Shaping our studies and trials
Patient and Public Involvement (PPI) means working in partnership with people so that their experiences help shape decisions, upcoming studies, and day to day processes at Scottish Brain Sciences.
Our PPI brings together people with lived experience of memory concerns, neurodegenerative conditions, cognitive changes, and those who simply have an interest in brain health. The panel’s insight helps ensure that our work reflects real-world needs and respects the people taking part in our studies.
Who can join the panel?
We welcome a broad mix of participants, study partners, carers, and members of the public. You do not need a clinical diagnosis or research background to join.
What does the panel do?
When opportunities arise, panel members can take part in a range of activities, depending on interests and availability. These include:
- Reviewing draft participant information sheets, consent forms and other study documents.
- Commenting on research tasks to check they are realistic, acceptable and accessible.
- Joining small online discussion groups to share lived experience and help shape research questions.
- Acting as mock participants to support staff training and strengthen communication skills.
- Providing feedback that helps prepare studies for Research Ethics Committee reviews.
Activities may take place in person or online. There is no obligation to take part in every activity, and many opportunities have limited places. We do, however, aim to share these fairly so that everyone on the panel has the chance to contribute over time.
PPI panel results
Over the past year, our panel has contributed to several projects informing the trial design of studies sponsored by biotechnology and pharmaceutical partners. This work has supported:
- the development of materials for studies on cognitive impairment and neurodegenerative conditions;
- helped improve communication tasks designed for early-stage research;
- provided insight into how new forms of testing might fit into standard clinical care.
Panel members have also taken part in Scottish Brain Sciences training sessions, giving staff first-hand feedback that improves the quality and sensitivity of our assessments.
Join our PPI panel
If you would like to hear about upcoming opportunities, please email involve@brainsciences.scot and we will add you to our mailing list. You will receive invitations to take part whenever a suitable activity arises, and you are free to choose the opportunities that suit you.
