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Background The involvement of experts by experience in health research is a requirement from major funders across the world. One approach is Patient and Public Involvement (PPI) research advisory groups. This narrative review surfaced emerging practices in these groups based upon research papers that evaluated their own activities. Methods Papers published between 1/1/ 2014 and 10/1/2024 containing advisory group or related terms in the title or abstract were included. Articles had to focus on mental health and describe the evaluation of PPI research advisory groups. Articles where the PPI research advisory group was not the central focus were excluded. Results We identified 26 papers. Different terms were used and categorised as: Community Advisory Boards; Stakeholder Groups; PPI Groups; Young People Advisory Groups. There was a growth in literature over time; 42% of articles were published in 2023. Youth involvement was covered in 13 papers (50%). Many included a group member as an author (14 papers). Geographically most studies came from UK ( n  = 10), followed by Australia ( n  = 5) and Canada ( n  = 4). Our analysis identified nine themes and 123 sub-themes under: principles and values; group formation; running groups; facilitators; barriers; impacts on PPI group members; impacts on researchers; impacts on mental health research; recommendations. Commonalities in emerging practices included themes relating to: the importance of communication; an inclusive focus ensuring diversity of perspectives; choice and flexibility in how people are involved; creating safe spaces for involvement work; importance of detailed planning processes; and strategies to address power and hierarchy in research. Discussion and conclusion This field of practice is rapidly developing, building on well-established models such as Community Advisory Boards, underpinned by an epistemic justice value base. Our positionality led us to conclude more participatory evaluations from cross cultural partnerships delivering PPI research advisory groups would be beneficial to the mental health research ecosystem. This review would also benefit from an update to capture publications from 2024 onwards. Patient and public contribution The study was conceptualised and delivered by nine people working from a lived experience perspective in peer research and public involvement. All are authors on this paper.

Background Adverse events (AEs) are commonly reported in clinical studies using the Medical Dictionary for Regulatory Activities (MedDRA), an international standard for drug safety monitoring. However, the technical language of MedDRA makes it challenging for patients and clinicians to share understanding and therefore to make shared decisions about medical interventions. In this project, people with lived experience of depression and antidepressant treatment worked with clinicians and researchers to co-design an online dictionary of AEs associated with antidepressants, taking into account its ease of use and applicability to real-world settings. Methods Through a pre-defined literature search, we identified MedDRA-coded AEs from randomised controlled trials of antidepressants used in the treatment of depression. In collaboration with the McPin Foundation, four co-design workshops with a lived experience advisory panel (LEAP) and one independent focus group (FG) were conducted to produce user-friendly translations of AE terms. Guiding principles for translation were co-designed with McPin/LEAP members and defined before the finalisation of Clinical Codes (CCs, or non-technical terms to represent specific AE concepts). FG results were thematically analysed using the Framework Method. Results Starting from 522 trials identified by the search, 736 MedDRA-coded AE terms were translated into 187 CCs, which balanced key factors identified as important to the LEAP and FG (namely, breadth, specificity, generalisability, patient-understandability and acceptability). Work with the LEAP showed that a user-friendly language of AEs should aim to mitigate stigma, acknowledge the multiple levels of comprehension in ‘lay’ language and balance the need for semantic accuracy with user-friendliness. Guided by these principles, an online dictionary of AEs was co-designed and made freely available ( https://thesymptomglossary.com ). The digital tool was perceived by the LEAP and FG as a resource which could feasibly improve antidepressant treatment by facilitating the accurate, meaningful expression of preferences about potential harms through a shared decision-making process. Conclusions This dictionary was developed in English around AEs from antidepressants in depression but it can be adapted to different languages and cultural contexts, and can also become a model for other interventions and disorders (i.e., antipsychotics in schizophrenia). Co-designed digital resources may improve the patient experience by helping to deliver personalised information on potential benefits and harms in an evidence-based, preference-sensitive way.

Virtual reality (VR) is an immersive technology in which delivery of psychological therapy techniques can be automated. Techniques can be implemented similarly to real-world delivery or in ways that are not possible in the real world to enhance efficacy. The potential is for greater access for patients to effective therapy. Despite an increase in the use of VR for mental health, there are few descriptions of how to build and design automated VR therapies. We describe the development of Phoenix VR Self-Confidence Therapy, designed to increase positive self-beliefs in young patients diagnosed with psychosis in order to improve psychological well-being. A double-diamond, user-centered design process conducted over the course of 18 months was used, involving stakeholders from multiple areas: individuals with lived experience of psychosis, clinical psychologists, treatment designers, and VR software developers. Thirteen meetings were held with young patients diagnosed with psychosis to increase the understanding and improve the assessment of positive self-beliefs, help design the scenarios for implementing therapeutic techniques, and conduct user testing. The resulting Phoenix therapy is a class I United Kingdom Conformity Assessed (UKCA)–certified medical device designed to be used on the standalone Meta Quest 2 (Meta Platforms) headset. Phoenix aims to build up 3 types of positive self-beliefs that are connected to psychological well-being. In a community farm area, tasks are designed to increase a sense of mastery and achievement (“I can make a difference”); in a TV studio, users complete an activity with graded levels of difficulty to promote success in the face of a challenge (“I can do this”); and in a forest by a lake, activities are designed to encourage feelings of pleasure and enjoyment (“I can enjoy things”). Phoenix is delivered over the course of approximately 6 weekly sessions supported by a mental health provider. Patients can take the headsets home to use in between sessions. Usability testing with individuals with lived experience of psychosis, as well as patients in the National Health Service (aged 16‐26 years), demonstrated that Phoenix is engaging, easy to use, and has high levels of satisfaction.