Patient and Public Involvement (PPI) and Responsible Research and Innovation (RRI) approaches in mental health projects involving young people: a scoping review protocol.

BACKGROUND: Rather than being perceived as merely 'part of the problem', the perspectives and experiences of young people play a pivotal role in devising effective solutions for mental health challenges. Two distinct methodologies that aid in this endeavour are 'patient and public involvement' (PPI) and 'responsible research and innovation' (RRI). However, there is a tendency to conflate PPI and RRI practices, leading to ambiguity in their application. Moreover, the extent and nature of young people's involvement in mental health-related projects (namely: research, intervention, product development) employing these methodologies, and the subsequent implications thereof, remain unclear. Consequently, the proposed scoping review aims to identify and analyse literature pertaining to PPI and RRI approaches in mental health projects that engage young people in collaboration. METHODS: The selected databases will be MEDLINE, PsycINFO, PsycArticles, Scopus, Web of Science, IBBS, CINAHL (EBSCO) and ASSIA. Comprehensive searches will span from the inception of each database. A pilot test will be conducted to assess the screening criteria and data extraction form, with two authors independently reviewing titles and abstracts. Full-text articles meeting the inclusion criteria will undergo narrative syntheses, with results presented in tabular format. Feedback on the findings from a youth perspective will be sought from young people within our broader research network, namely Sprouting Minds. The review will adhere to the guidelines outlined by the Joanna Briggs Institute (JBI) and follow the PRISMA-ScR procedures. Inclusion criteria will comprise English-language, primary research peer-reviewed articles focused on Patient and Public Involvement (PPI) or Responsible Research and Innovation (RRI), examining mental health-related research processes, interventions, and products developed in collaboration with young people. Studies employing quantitative, qualitative, and mixed-methods approaches will be considered, while non-journal publications will be excluded. DISCUSSION: The intended scoping review aims to map the literature concerning mental health-related projects that engage with young people through PPI or RRI approaches. The outcomes hold promise for enriching the participatory research domain, particularly in studies centred on young people and their mental well-being. Furthermore, by delineating potential overlaps and distinctions between PPI and RRI, the findings stand to aid mental health researchers and practitioners in making informed decisions about the most suitable approach for their projects when partnering with young individuals. SYSTEMATIC REVIEW REGISTRATION: Open Science Framework (registration: DOI https://doi.org/10.17605/OSF.IO/N4EDB ).

This study aims to understand how young people are involved in mental health projects (namely: research, intervention, and product development) and how their perspectives shape the outcomes. Two approaches, Patient and Public Involvement (PPI) and Responsible Research and Innovation (RRI), are often used in these projects, but it's not clear how they differ or how young people are involved. To explore this, the researchers will review existing literature on mental health projects involving young people. They will search databases for articles that describe or evaluate these projects, focusing on how young people are involved in the research and/or development processes. They will include studies in English that have been peer-reviewed and cover both numerical and text-based research. Young people will be involved to provide feedback from their perspective. This review will follow established guidelines to ensure trustworthiness and transparency. The findings from this review will help researchers and professionals understand the best ways to involve young people in mental health projects. By clarifying the differences between PPI and RRI and highlighting effective strategies, this study aims to improve future research and ultimately benefit young people's mental health.

Insights on conducting digital patient and public involvement in dementia research during the COVID-19 pandemic: supporting the development of an "E-nabling digital co-production" framework.

BACKGROUND: The rapid transition to digital working, accelerated due to the response to the COVID-19 pandemic, has impacted the involvement of patients and public in research. This paper presents experiences of engaging in digital Patient and Public Involvement (e-PPI) in dementia research since the lockdowns, offering recommendations regarding future digital and hybrid working. Furthermore, it introduces a co-produced framework for researchers, PPI coordinators and public contributors to identify and discuss challenges and opportunities provided by e-PPI. METHODS: Two online workshops and one individual interview were performed with a group of researchers and PPI coordinators with experience in PPI in dementia research, and with an existing dementia PPI group having some experience of working online during the pandemic. The project was constructed as a PPI activity, with the MindTech Involvement Team (PPI group) involved in the entire process, and a collaborative data analysis process was adopted. RESULTS: After refinement of the coding structure, the MindTech Involvement Team and Project Leaders identified four main themes, resulting in the 'E-nabling Digital Co-production' Framework. During this framework development, different positions were expressed, associated with the transition to digital working. Two main themes were shared by the participating groups regarding e-PPI: wider potential reach without geographical constraints, and the perception of more business-like sessions with reduced opportunities for social interactions and communication. Specifically for dementia research, whilst e-PPI may allow public contributors to attend more meetings, potentially mutually supportive environments provided by face-to-face meetings could be diminished, with carers experiencing a possible reduction in informal respite opportunities. CONCLUSIONS: Through involving public contributors, researchers, and PPI coordinators with a focus on digital PPI in dementia research, we were able to further refine and co-produce the 'E-nabling Digital Co-production' Framework. Demonstrating potential for analysis of benefits and limitations within e-PPI, it was possible to identify both general insights and those specific to dementia research. However, the most significant contribution of the framework is the potential to support local journeys of co-production in ongoing digital and hybrid public involvement activities.

The COVID-19 pandemic has impacted the engagement of patients and the public in research. Lockdowns, social distancing, and reduced physical contact have affected the involvement of public contributors in research studies. In particular, the pandemic triggered a rapid transition to digital working, increasing the use of Information and Communication Technologies such as video conferencing on computers and mobile devices. With little time to reflect on the consequences of digital working in PPI and with a continuing legacy of hybrid or blended approaches to involvement, this project highlights the challenges and potential for e-PPI approaches (electronic/digital PPI) within the context of dementia research. In addition to examining the transition to digital working in this area, we present a co-produced framework for researchers, PPI coordinators and public contributors.

Living with cryptoglandular anal fistula: a qualitative investigation of the patient's experience through semi-structured patient interviews.

PURPOSE: Cryptoglandular anal fistula continues to be a subject of extensive surgical research due to the lack of effective and enduring treatments, some of which incur risks to continence and quality of life. However, the patient experience of disease has seldom been reported. The aims of this study are to understand the impact of living with a fistula and the treatment outcomes that are valued by patients. METHODS: Patients with cryptoglandular anal fistula were recruited using purposive sampling from two tertiary referral centres in the UK and the Netherlands. Patients underwent semi-structured interviews that were audio-recorded and transcribed verbatim. Dutch transcripts were translated into English and underwent independent, thematic analysis using open coding by two study team members to identify common themes and sub-themes. RESULTS: Twenty interviews were conducted before saturation was reached (11 male, median age 49, Interquartile range 39-55 years). Four broad themes emerged, covering the physical symptoms of fistula, the patient journey towards understanding the condition, life impact, and treatment. Several inter-related sub-themes were found, reflecting the extensive impact and adjustment that the disease entails. CONCLUSION: The impact of cryptoglandular anal fistula extends beyond the physical symptoms of pain and discharge, requires significant readjustment, and often negatively impacts psycho-social wellbeing. These aspects of disease should receive greater attention in future assessment of treatment and quality of life.

Effects of methylphenidate on sensitivity to reinforcement delay and to reinforcement amount in pigeons: Implications for impulsive choice.

Methylphenidate has been shown to decrease impulsive choice (increase choices of a larger more delayed reinforcer). The purpose of this study was to investigate 2 potential behavioral mechanisms of this effect: a drug-induced change in control by reinforcement delay (Experiment 1) and/or by reinforcement amount (Experiment 2). In Experiment 1, pigeons responded under a rapid-acquisition, concurrent-chains choice procedure involving delay to reinforcement; the option with the shorter delay varied unpredictably across sessions. The pigeons accurately tracked the shorter delay across sessions (i.e., a preference for the option with the shorter delay developed within each session). Methylphenidate selectively decreased sensitivity to reinforcement delay-it attenuated the acquisition of preference at doses that did not systematically affect bias or response rates. In Experiment 2, pigeons responded under a rapid-acquisition, concurrent-chains choice procedure involving reinforcement amount. The pigeons accurately tracked the option with the larger reinforcement amount across sessions. Methylphenidate selectively decreased sensitivity to reinforcement amount-it attenuated the acquisition of preference at doses that did not systematically affect bias or response rates. These data suggest that methylphenidate attenuates the degree to which the various reinforcement dimensions control choice, and that drug effects on impulsive choice depend upon the relative contributions of drug-induced changes in control of behavior by each relevant dimension. (PsycINFO Database Record