“Engagement should be a two-way conversation, and it’s important to show how people’s input makes a real difference.”
Can you introduce yourself?
Hello! I’m Jasmine Blane, a fourth-year DPhil student in the Department of Psychiatry, working with the Oxford Brain Health Clinic. My research explores how digital cognitive assessments can support people living with dementia in real-world clinical settings. I’ve been active in dementia research since 2017, starting as a research assistant before beginning my doctorate in 2021.
What first inspired you to get involved in public engagement?
My journey into public engagement began as a research assistant, presenting at science fairs and open days. But it was during my DPhil that I truly understood the power of patient and public involvement (PPI). To create digital cognitive assessments that really help people with memory impairment, I realised we must listen to their lived experiences. Joining a dementia PPI advisory group and working directly with advisors was a game-changer for me, moving from simply sharing information to co-creating solutions.
Can you share a recent project you’ve worked on and its impact?
In my DPhil, I’ve embedded PPI collaboration and co-production throughout the research cycle as I develop a remote follow-up study for Oxford Brain Health Clinic patients. Collaborating with people living with memory impairments, their relatives, and the public through workshops, surveys, and user testing has been invaluable. For instance, PPI advisors helped to identify key dementia-related changes they wished they’d known about at diagnosis; this formed the basis of the outcome measures included in the study. This continued input helped shape study, its design, aim and measurement tools. One of the PPI advisors is now a co-author as I write up and share the findings and roll out the assessments within the Brain Health Clinic.
What challenges you face when communicating complex health information and how do you address them?
One of the biggest challenges is balancing clarity and accuracy—avoiding jargon without oversimplifying. PPI advisors are often very engaged and want to understand the science. I explain key terms clearly and use analogies where I can. Having a glossary or visual aids helps too. As always, you need to tailor your approach to the audience, whether it's patients, relatives, or the public, as each group has different levels of familiarity with the subject. In our theme, we present to our colleagues first for initial feedback before delivering to our PPI advisory group. Also, I always ask PPI advisors for feedback afterwards, to make sure I’m pitching things at the right level. PPI advisors are our bridge between science and the public, so if you’re unsure how to communicate with the public, it can help to start with PPI advisors.
Have you used any innovative methods to reach underrepresented communities?
I’ve tried to make a conscious effort to ensure a balance between people living with memory impairment and their loved ones. Working with local dementia charities and memory clinics has helped reach people who might not usually get involved, but it is a challenge. We’ve held activities in community settings and offered flexible ways to get involved in PPI, which has helped reduce some barriers. One of our PPI advisors gave a talk about the benefits of PPI at a recent patient event, which helped reach new people.
How do you measure the impact of your engagement activities?
It’s tricky. Of course, there’s no control group where we do the research without the PPI input, but it's easy to see the changes made to the study. Thanks to PPI involvement, patients who take part in my research can choose how they participate, which has resulted in a more inclusive design. I’m starting to formally evaluate the impact of the PPI activities by collecting reflective feedback from advisors and researchers and using tools like GRIPP2 reporting checklists, which can be insightful for planning future activities. One of the most meaningful comments I’ve received from an advisor was that involvement in PPI gave them insight and hope. That kind of feedback reinforces the value of PPI.
How has your approach to engagement changed over time?
I used to view PPI as simply seeking feedback on documents. Now, I see it as an ongoing, collaborative process. I started attending every dementia PPI advisory group meeting, even when I didn’t have a specific question. Sometimes I’d bring an activity such as ‘planning poker’ to work out the practicalities of study visits and other times I shared updates. Regular involvement builds trust. The key lesson? Engagement should be a two-way conversation, and it’s important to show how people’s input makes a real difference.
What is one thing you wish more researchers understood about working with patients or the public?
PPI shouldn’t be a tick-box exercise, and it can happen at all stages of research, even data-only projects. Involving people with lived experience can genuinely improve your research. They often raise questions you hadn’t considered and help make your study more relevant and practical. That said, you don’t need to wait until you have a long-term collaborative project in mind. Even a simple conversation, explaining your research, key terminology or analysis plan, and asking for initial thoughts can generate a discussion. Start small and build from there.
Any final thoughts or advice for colleagues interested in engagement?
You don’t need to have all the answers before you begin. You’re not expected to do it alone; there are great resources, experienced colleagues, and existing advisory groups across the university who can help. I wouldn’t have started without the support of Shona Forster, our previous PPI lead for the Oxford Health BRC Dementia theme. She helped me plan activities during my DPhil and facilitated the advisory group, which made a huge difference when I started. I’ve now stepped into that role, so if you’re interested in dementia-focused PPI or any PPI advice, come and speak to me!
Contact: Jasmine Blane
University of Oxford email: Jasmine.blane@psych.ox.ac.uk
Oxford Health NHS email: Jasmine.blane@oxfordhealth.nhs.uk