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Abstract Research projects, initiatives and conferences that include patients as partners rather than as participants are becoming more common. Including patients as partners (what we will call ‘patient partners’) is an approach called patient engagement or involvement in research, and we will call it patient engagement throughout this paper. Patient engagement moves traditional health research conferences and events to include a broader audience for their knowledge exchange and community building efforts, beyond academics and healthcare professionals. However, there are few examples of conferences where patients are given the opportunity to fully lead. Our conference went beyond patient engagement – it was patient-led. Patient partners conceived, planned, and decided on all aspects of a virtual conference. We present the work and processes we undertook throughout 2023 to create and produce a free conference called “PxP: For patients, by patients” or PxP for short, with a tagline of “Partnering to make research stronger.” PxP was patient-led and about patient engagement in research rather than a specific disease or condition. PxP was supported by the Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis. The PxP website, known as the PxP Hub, now houses the conference recordings along with resources about patient engagement in research. These resources were recommended by the PxP Steering Committee members, speakers, and others who attended the 2023 conference. Here we lead you through how the idea for PxP was generated; how the international patient partner Steering Committee was convened and supported; how PxP was brought to life over nine months; the PxP 3-day event and feedback collected to improve future efforts; trade-offs, challenges and learnings; and resources required to support this type of event. We close with what the future holds for PxP in 2024 and beyond. It’s time to elevate patients into leadership roles for conferences and events, and we encourage you to adopt the PxP ethos by using or adapting our approach and resources to support your opportunity.

Research projects, initiatives and conferences that include patients as partners rather than as participants are becoming more common. Including patients as partners (what we will call 'patient partners') is an approach called patient engagement or involvement in research, and we will call it patient engagement throughout this paper. Patient engagement moves traditional health research conferences and events to include a broader audience for their knowledge exchange and community building efforts, beyond academics and healthcare professionals. However, there are few examples of conferences where patients are given the opportunity to fully lead. Our conference went beyond patient engagement – it was patient-led. Patient partners conceived, planned, and decided on all aspects of a virtual conference. We present the work and processes we undertook throughout 2023 to create and produce a free conference called "PxP: For patients, by patients" or PxP for short, with a tagline of "Partnering to make research stronger." PxP was patient-led and about patient engagement in research rather than a specific disease or condition. PxP was supported by the Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis. The PxP website, known as the PxP Hub, now houses the conference recordings along with resources about patient engagement in research. These resources were recommended by the PxP Steering Committee members, speakers, and others who attended the 2023 conference. Here we lead you through how the idea for PxP was generated; how the international patient partner Steering Committee was convened and supported; how PxP was brought to life over nine months; the PxP 3-day event and feedback collected to improve future efforts; trade-offs, challenges and learnings; and resources required to support this type of event. We close with what the future holds for PxP in 2024 and beyond. It's time to elevate patients into leadership roles for conferences and events, and we encourage you to adopt the PxP ethos by using or adapting our approach and resources to support your opportunity. Plain English summary: Patients are often included in health research as study participants. Involving patients as partners in research projects or conferences is becoming more common. This approach is called patient engagement or involvement. Traditional health research conferences are by and for academic researchers or healthcare professionals. These events rarely include patients as the main attendees or in the planning. While some research conferences are starting to use patient engagement, few are designed and led by patients. We share our work on a conference led and designed by patients. In 2023, our team co-created a free conference called "PxP." PxP is short for "For patients, by patients." The conference tagline was "Partnering to make research stronger." PxP was focused on patient engagement in research rather than any one health problem. PxP was supported by the Institute of Musculoskeletal Health and Arthritis. This is one of 13 Canadian Institutes of Health Research. A free online PxP Hub now hosts all of the conference recordings and many resources. We share how the idea for PxP came about, how the international patient partner Steering Committee came together and was supported to plan and bring PxP to life, the PxP conference and feedback, challenges and what we learned, and resources needed. It's time for patients to have a leadership role for conferences and events. Through sharing this example, we encourage others to adopt the PxP ethos. [ABSTRACT FROM AUTHOR]

Abstract Background Lived experience research is conducted by people who have experience of mental health issues and is therefore better placed than more traditional research to illuminate participants’ experiences. Findings that focus on identifying enablers of recovery from a lived experience perspective have the potential to assist people in their recovery process. However, this lived experience research is often difficult to find, access and interpret. We co-produced user-friendly and engaging resources to disseminate findings from six lived experience research studies. This paper seeks to answer the research questions: a) Did exposure to lived experience research increase hopefulness for participants?; and b) How else did interacting with lived experience research resources influence participants’ lives? Methods Thirty-eight participants were introduced to four resources of their choosing by peer workers over a four-week period. The helpfulness of resources was evaluated using mixed methods, including a quasi-experimental analysis of change in hope, an anonymous survey and in-depth interviews. Results Findings indicated that the resources promoted hope, but that increases in hopefulness may not be seen immediately. Other impacts include that the resources: encouraged helpful activities; provided a positive experience; increased valued knowledge; encouraged people to reflect on their journey and think constructively about mental health issues; helped people to feel less alone; and assisted people to explain their situation to others. Conclusions The research suggests the potential usefulness of lived experience research resources, presented in user-friendly formats, in the lives of people who experience mental health issues and implies a need to nurture this type of research.

Abstract Background Electroconvulsive therapy (ECT) is one of the most controversial treatments in psychiatry. This controversy and diverse and often strongly held opinions can make decision making processes around ECT more complex. Method This consumer-led project explored the experiences of individuals who had received ECT in terms of the information they received, their experience of ECT and suggestions for ways that decision making processes and experiences of ECT can be improved. Interviews were conducted by consumer researchers who had also received ECT and transcripts were analysed using constant comparative techniques. Results Seventeen individuals participated. Four overarching categories were identified from participant interviews: Information matters; Preparation and decisions before ECT; Experience of ECT; and Suggestions for improvement. Most participants suggested that more information was required and that this information should be made available more regularly to support decision making. Additional suggestions included greater involvement of family and friends (including having a family member or friend present during the ECT procedure), opportunities to gain information from individuals who had received ECT and more support for managing memory and cognitive side effects. Conclusion This study provides valuable consumer-provided insights and recommendations for psychiatrists and mental health clinicians working within ECT clinics and with consumers considering or preparing for ECT.

Highlights • Among 105 people who attempted to stop taking antipsychotic medication, less than half consulted a doctor in preparation and approximately a third used a gradual withdrawal method. • Just over half described successfully stopping and half reported no current use. • Unwanted withdrawal effects were reported by 61.9% of the group and spanned emotional, cognitive, physical, and functional domains. • Withdrawing gradually across more than one month showed significant, positive associations with self-described success and no current use. Abstract Few studies explore subjective experiences of attempting to discontinue antipsychotic medication, the withdrawal methods people use, or how their efforts affect their outcomes. People who take antipsychotics for off-label purposes are poorly represented in the literature. This study investigates experiences of attempting to discontinue antipsychotics in a cross-sectional sample and explores potential associations between withdrawal methods, relapse, and success. An anonymous online survey was completed by 105 adults who had taken antipsychotics for any reason and had attempted discontinuation at least once. A mixed methods approach was used to interpret the responses. Just over half (55.2%) described successfully stopping for varying lengths of time. Half (50.5%) reported no current use. People across diagnostic groups reported unwanted withdrawal effects, but these were not universal. Withdrawing gradually across more than one month was positively associated, and relapse was negatively associated with both self-defined successful discontinuation and no current use. Gradual withdrawal was negatively associated with relapse during withdrawal. We conclude it is possible to successfully discontinue antipsychotic medication, relapse during withdrawal presents a major obstacle to successfully stopping AMs, and people who withdraw gradually across more than one month may be more likely to stop and to avoid relapse during withdrawal. [ABSTRACT FROM AUTHOR]

Background and Aim: Medicine is traditionally considered a healing profession, yet concepts of healing are rarely applied to mental illness, recovery being the dominant discourse. This article reports one aspect of the results of a broader exploration, through a service user lens, of aspects of place that facilitate healing in mental health care, with a resulting conceptualisation of healing. Method: The research material comprised the author’s historical writings of her experience of mental illness and recovery and in-depth individual interviews with 10 mental health service users. Analysed thematically, emerging ideas were further developed through an autoethnographically informed, reflexive and iterative process. Results: Healing is necessary when there has been a disruption of integrity and wholeness, experienced as suffering. Offering opportunities for connection, integration and transformation, and acquiring wisdom along the way, healing is a journey of exploration that takes time and is hard work. Discussion: Healing is conceptualised as the intensely personal experience at the heart of recovery, reminding us of the fundamental personal processes at the heart of our journeys. As a universal human experience, healing potentially removes the sense of othering that is at the heart of mental illness stigma. [ABSTRACT FROM AUTHOR]

This current issues article is a brief critical examination of the recent Research Councils UK agenda and call for crossdisciplinary research in mental health. Our argument is based on the fact that patient and public involvement (PPI) is the only involvement and influencing strategy for service users and survivors in the agenda. Service user and survivor research as a discipline in itself remains unacknowledged. We conclude that service user and survivor research is distinct and is different to PPI, and should be recognised in any mental health research agenda. [ABSTRACT FROM AUTHOR]

Grounded in the context of the significant differences in service user involvement in social work education and research between the UK and Israel, a joint project between Anglia Ruskin University in the UK and Tel-Hai College in Israel was developed. Its aim was to develop a comparative research methodology to evaluate the outcomes of service user involvement in social work education. A main tenet of our research methodology consisted of partnering with a group of older people who used health and social care services as co-researchers from each country. This co-researching methodology together with the evaluation tools worked effectively in the two respective countries. The key findings highlight that while students in both countries valued the involvement of service users in their training, this occurred more so in Israel, where this is a very new development. Students in both countries developed rich concept maps illustrating the complexity of such an involvement. Yet, while the responses of both groups to vignettes describing user involvement scenarios reflected the positive impact of such an involvement, the UK students focused on the negative impact of potential risk more so than the Israeli students. [ABSTRACT FROM AUTHOR]

Background: Approximately 30 % of people with a diagnosis of schizophrenia receive little to no benefit from current medications. There is therefore an urgent need to develop more precisely targeted and effective treatments. Identifying biomarkers to predict response to treatment and stratify patients into groups may be a way forward. However, we know little about service users' and carers' attitudes regarding such a 'stratified medicine' approach for psychiatry—nor how this might impact on their willingness to participate in stratified medicine research. This paper presents psychiatric service user and carer views on research to develop stratified medicine for treatment resistant schizophrenia, and explores the conditions under which people would be prepared to participate in a trial and their willingness to undergo various research procedures. Methods: Participatory methods were used throughout. A consultation was undertaken with an existing Service User Advisory Group (SUAG) in order to establish a topic guide. Service user focus groups were then conducted by service user researchers in Manchester, London and Edinburgh (totalling 18 people) and one carer focus group in London, attended by eight participants. Focus groups were digitally recorded, the transcripts analysed in NVivo 10 using a simple thematic analysis, and quotations de-identified to protect participants. Results: The data reflected enthusiasm for the potential of stratified medicine and both service users and carers demonstrated a strong desire to help others. However, some service users and carers feared poor performance on neuropsychological assessments, and reported that certain medication side effects might discourage them from undergoing procedures demanding immobility and concentration. Concerns were voiced that stratified medicine could encourage an overemphasis on biological symptoms, at the expense of psychosocial factors and subjective experience. Conclusions: People with experience of treatment resistant schizophrenia would welcome stratified medicine research; however researchers should take into account how such experience might inflect service users' willingness to undergo various procedures in the context of this research. These results reinforce the value of service user perspectives in the development and evaluation of novel treatment approaches. [ABSTRACT FROM AUTHOR]

Service user research has increasingly become a significant development on the research landscape. This article seeks to critically examine this development and to identify ways in which service user research can retain its honesty and avoid the twin dangers of either becoming a tokenistic exercise or being seen as a panacea. In particular the article highlights issues concerning our conceptions of service users, recognising both the benefits and costs of service user involvement in research and begins to open up discussions on the contribution of service user research to knowledge development. The article also argues that we need to subject such research to the same standards of scrutiny and critique we would apply to other research approaches if service user research involvement in research is going to develop further. [ABSTRACT FROM PUBLISHER]

Background Interest in the involvement of members of the public in health services research is increasingly focussed on evaluation of the impact of involvement on the research process and the production of knowledge about health. Service user involvement in mental health research is well-established, yet empirical studies into the impact of involvement are lacking. Objective To investigate the potential to provide empirical evidence of the impact of service user researchers (SURs) on the research process. Design The study uses a range of secondary analyses of interview transcripts from a qualitative study of the experiences of psychiatric patients detained under the Mental Health Act (1983) to compare the way in which SURs and conventional university researchers (URs) conduct and analyse qualitative interviews. Results Analyses indicated some differences in the ways in which service user- and conventional URs conducted qualitative interviews. SURs were much more likely to code (analyse) interview transcripts in terms of interviewees’ experiences and feelings, while conventional URs coded the same transcripts largely in terms of processes and procedures related to detention. The limitations of a secondary analysis based on small numbers of researchers are identified and discussed. Conclusions The study demonstrates the potential to develop a methodologically robust approach to evaluate empirically the impact of SURs on research process and findings, and is indicative of the potential benefits of collaborative research for informing evidence-based practice in mental health services. [ABSTRACT FROM AUTHOR]

People who have used mental health services in Scotland have the lowest employment rates of all working ages, despite a national programme for mental health and well-being that provides significant investment in anti-stigma initiatives and employment support services. This paper qualitatively identifies barriers to employment from the perspectives of people who have experienced mental health issues by conducting in-depth focus groups with 20 people who have experienced mental health issues undertaken through collaborative research involving people who have experienced mental health issues alongside practitioners and academics. Researchers who have experienced mental health issues instigated and determined the direction, execution and dissemination of the study. The findings add to the growing evidence base outlining the complex and interlinked barriers to employment which include previous experience of workplace discrimination, financial uncertainty, disclosure concerns, quality of jobs available and the potential of work at times to worsen mental health conditions. Despite this, most participants expressed hopefulness and resilience. Many wanted paid work and outlined practical steps that employers can take in terms of recruitment and retention. However, participants also stressed the equal importance of voluntary work and not just as a step to paid employment. A multiple-perspectives approach provides important insights into the complex and sensitive policy area of mental health and employment. Meaningful involvement of people who have used mental health services should be a central aspect of further research that aims to understand and address these barriers. This study has shaped the development of a national service user research consortium in Scotland. [ABSTRACT FROM AUTHOR]

In recent years, the United Kingdom has witnessed a growing emphasis on service user involvement in health and social care research as well as on the governance and ethical conduct of research. Despite this, these two developments often seem to have taken place in isolation from each other, and very few commentators to date have sought to explore the relationship between involvement and research ethics. Against this background, this paper reports findings from a small exploratory study of the membership of NHS research ethics committees in a case study English region. In particular, this revealed the dominance of medical practitioners, other health service professionals and academics, with most 'lay' members seen as non-experts and often either retired or serving as hospital chaplains. Despite this, there are some encouraging signs in the wider policy environment that may mean the link between service user involvement and research ethics becomes more established in the future. [ABSTRACT FROM AUTHOR]

This paper focuses attention on the ethical issues concerning the involvement of young service users as co-researchers. In particular the article offers an examination of the limitations of the term 'service user', comments on degrees of participation and explores the ethical issues prior to the start of the research, during the research and after the research has been completed. Particular emphasis is focused on the topics of: the funders of research, ethics committees, valuing contributions, informed consent, confidentiality, authorship and ending the research. The article also suggests that this is a complex area worthy of further exploration and that many of the ethical challenges identified for working with young service users also need to be considered for young service user co-researchers. [ABSTRACT FROM AUTHOR]

Background: Enabling service users to find and keep real jobs is a significant strand of UK mental health policy. An evidence-based approach to employment support is well documented, but is not widely implemented in the UK. Aim: To inform the development of vocational services in South Essex by ascertaining service users' employment, education and training goals. Method: Face-to-face interviews with a randomly selected sample of service users on enhanced CPA carried out by a team of service user researchers using an adapted version of a questionnaire developed for a previous similar survey. A postal survey of a further randomly selected sample of service users on enhanced CPA using a brief version of the questionnaire was also carried out. Results: Interviews were carried out with 82 service users. A further 159 returned a postal questionnaire. 42.7% had no regular day time activity. Only 15% were in paid work. 60.6% were definitely interested in finding work. Seventy-seven percent of respondents to the interviews who were interested in work were not currently receiving support to achieve this. The main help wanted was support in work, help with mental health problems and benefits advice. The main barriers identified were employers' attitudes and threat to benefits. Service user researchers reported benefits from undertaking the work. Conclusions: High numbers of mental health service users are interested in pursuing employment, education or training goals but currently lack the support they need to do so. Implementation of an evidence-based approach to employment support has the potential to enable service users to achieve their goals. Service users are well able to undertake research with considerable benefits for themselves and other stakeholders. Declaration of interest: None. [ABSTRACT FROM AUTHOR]

Background: Lived experience research is conducted by people who have experience of mental health issues and is therefore better placed than more traditional research to illuminate participants' experiences. Findings that focus on identifying enablers of recovery from a lived experience perspective have the potential to assist people in their recovery process. However, this lived experience research is often difficult to find, access and interpret. We co-produced user-friendly and engaging resources to disseminate findings from six lived experience research studies. This paper seeks to answer the research questions: a) Did exposure to lived experience research increase hopefulness for participants?; and b) How else did interacting with lived experience research resources influence participants' lives? Methods: Thirty-eight participants were introduced to four resources of their choosing by peer workers over a four-week period. The helpfulness of resources was evaluated using mixed methods, including a quasi-experimental analysis of change in hope, an anonymous survey and in-depth interviews. Results: Findings indicated that the resources promoted hope, but that increases in hopefulness may not be seen immediately. Other impacts include that the resources: encouraged helpful activities; provided a positive experience; increased valued knowledge; encouraged people to reflect on their journey and think constructively about mental health issues; helped people to feel less alone; and assisted people to explain their situation to others. Conclusions: The research suggests the potential usefulness of lived experience research resources, presented in user-friendly formats, in the lives of people who experience mental health issues and implies a need to nurture this type of research. [ABSTRACT FROM AUTHOR]

Background: Electroconvulsive therapy (ECT) is one of the most controversial treatments in psychiatry. This controversy and diverse and often strongly held opinions can make decision making processes around ECT more complex. Method: This consumer-led project explored the experiences of individuals who had received ECT in terms of the information they received, their experience of ECT and suggestions for ways that decision making processes and experiences of ECT can be improved. Interviews were conducted by consumer researchers who had also received ECT and transcripts were analysed using constant comparative techniques. Results: Seventeen individuals participated. Four overarching categories were identified from participant interviews : Information matters ; Preparation and decisions before ECT ; Experience of ECT ; and Suggestions for improvement. Most participants suggested that more information was required and that this information should be made available more regularly to support decision making. Additional suggestions included greater involvement of family and friends (including having a family member or friend present during the ECT procedure), opportunities to gain information from individuals who had received ECT and more support for managing memory and cognitive side effects. Conclusion: This study provides valuable consumer-provided insights and recommendations for psychiatrists and mental health clinicians working within ECT clinics and with consumers considering or preparing for ECT. [ABSTRACT FROM AUTHOR]

Objective: Individuals undergoing long-term psychiatric treatment frequently choose to stop taking psychiatric medications. To enhance service user choice and prevent undesirable outcomes, this first U.S. survey of a large sample of longer-term users sought to increase knowledge about users' experience of medication discontinuation., Methods: A sample of 250 U.S. adults with a diagnosis of serious mental illness and a recent goal to stop up to two prescribed psychiatric medications, which they had taken for at least nine months, completed a web-based survey about experiences, strategies, and supports during discontinuation., Results: About half (54%) met their goal of completely discontinuing one or more medications; 46% reported another outcome (use was reduced, use increased, or use stayed the same). Concerns about medications' effects (for example, long-term effects and side effects) prompted the decision to discontinue for 74% of respondents. They used various strategies to cope with withdrawal symptoms, which 54% rated as severe. Self-education and contact with friends and with others who had discontinued or reduced medications were most frequently cited as helpful. Although more than half rated the initial medication decision with prescribers as largely collaborative, only 45% rated prescribers as helpful during discontinuation. Of respondents who completely discontinued, 82% were satisfied with their decision., Conclusions: Discontinuing psychiatric medication appears to be a complicated and difficult process, although most respondents reported satisfaction with their decision. Future research should guide health care systems and providers to better support patient choice and self-determination regarding the use and discontinuation of psychiatric medication.