The Midlands PPIE group for adults has concentrated on the Mood Disorders workstream, with a special focus on long term depression (LTD).
LTD affects nearly a third of people with major depression and is marked by resistance to conventional treatments like medication and therapy. Our group of contributors with lived experience of LTD has been instrumental in the development of a specialized digital platform designed to capture complex datasets on LTD. This consolidated information allows researchers to identify connections, investigate causes, and develop more effective treatments at an accelerated pace, paving the way for future trials.
Activities to Date within the Workstream
In collaboration with healthcare professionals and academic researchers, the PPIE group has actively guided decisions on which aspects of lived experience and clinical data should be collected from people affected by LTD. Here’s a snapshot of the group’s progress and contributions:
- Design and Content: Through six core meetings, 40 contributors have influenced the content and patient experience within the platform, focusing on essential data areas like chronic illness, dietary impact, and treatment side effects.
- Material Development: The PPIE group provided critical feedback to create a patient-friendly Minimum Data Set (MDS) for a questionnaire, ensuring that information is collected in a way that is accessible and comfortable for participants.
- Community and Outreach: Beyond internal meetings, the group has supported initiatives such as local community networking events and presentations to lived-experience groups, reinforcing engagement and awareness.
- Contributions to the LTD Platform Specification: Such as the inclusion of Anhedonia, ADHD/autism assessment, chronic illness history, and personal treatment effectiveness as ‘essential data’ to be collected. The group has also pushed for flexible data collection options, like paper forms or app input, and the incorporation of free text options for richer participant storytelling.
Next Steps for the Long Term Depression Workstream
The next phase focuses on ensuring that all participants have informed consent via the review and refinement of the patient information sheet. The PPIE group will support this process by evaluating the clarity of language and exploring options like video explanations. Additionally, plans are in place for a pilot version of the platform, where PPIE feedback will further refine the participant experience.
Reflections from PPIE Members
- “We feel like a community of valued people; there is friendly and professional communication, frequent feedback, humility, and curiosity for learning.”
- “The PPIE group is inclusive, informative, proactive, progressive, and well-organised.”
- “It is a ‘safe and brave’ space for people to express and share their own lived experiences and opinions.”
- “We appreciated the evidence that our input has been taken onboard and implemented into the iterative process of the platform content.”
This collaboration has highlighted how deeply valued contributions from those with lived experience are, shaping a supportive, respectful environment where each perspective directly enhances the trajectory of the Midlands Mental Health Mission.
