Kelly Kleinstuber tells us about her public engagement work for the PROTECT project, a nationwide study investigating ageing brain health. With support from the Springboard Fund, this wide-reaching project has brought in new public involvement through its PPI Ambassador programme.
Amount of award: £2830
The PROTECT study is an online ageing brain health research cohort of over 25,000 people aged over 40, which has had enormous success in generating research output at Exeter. The Springboard Fund responded to a need to evolve our Public and Patient Involvement (PPI) process, providing more structured support for PPI advisors and establishing the impact of our engagement activities.
The funding has enabled us to recruit and train a diverse group of 12 national PROTECT ‘Ambassadors’, who have formed our core PPI group for the study. We arranged a full-day training session in Exeter during which the Ambassadors could learn more about the background of the study and our research activities. This event aimed to build their knowledge and confidence in the PROTECT PPI process and research, enabling them to act as PPI representatives for the duration of the PROTECT Study. This was held in conjunction with follow-up meetings, in which panel members were consulted on PROTECT research questions. Not only did this align with major research programmes across our portfolio, but it has allowed us to ensure participants could contribute to activity directly relevant to their health and involvement. It is also a matter for which we really need PPI input, as the way in which we deliver this feedback is a highly sensitive issue.
We encountered a hurdle early on, as we had to rearrange the training session for later in the year due to unforeseen circumstances. Despite this hiccup, the response to our call out for Ambassadors was very positive and we received a lot of interest. When the group met in September 2024, participants attended from across the country, and provided positive feedback that demonstrated a keen interest in the history of the PROTECT study and its continued progress.
Since our induction day, the group has offered valuable input on our REACTIVE study, and is currently helping us to formulate a strategy for increasing the diversity of our participant cohort. We also plan to use the group’s expertise to redesign our website and user testing systems to ensure these are accessible and straightforward.
The opportunity to be able to recruit and train a core PPI group, with whom we can built long term relationships, is hugely beneficial to PROTECT. It ensures that we can provide meaningful impact, as the public will be represented in our research decisions for the duration of the PROTECT Study.