BACKGROUND: Patient participation in undergraduate education has been proven to contribute to student skills development complementing their didactic training. An increasing number of educational programs have implemented systematic patient engagement in curriculum to comply with the requirements of professional and regulatory bodies and to ensure greater focus on patient care. This scoping review aims to identify and summarize literature on the integration of patients and associated benefits in undergraduate allied health education programs.
METHODS: This scoping review was conducted using a comprehensive literature search of the electronic databases MEDLINE, EMBASE and CINAHL. The study was carried out and reported using the Preferred Reporting Items for Systematic Reviews and MetaAnalyses (PRISMA) guidance for Systematic reviews and Meta Analyses. Inclusion criteria included English language and allied health education. Exclusion criteria were outside the date range of 2011 to 2023, non-allied health programs, and clinical exposure during didactic courses. Literature reviews and commentaries were also excluded.
RESULTS: A total of nineteen studies were included in the scoping review. The majority of these papers examined undergraduate programs that engaged patients in curriculum delivery while a few involved patients in feedback delivery and formal assessment. Other forms of patient involvement were through curriculum co-design. Across institutions, evidence suggested the benefits of patient involvement to students, patients, and educational programs for improved delivery of person-centred care.
CONCLUSIONS: Patient involvement in curriculum delivery and student assessment provided valuable teaching and learning experiences for students and patients. Patient engagement also ensured that person-centered care principles were integrated into education programs. Summary of findings are provided to better prepare patients and facilitators for their role and to enhance the benefits to all participants.

BACKGROUND: Little is known about actual involvement or how to achieve service user and caregiver in mental health systems strengthening in low-and middle-income countries. This study describes the processes and explores involvement experiences of participants in a pilot study of a new model of service user involvement in mental health system strengthening in a rural district in southern Ethiopia.
METHODS: We applied a case study design using participatory action research (PAR). The PAR process comprised of three stages, each with iterative activities of plan, act, observe and reflect. Two stakeholder groups, a Research Advisory Group (RAG) and Research Participant Group (RPG), were established and collaborated in the PAR process. Data collection involved process documentation of meetings and activities: attendances, workshop minutes, discussion outputs, reflective notes, participatory observation of sessions, and in-depth interviews with 12 RPG members. We analyzed the process data descriptively. Thematic analysis was used for qualitative data. Triangulation and synthesis of findings was carried out to develop the case study.
RESULTS: The stakeholder groups identified their top research priorities, developed an intervention and action plan and made a public presentation of preliminary findings. Key mechanisms used for inclusive participation included capacity building and bringing together diverse stakeholders, anchoring the study in established strong community involvement structures, and making use of participatory strategies and activities during the PAR process. Four themes were developed about experiences of involvement in PAR: (i) expectations and motivation, (ii) experiences of the dynamics of the PAR process, (iii) perceived impacts of involvement in the PAR process, and (iv) implementation challenges and future directions.
CONCLUSIONS: This case study demonstrated the feasibility and acceptability of implementing a complex model of service-user involvement in mental health system strengthening in a resource constrained setting. More needs to be done to embed service-user involvement into routines of the primary healthcare system, alongside sustained support and strengthening multi-stakeholder collaboration at multiple levels.

There is growing evidence for the benefits of therapeutic groups for children and young people living with chronic health conditions. As a paediatric health service, we regularly run 12 different groups, most of which are informed by a Narrative Therapy approach, with new groups routinely created to respond to the changing needs of children and young people. In this paper, we describe how we have stayed connected to our vision and values in developing and delivering group interventions, sharing our process which integrates different methods of participation and involvement to ensure young people\'s voices are centred. We use three of our recently introduced groups to illustrate these ideas.

To better understand how persons diagnosed with avoidant personality disorder (AVPD) make sense of the origin and development of their current everyday struggles.
Persons with AVPD (N = 15) were interviewed twice using semi-structured qualitative interviews, which were analyzed through interpretative-phenomenological analysis. Persons with the first-hand experience of AVPD were included in the research.
The superordinate theme, \"a story of becoming forlorn,\" encompassed three main themes: \"it goes all the way back to when I was little,\" \"there was a distance between others and me,\" and \"transitions made it worse.\"
Though the results are not necessarily specific to AVPD, the findings clarify how people with AVPD can make sense of their current struggles by constructing developmental life stories in the interplay between themselves as persons and the growing demands of their social world. Furthermore, childhood relational vulnerabilities may challenge the ongoing development of social cognition and skills.

Despite a growing interest in service-user involvement in mental health services, the interaction between health institutions and local groups is only beginning to receive attention, particularly in global south settings.
Looking at a participatory initiative in Chile, this study explores how, under unfavourable administrative conditions, health organizations approach and work with communities.
We interviewed policy-makers (5), local professionals (10), service users and community representatives (6) linked to a concrete participatory initiative. Participant observation in relevant meetings helped to enrich the interpretations. Thematic analysis was applied to interview transcripts and field notes.
The findings present a sequence of actions starting with the creation of a network of community-based groups. A set of problems ensued, related to the group\'s diversity, internal representation, decision-making and funding processes. In response, processionals implemented simultaneously bureaucratic and democratic adjustments, developing a vision of community that ignored the particularities-including the motivations-of local groups.
Based on these findings, we argue that participatory initiatives should be studied as on-going achievements shaped by broad policy orientations and local configurations of interest. In the process, they produce ad hoc forms of knowledge and visions of community that provide orientation to the agents involved.

Idiopathic intracranial hypertension (IIH) is under-researched and the aim was to determine the top 10 research priorities for this disease.
A modified nominal group technique was used to engage participants who had experience of IIH.
This James Lind Alliance Priority Setting Partnership was commissioned by IIH UK, a charity.
People with IIH, carers, family and friends, and healthcare professionals participated in two rounds of surveys to identify unique research questions unanswered by current evidence. The most popular 26 uncertainties were presented to stakeholders who then agreed the top 10 topics.
The top 10 research priorities for IIH included aetiology of IIH, the pathological mechanisms of headache in IIH, new treatments in IIH, the difference between acute and gradual visual loss, the best ways to monitor visual function, biomarkers of the disease, hormonal causes of IIH, drug therapies for the treatment of headache, weight loss and its role in IIH and finally, the best intervention to treat IIH and when should surgery be performed.
This priority setting encouraged people with direct experience of IIH to collectively identify critical gaps in the existing evidence. The overarching research aspiration was to understand the aetiology and management of IIH.

To better understand the subjective lived experience of persons diagnosed with avoidant personality disorder (AVPD).
Persons with an AVPD (N = 15) were interviewed twice with semistructured qualitative interviews and analyzed through interpretative-phenomenological analysis. Persons with first-hand experience of AVPD were included in the research process.
The superordinate theme, \"struggling to be a person,\" encompassed two main themes. The first, \"fear and longing,\" incorporated the subthemes \"longing for connection,\" \"dreading to get close\" and \"being alone, for better or for worse.\" The second main theme, \"a doubting self,\" included the subthemes \"feeling insecure\" and \"searching for a sense of self.\"
The findings shed light on how the reflexive selves of people with AVPD might struggle with sense-making, sense of agency, and identity. This study underscores how impaired tacit knowledge of social behavior can hamper the process of being a person in relation to others.

UNASSIGNED: Healthcare workers want to listen more to patients and their carers in all sorts of areas of healthcare. This can include choosing topics for medical research. We looked at how patients and carers have helped to choose topics for research about type I diabetes. We aimed to find out if, and why, researchers often rejected their choices. We looked at a project which brought together patients, carers and healthcare workers to choose topics for research about type 1 diabetes. The group first asked patients, carers and healthcare workers to suggest ideas for research questions. But the group had to follow rules about what counted as a good research question. Some people\'s ideas did not count as good research questions, and they were rejected at the start. We looked at who were most likely to have their ideas rejected at the start. We found that patients and carers were most likely to have a suggestion rejected. Then we looked at the rejected questions in detail. They were mostly about curing diabetes, preventing diabetes and understanding how diabetes works. There were also some questions about access to medicines and the quality of care. Researchers should ask patients and carers for help deciding what counts as a good research question from the start of projects like these. We should also think about what might be getting in the way of patients and carers making more of a difference in research.
UNASSIGNED: Background Patients and carers are increasingly involved in deciding on topics for medical research. However, so far, it has been difficult to gain an accurate picture of the impact of such involvement because of poor reporting and evaluation in published studies to date. This study aimed to explore how a partnership of patients, carers, healthcare professionals and organisations identified questions for future research and why patients and carers had a limited impact on this process. Methods In the first stage of the partnership process, relevant service users and providers (including patients, carers, healthcare professionals and voluntary organisations) were invited to submit suggested research questions about the treatment of type 1 diabetes, via a national online and paper survey. The partnership followed formal protocols that defined a researchable question. This meant that many respondents\' suggested research questions were rejected at the start of the process. We analysed survey submissions to find out which groups of respondents were most likely to have their suggestions rejected and what these suggestions were about. Results Five hundred eighty-three respondents submitted 1143 suggested research questions, of which 249 (21.8 %) were rejected at the first stage. Respondents with lived experience of this long-term condition (patients and carers) were more likely than those without lived experience to submit a research question that would be rejected (35.6 vs. 16.5 %; p < 0.0005). Among the rejected questions submitted by patients and carers, there were several key themes: questions about cure, cause and prevention, understanding the disease, healthcare policy and economics. Conclusions In this case study, early decisions about what constituted a researchable question restricted patients\' and carers\' contributions to priority setting. When discussions about a project\'s remit take place before service users are involved, researchers risk distorting the potential impact of involvement. Impact assessments should consider not only the differences patients and carers make to research but also the differences they could have made in the absence of systemic barriers. We recommend that initiatives aimed at involving patients and carers in identifying research questions involve them as early as possible, including in decisions about how and why suggested research questions are selected or rejected.

BACKGROUND: Experience-based co-design (EBCD) is a methodology for service improvement and development, which puts service-user voices at the heart of improving health services.
OBJECTIVE: The aim of this paper was to implement the EBCD methodology in a mental health setting, and to investigate the challenges which arise during this process.
METHODS: In order to achieve this, a modified version of the EBCD methodology was undertaken, which involved listening to the experiences of the people who work in and use the mental health setting and sharing these experiences with the people who could effect change within the service, through collaborative work between service-users, staff and managers.
RESULTS: EBCD was implemented within the mental health setting and was well received by service-users, staff and stakeholders. A number of modifications were necessary in this setting, for example high levels of support available to participants.
CONCLUSIONS: It was concluded that EBCD is a suitable methodology for service improvement in mental health settings.

The international Hearing Voices Movement (HVM) is a prominent mental health service-user/survivor movement that promotes the needs and perspectives of experts by experience in the phenomenon of hearing voices (auditory verbal hallucinations). The main tenet of the HVM is the notion that hearing voices is a meaningful human experience, and in this article, we discuss the historical growth and influence of the HVM before considering the implications of its values for research and practice in relation to voice-hearing. Among other recommendations, we suggest that the involvement of voice-hearers in research and a greater use of narrative and qualitative approaches are essential. Challenges for implementing user-led research are identified, and avenues for future developments are discussed.