Involving People with Lived Experience in Research

Study Notes

Involving People with Lived Experience

Ethical and social justice principles underpin the need for "nothing about us without us"
Involvement ensures relevant questions and approaches are used
Challenging assumptions improves research quality
Increased success in research, stemming from better recruitment
Enhanced research impact, leading to more effective dissemination, impacting society and economy
Capacity building is a key outcome

Patient and Public Involvement (PPI)

Diverse forms of involvement, including consultation, are crucial
PPI is frequently a pivotal factor in securing research funding
PPI encompasses varied participants: service users, staff, relatives, broader public.

Service User Involvement

Service users play a growing role in research, from data collection instruments and interviews to analysis and reporting
Various titles for researchers with lived experience include: peer researchers, service user researchers, survivor researchers, and lived experience researchers
Recruitment considers both relevant skills and lived experience
Adequate training and support are vital
Blurred lines exist: lived experiences may act as criteria for staff recruitment, similarly to the lived experiences of researchers.

Co-production

Stakeholders collaborate throughout the research process
Power sharing and shared responsibility for decision-making are key aspects
Participatory research involves shifting control from researchers to research participants
Co-design utilizes co-production principles in creating services and interventions
Public engagement entails specialists interacting with non-specialists, creating a deeper understanding of the latter

Public Engagement

Aims to involve a range of activities designed to include the public in research
Emphasis on research impact beyond academia, impacting society and economy

Pitfalls

Tokenistic involvement is detrimental
Inauthentic participation has minimal impact
Insufficient support, training, mentoring, and financial recompense undermines efforts
Potential tension between cooperation with existing systems and challenging them
Rubber stamping should be avoided

Description

This quiz explores the principles and importance of involving individuals with lived experience in research, emphasizing ethical considerations and the impact on research quality. It covers patient and public involvement (PPI) strategies and highlights diverse participant roles including service users and researchers with lived experience.