- Case study #1: LOL-lab
- Case study #2: Developing the iKnife
- Case study #3: The Healthy Start, Happy Start Study
- Case study #4: Research priority-setting – how feasible is a festival approach?
- Case study #5: Establishing a public panel in research
- Case study #6: Evaluating a TB awareness animation
- Case study #7: Parents with experience of preterm birth help shape Imperial research
- Case study #8: Hackathons as a method for co-developing novel research tools
- Case Study #9: Inflammatory Bowel Disease (IBD) Patient Involvement in Research Day #IBDPRD
- Case Study #10: An interactive PPIE workshop on kidney transplant rejection
- Case study #11: The ALGeBRA Steering Group for breast cancer research
In conversation with: Rachael Ryan, Research Assistant
Working within: Centre for Psychiatry, Department of Medicine
What did you do?
The Healthy Start, Happy Start (HSHS) study aims to help parents better understand their child’s communication and behaviour, and to learn different ways of reacting. We set up a Study Advisory Group (SAG) and asked them for ideas on participant recruitment and materials. The group has developed over time to also consider how to explain different parts of the research to participants and how to best keep participants engaged.
We also applied for Biomedical Research Centre funding for a Patient and Public Involvement (PPI) project. We were successful and were able to fund the production of two videos. The first was embedded as a ‘Study-Within-A-Trial’, and compared a video of the participant information (Participant Information Clip) with a traditional Participant Information Sheet in the HSHS study. The SAG were involved in the content, structure and development of this video as an information sharing resource and their feedback was implemented throughout the design process. The second video was created as a public information sharing resource about epigenetics. The SAG were key in suggesting how epigenetics should be explained to the public and had clear ideas and suggestions as to what the video should cover.
What were you trying to achieve?
We wanted to enhance the participant’s experience of taking part in our research by having carefully considered involvement from representative members of the public on how our research should be conducted.
Who did you involve and how did you find the right people?
The Happy Start study is about young children and their behaviour. Taking into account the participants we were trying to recruit, our SAG included parents from local nurseries, nursery staff and people who had taken part in our pilot project. It was fantastic to have different stakeholders’ perspectives, and this really helped us understand how to share our information with study participants as well as talking to new families about the research
Were the people you involved given any training?
At the first session we went through the purpose of the SAG, to give members a sense of what their roles would be and what they could expect in meetings. We also discussed the background of the study as well as the wider context of the research. We acknowledged that each member was bringing their own experiences of either being a parent or working with children, and that for this reason we wanted their advice and thoughts on key aspects of the study. We provided them with useful documents, including a jargon buster, a terms of reference document (which outlined what they could expect from us, and what we expect from them) and copies of the study materials.
Did you achieve what you set out to do?
Our Study Advisory Group has really enhanced our project. Since they’ve been involved from the start, they’ve been able to see how their suggestions and feedback have influenced the trial. A key example is by advising us on how to reach our potentially hard-to-reach population (for us this was fathers). By following their suggestions on where to recruit these participants and listening to their practical ideas on how to involve them, we were able to increase the number of second caregivers taking part in the study. Having a ‘you said/we did’ style update at the start of each meeting also helped keep our members engaged.
Some SAG members also joined our Trial Steering Committee where they provide feedback in an oversight capacity. This ultimately strengthened any Ethics applications as we could show that we had considered how to explain new procedures and assessed the acceptability.
What impact did it have on the people involved?
We regularly had a slot in team meetings to discuss our SAG suggestions and to plan how we were going to involve them further. This has really helped the team think about public involvement as a key component to the trial. As an icebreaker during one our SAG meetings, we asked the group what they enjoyed about coming to our meetings. Comments included: enjoying being listened to and seeing how their feedback has made a difference; making a difference to child research as they are parents themselves; being an expert in their own right by being a member of the public, but with expertise in children in their own ways; and of course, having great food!
What was the most challenging part of doing PPI and how did you overcome it?
The most challenging part of our public involvement work has been finding a suitable venue that is open after work hours (this is when we run our meetings), has no charge and is in a central location. We have held meetings at the South Kensington Campus and in NHS buildings in the evenings, which has meant that members who work full time are still able to attend. We also send a Doodle poll well in advance to find which dates and time would suit the group best.
What advice would you give others interested in doing something like this?
Go for it! Whilst the prospect of PPI can seem daunting at times, there are lots of great resources within Imperial and online (visit INVOLVE) to help you get started. It’s helpful to have team discussions about how patients and/or the public can be involved because there are opportunities for their involvement at most stages of the research cycle. Ideally, if PPI is written into the grant proposal, then this helps fund your tea/coffee/sandwiches – these are really key to engagement if you’re asking people to take time out of their day. In addition to this we also provide members with a voucher to thank them for their contribution and an expense form to compensate them for any travel costs they may have incurred.
We’ve found it really useful to run our groups in the evening (18:30–20:30) so people are able to come after work. There aren’t many people who can make a time in the day for various reasons, e.g. work, childcare, other commitments.
Once you’ve asked people for their input, then always feedback what you have done with the information. This can be in whichever way you think is best – via email, a phone call, or in a meeting. Even if you couldn’t take on some of their suggestions, just explain why.
Finally, enjoy the PPI activities! Ultimately, it makes sense to involve patients and the public in your research, especially if they’re the ones you’re hoping to benefit at the end.
If you’ve got a public involvement story you’d like to share, please get it touch.