A Research Handbook for Patient and Public Involvement Researchers
Helen Brooks, Penny Bee and Anne Rogers
The term ‘qualitative research’ encompasses a wide range of different
methods. What underpins these is a shared aim of understanding the
meaning people attribute to experiences in their lives. It has been defined as
an ‘interpretive approach concerned with understanding the meanings which
people attach to actions, decisions, beliefs, values within their social world’
This handbook is written for patients and members of the public who want to
understand more about the approaches, methods and language used by
health-services researchers. Patient and public involvement (PPI) in research is
now a requirement of most major health-research programmes, and this book is
designed to equip these individuals with the knowledge and skills necessary for
meaningful participation. Edited by award-winning mental-health researchers, the
book has been produced in partnership with mental-health-service users and
carers with experience of research involvement. It includes personal reflections
from these individuals alongside detailed information on quantitative,
qualitative and health-economics research methods, and comprehensively covers
all the basics needed for large-scale health research projects: systematic
reviews; research design and analysis using both qualitative and quantitative
approaches; health economics; research ethics; impact and dissemination. This
book was developed during a five-year research programme funded by the UK’s
National Institute for Health Research (NIHR) called Enhancing the Quality of
User Involved Care Planning in Mental Health Services (EQUIP). The handbook
clearly outlines research practices, and gives an insight into how public and
patient representatives can be involved in them and shape decisions. Each
chapter ends with a reflective exercise, and there are also some suggested
sources of additional reading. People who get involved in health research as
experts from experience now have a textbook to support their research
Learning from communities in informal settlements in Durban, South
Maria Christina Georgiadou and Claudia Loggia
explores the concept of ‘self-building’ in the context of community-led upgrading in South Africa. Participatory action researchmethods have been applied to ‘co-produce’ knowledge with residents and community researchers in three case studies in the Durban metropolitan area: Namibia Stop 8 (Phase 1), Piesang River and Havelock. The research seeks to identify critical success factors in managing self-build upgrading projects, discussing the crucial roles of stakeholder management, procurement and project governance. It also explores community-led approaches in informal
This book was developed during a five-year
research programme funded by the UK’s
National Institute for Health Research (NIHR).
This study aimed to improve service user
and carer involvement in care planning in
mental health services. The study was called
Enhancing the Quality of User Involved Care
Planning in Mental Health Services (EQUIP).
Its aim is to help other public and patient
representatives increase their understanding
and skills in researchmethods.
The EQUIP programme used a range of
different researchmethods to achieve its
goals, and you will read
In July 2013, the UK government arranged for a van to drive through parts of
London carrying the message ‘In the UK illegally? GO HOME or face arrest.’ The
vans were short-lived, but they were part of an ongoing trend in
government-sponsored communication designed to demonstrate control and toughness
around immigration. This book explores the effects of such performances of
toughness: on policy, on public debate, on pro-migrant and anti-racist activism,
and on the everyday lives of people in Britain. This book both presents research
findings, and provides insights into the practice of conducting research on such
a charged and sensitive topic. Blending original research, theoretical
analysis, and methodological reflections, the book addresses questions such
Who gets to decide who ‘belongs’?
How do anti-migrant
sentiments relate to changing forms of racism?
Are new divisions, and
new solidarities, emerging in the light of current immigration
Written in a clear and engaging style, the book sets an
agenda for a model of collaborative research between researchers, activists, and
people on the ground.
This book examines the relationship between environmental justice and citizen
science, focusing on enduring issues and new challenges in a post-truth
age. Debates over science, facts, and values have always been pivotal within
environmental justice struggles. For decades, environmental justice activists
have campaigned against the misuses of science, while at the same time engaging
in community-led citizen science. However, post-truth politics
has threatened science itself. This book makes the case for the importance of
science, knowledge, and data that are produced by and for ordinary people living
with environmental risks and hazards. The international, interdisciplinary
contributions range from grassroots environmental justice struggles in American
hog country and contaminated indigenous communities, to local environmental
controversies in Spain and China, to questions about “knowledge justice,”
citizenship, participation, and data in citizen science surrounding
toxicity. The book features inspiring studies of community-based participatory
environmental health and justice research; different ways of sensing,
witnessing, and interpreting environmental injustice; political strategies for
seeking environmental justice; and ways of expanding the concepts and forms of
engagement of citizen science around the world. While the book will be of
critical interest to specialists in social and environmental sciences, it will
also be accessible to graduate and postgraduate audiences. More broadly, the
book will appeal to members of the public interested in social justice issues,
as well as community members who are thinking about participating in citizen
science and activism. Toxic Truths includes distinguished contributing authors
in the field of environmental justice, alongside cutting-edge research from
emerging scholars and community activists.
Bordering intimacy is a study of how borders and dominant forms of intimacy, such as family, are central to the governance of postcolonial states such as Britain. The book explores the connected history between contemporary border regimes and the policing of family with the role of borders under European and British empires. Building upon postcolonial, decolonial and black feminist theory, the investigation centres on how colonial bordering is remade in contemporary Britain through appeals to protect, sustain and make family life. Not only was family central to the making of colonial racism but claims to family continue to remake, shore up but also hide the organisation of racialised violence in liberal states. Drawing on historical investigations, the book investigates the continuity of colonial rule in numerous areas of contemporary government – family visa regimes, the policing of sham marriages, counterterror strategies, deprivation of citizenship, policing tactics, integration policy. In doing this, the book re-theorises how we think of the connection between liberal government, race, family, borders and empire. In using Britain as a case, this opens up further insights into the international/global circulations of liberal empire and its relationship to violence.
advertised as widely as possible to ensure that they are
accessible to a broad range of people from different backgrounds. Adequate
training should be provided to ensure that people can be involved in research
in a meaningful way (e.g. researchmethods and how clinical services are
organised and commissioned).
BEE (RESEARCH) PRINT.indd 10
A Research Handbook for Patient and Public Involvement Researchers
Figure 1 Levels of service
Since the mid-1990s, increasing emphasis
has been placed on the importance of PPI.
engage in health services research and work meaningfully with academic and
clinical research teams in true partnership. It has been co-written with service
users and carers from the NIHR EQUIP research programme and aims to help
other public and patient representatives increase their understanding and
skills in researchmethods.
Health research is incredibly important. It helps to develop and evaluate new
treatments, improve patient safety, and identify the most effective ways to
organize, manage, finance, and deliver high quality care. As a
, ‘community-based participatory research’, and ‘community-university partnerships’.
Putting differences aside, all of these forms of research seek to break the traditional research mould, where participants are merely research subjects. These
community-oriented researchmethods also subscribe to and participate in change
in practices and social change.
Throughout this chapter, for the terms ARUC-ÉS and RQRP-ÉS partnership
research will be used.
Research initiated by practitioners
In partnership research, research questions come from the field. Practitioners
are at the heart