Evaluation and lessons learned regarding Public Involvement: a panel advising on an Alzheimer’s disease and related dementia cohort study

Public involvement (PI) in research is increasingly requested, yet systematic evaluation is limited. This study evaluates whether a panel advising an Alzheimer’s Disease and Related Dementia’s (ADRD) Cohort Study fulfills PI quality criteria and leads to perceived Cohort Study improvement and describe lessons learned. A panel of 49 members of the public advised the Cohort Study through questionnaires and meetings. Panelists and Cohort Study researchers completed questionnaires based on PI quality criteria as formulated in the Patient Engagement Quality Guidance Framework, specifically developed to capture insights on the quality of PI. Findings were supplemented by reflections of the panel organizers and three panelists. Additionally, we outlined the panel’s aim and design to provide a practical example of PI in ADRD research. Of 49 panelists, 43 consented for use of their data for evaluation purposes (72% female (31/43), mean age 62 years, 82% (35/43) in good health). Response rates to the evaluation questionnaire were 37% for panelists (16/43) and 67% for researchers (4/6). Most panelists reported that the panel’s purpose (95%; 15/16) and communication were (very) clear (94%; 15/16), certainly adequate resources to provide input (75%; 12/16), and sufficient transparency (87%; 14/16). All felt respected and found it easy to participate in online panel questionnaires. However, 56% (9/16) found attending in-person meetings challenging due to time or travel. Researchers reported positive impact on Cohort Study quality, e.g., improved participant information letter, yet also highlighted the required time and effort to involve a panel and suggested to improve management of panelists’ expectations. Among the lessons learned are the value of offering multiple ways to participate, and the need for more communication between all parties involved. Engaging a PI panel was perceived to improve an ADRD Cohort Study and fulfilled most quality criteria from the Patient Engagement Quality Guidance Framework. However, results must be interpreted with caution due to potential consent bias. Dementia is a growing health concern worldwide. Today, around 50 million people are living with the condition, and this number is expected to rise to 152 million by 2050. At the moment, there are only limited treatment options. In this study, researchers worked with 49 members of the public, known as a panel, to support a long-term dementia research project. The panel gave advice through online surveys and in-person meetings. Afterwards both the researchers from the long-term dementia research project and panel members reflected on how the process worked. Most panel members felt that the purpose of the panel was clear, that communication was handled well, and that they were treated with respect. Panel members said it was easy to take part in online meetings and surveys, although a few said attending in-person meetings was more difficult. Researchers thought that the panel was very useful, for example, by helping to make written information for study participants easier to understand. However, they also pointed out that involving the public takes time and effort, and that it is important to set realistic expectations. The lessons learned suggest that offering different ways for people to take part, along with clear and open communication towards researchers and panel members, makes these panels more successful. Overall, the panel improved the dementia research study, though the conclusions should be interpreted carefully, as not every panel member gave feedback.