Public Patient Involvement in Mental Health Research PDF

**[Core Principles of Mental Health Research ]** **[Public Patient Involvement ]** [what's the point of involving people with relevant lived experience in research?] - Ethics and social justice - Relevance - Challenge to assumptions - More successful research - Greater impact and mo...

**[Core Principles of Mental Health Research ]** **[Public Patient Involvement ]** [what's the point of involving people with relevant lived experience in research?] - Ethics and social justice - Relevance - Challenge to assumptions - More successful research - Greater impact and more effective dissemination - Building capacity [PPI:] - Sometimes used as a broad umbrella term for all forms of involvements - Essential part of applying for research funding Basic Form: - Consultation with relevant stakeholders about research questions and design, not necessarily much involvement in conducting research Participants: - Usually seek a representative group - Often service users the relevant group [Service user involvement in conducting research:] - Increasingly service users are involved in conducting and reporting on research: e.g., designing data collection instruments, carrying out interviews, analysing data, writing reports - Terminology: peer researchers, service user researchers, survivor researchers, lived experience researchers - Service user researchers often recruited for relevant skills and experience as well as for personal experience - Training and support are key - Blurred boundaries: relevant lived experience may be one of criteria in recruiting research staff; many researchers have relevant personal experience even if not the reason they were recruited [Co-Production:] - Collaborative model in which stakeholders work together throughout research process -- often researchers, clinicians, service users working together - Rooted in a radical approach to sharing power, responsibility for decision making equally - But somewhat susceptible to being water down in current university-based research [Service user and survivor-led research:] - Power imbalances may only be overturned, service users and survivors set the agenda if they lead research - Still few large-scale studies that are led by service user/survivor researchers, involve only people with such backgrounds - Increasingly advocated, and influential survivor academics with capacity to lead [Other key related terms:] - Participatory research: designs in which researcher hands over power to research ppts -- often community members - Co-Design: co production principles applied to designing interventions and services - Public Engagement: range of activities to consult and involve the public and disseminate findings to them - Research Impact: beyond academia, including society and economy [Pitfalls:] - Tokenism, lack of authentic involvement, rubber stamping rather than engagement - Lack of support, training and mentorship: not easy to draw on distressing personal experiences for your work - Lack of appropriate reimbursement - Tension between collaborating with the "system" and more radical challenge [Some Key Messages:] - Involvement of people with lived experience that is relevant in various ways should be seen as essential, from formulation of research question to dissemination of findings - Boundaries between researchers with/without lived experience are blurred and multiple roles common, though power dynamics here are complex - Always remember that the experiences people draw on to inform research are very often distressing -- consider support, debriefing, reflective spaces, preparing people for what will be discussed - Role of LE researchers is to contribute on the basis of the experimental knowledge they have gained - Keep thinking how the particular people involved may relate to wider groups of people to whom the researcher relates - Consider diversity throughout -- are the main groups of people to whom the research is relevant represented, especially people who are often excluded/discriminated - Against/have worse experiences of mental health care - People already involved in research and In SU organisation are a good source -- but important to recruit people new to research process too - Expect involvement to be enriching, improve research quality, be interesting, stimulating, enjoyable - Probably not being done right if it does not result in challenges/rethinking of plans