We would like to thank you sincerely for taking part in our recent discussion about the idea to give people with Parkinson’s disease access to their own brain signals recorded by Deep Brain Stimulation (DBS).
Your insights were incredibly valuable and have already helped us shape how we take this project forward. Below is a short summary of what we learned from the group.
What we learned from you
You told us that the idea of seeing your own brain activity felt new and sometimes abstract, but that it made sense as long as it came with a clear explanation and, most importantly, practical meaning. You said you would like to know what to do with the information rather than what it means scientifically.
You encouraged us to focus on sharing simple, actionable insights, such as guidance about when to exercise, how sleep or stress affect your brain activity, or how medication timing relates to your symptoms. You told us that information should be shared regularly, in a way that fits naturally into everyday life.
When we asked how you would like the information displayed, you suggested a combination of formats, including clear graphs, short summaries, and voice options similar to a Fitbit report. You liked the idea of being able to ask questions such as “Is my exercise helping?”. You also mentioned that it is important to see progress over time, not just receive a single result.
Many of you already use fitness watches and/or activity tracking apps and liked their simplicity, target-setting, and daily feedback. You told us that the tool should be just as easy to use, quick, flexible, and with reminders or voice options that work around your routines.
You said that taking part in the research sounded feasible, as long as activities such as wearing an activity or sleep monitor are not intrusive and can fit around work or family life.
Most importantly, you told us that having access to your brain data could help you feel more in control of your condition and improve communication with clinicians, reducing the “guesswork” that can sometimes happen between appointments.
What else you told us
We also talked more broadly about DBS and Parkinson’s care. Many of you said you had to learn about DBS on your own, often from friends or online. Some of you felt that more consistent information and support should be available, especially about what DBS involves and the different types, such as adaptive DBS.
We also heard that people strongly dislike the levodopa challenge test, which is currently used to assess eligibility for DBS. You felt it can be unpleasant and stressful, and that clearer communication about why it is needed would be helpful.
How your feedback will help
Your ideas will directly influence how we design and test the tools. In particular, we will:
- Focus on actionable feedback rather than technical data.
- Build accessible, easy-to-use displays with voice and visual options.
- Provide clear explanations about what the signals mean and how to use them.
- Ensure the tool works flexibly around everyday life.
- Highlight the need for better patient information and support around DBS and the levodopa challenge test, including more information about why it’s needed.
Thank you again for your time, openness, and thoughtful discussion. Your feedback is helping us make the tool something that truly works with people with Parkinson’s.
With warm regards,
The Manchester Metropolitan University team