’ Digital Stories are co-constructed with people whose voices may be marginalised from research. Consequently, one of the main roles of the researcher is to support storytellers to share their own views and experiences as much as possible.

This approach outlines a two-step process in requesting consent from participants when creating an ‘I am’ Digital Story. The two-step approach covers all stages of involving participants in projects.

It is important to use a two-step consent procedure for (1) the making and (2) sharing of ‘I am’ Digital Stories. This is because it is not possible for participants to give fully informed consent at the start of a project about whether and how they want their finished film (Story) to be shared. They first need to see the Story, and what it includes, before deciding whether they are happy for others to see it.

The method uses simple ‘I…’ statements template to help participants in describing themselves and their experiences. The ‘I…’ statements encourage an authentic, first-person perspective delivered by participants, which is beneficial in explaining the significance of an image or film clip to the viewer.

An ‘I am’ Digital Story project places the participant at the heart of the story. It is their voice and perspective that needs to be prioritised and shared; they are the storyteller. So, the first step in planning is to think carefully about who the storyteller is and how much autonomy they want and need at each step of the creation process.

The process is intended to be a co-construction with the storyteller in a way that is best tailored to their specific needs and preferences. Therefore, while the creation of the Story proceeds in stages, what each stage looks like in practice may vary depending on the level of support required for someone to create their Story.

This method uses filmmaking processes to create an ‘I am’ Digital Story of participants’ experiences – short videos that give information about participants. The method supports people who have been marginalised or ignored by research practice due to assumptions that their ‘voices are too hard to reach’.

The method engages marginalised voices in two ways:

1. By facilitating co-construction to enable their identities and lived experiences to be documented and shared the way they choose.

2. By making the output of the project accessible to the person at the heart of the research.

Participants are the storytellers in the process. Positioning them as ‘capable knowers’ provides epistemic justice as it enables more diverse participation and representation in research.

This template can help to guide health services when seeking consent from individuals to be involved in a co-design project.

This template can be used as a guide when you are developing content to call for expressions of interest for consumers to be involved a co-design project.

This template can help to guide health services when providing information to consumers about how they can be involved in a co-design project.

This suite of standardised Participant Information and Consent Forms (PICFs) has been developed by a specialist sub-group and initially approved by the National PICF Project on the 4 May 2016. including representatives from the Australian research community, to serve as a starting point for researchers. The forms are reviewed annually and updated as needed. The most recent version was released in July 2018. All of these documents were designed to provide guidance and assist researchers, institutions and HRECs in the conduct of multi-centre ethical review.

Consumer involvement cost calculator; Expression of interest form; involvement recruitment poster; consumer involvement agreement; consultancy agreement one-off event; privacy and confidentiality agreement; participant information sheet and consent form review template for consumers; Plain language summary generic; consumer reimbursement form; consumer involvement evaluation form; evaluation form one-off event; Project evaluation form Consumer Involvement.

A template thank you to consumers who attended F2F data collection research event.

A template invitation to consumers engaged to attend F2F data collection research event.

A checklist for planning F2F meetings with consumers participating in research, from planning to completion.

Three sample templates for a plain language statement for health services research.