PPIE Mood Disorders
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.
Contact Us
Your voice matters. Whether you’re a patient, carer, or member of the public with lived experience, we’d love for you to get involved in shaping the future of mental health research. Reach out to learn how you can participate or to share your thoughts on our work.
PPIE Children & Young People
Building a Youth-Focused Mental Health Research System
Our work with children and young people aims to establish a UK-wide system for early-stage mental health research, focusing on improving the measurement and tracking of mental health needs among young people. By leveraging innovative digital tools, we seek to attract industry support and develop more effective treatments for children and teenagers across diverse communities. Our key goals are to establish a Youth Advisory Group (YAG) and to create a platform for early-stage mental health trials and standardizing methods to measure and monitor symptoms and biomarkers.
Collaborating with Young People
In partnership with the McPin Foundation, we are developing a dynamic involvement strategy designed with and for young people, particularly from the Midlands' superdiverse population. Our aim is to foster meaningful involvement and ensure that young voices are integral to each project stage. We are committed to supporting researchers in adopting innovative PPIE approaches and empowering young people, particularly those who might not typically engage in mental health research, through training and skills development.
Achievements So Far:
- Recruited a motivated advisory group of young people aged 16-25 from across the UK.
- Conducted a series of online workshops where young members helped shape the design of the “Difficult to Treat Depression” (DTD) digital platform.
- Planned additional workshops focusing on ethics, testing, and evaluation to deepen engagement with young people.
Next Steps
- Develop a robust governance structure in collaboration with national Mental Health Mission (MHM) colleagues.
- Integrate insights from young people involved in the DTD project into planning future activities and group frameworks. Through a co-designed program, we aim to create a meaningful and empowering research experience.
- Organize an in-person “show and tell” workshop in Birmingham with industry partners.
- Engage in priority-setting discussions with young people from the local community to align research with their needs and perspectives.
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Contact Us
Your voice matters. Whether you’re a patient, carer, or member of the public with lived experience, we’d love for you to get involved in shaping the future of mental health research. Reach out to learn how you can participate or to share your thoughts on our work.
PPIE Psychosis
Involvement of experts by experience has been a critical component of the EPICare project since its inception as a research idea. At the pre-application stage, EPICare was brought to the Institute.
At the pre-application stage, EPICare was brought to the Institute for Mental Health Youth Advisory Group (YAG) – a diverse group of young people with lived experience of mental health challenges and/or supporting someone with lived experience of mental health challenges. A series of meetings with the YAG supported the team to understand the value and viability of the project from a public perspective, with input shaping various aspects of the study approach – for example, how to best involve experts by experience in the delivery of the project.
Once funded, a group of public members with direct lived experience of psychosis and/or supporting someone with lived experience of psychosis was put together to facilitate involvement of experts by experience in a series of online stakeholder meetings. These meetings sought to develop understandings around numerous practical, ethical and technical aspects of the CareLoop app that would form a critical component of EPICare.
Most recently, the EPICare project has been supported by a group of experts by experience with direct lived experience of psychosis and/or supporting someone with lived experience of psychosis within the last 5 years. This group is referred to as the EPICare Lived Experience Advisory Group (LEAG).
The LEAG have been working with the EPICare team since December 2023. In that time, the group have met online with the research team at time at regular intervals (every 2-3 months). Within these meetings, input has been sought on several aspects of the project that will affect both service users and clinicians.
App Design
Having been shown mock illustrations of CareLoop App and its functions, LEAG members provided feedback many design aspects including suitability of language, the order that features/information are presented and options regarding the visibility of data.
The input of LEAG members has been used to modify design, with notable examples including creation of a mood diary for service users, provision of options to reduce visibility of data to self and re-phrasing of information contained within the app.
Onboarding Materials
Research team members produced a script that could be used to clinicians to introduce the CareLoop app to service users. A draft of the script was brought before the LEAG with team members doing a read-through in a meeting and then facilitating a discussion around the accessibility and suitability of the draft immediately after so that feedback could be received in real time. Feedback from LEAG members was recorded and used to develop a new draft of the script, with further opportunities to provide outside of the meeting being provided by providing written feedback via e-mail.
Additionally, LEAG members have been involved in the development of a script that will be used to develop an onboarding video that can be used to introduce service users to the CareLoop app.
Website and EPICare Logo Design
LEAG members were presented design options for both the MHM website and EPICare logo and provided feedback on design options by provided feedback on preferences surrounding images, colours and fonts within the mock designs.
Future Activities ...
CareLoop
User testing – In forthcoming meetings, we will be piloting the CareLoop App with LEAG members. This will involve onboarding them onto the app, providing time for exploration of features and having facilitated discussion to gain insights on the experience of app use.
