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.
