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
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 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
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
trials.2 The demotion of the medical case study to a method used mainly
in clinical practice is a direct result of the scientific turn in these fields,
which prioritises large sample sizes and serialisation. Evidence-based
researchmethods have replaced the more discursive, even searching style
of case histories or case studies. Still, in medical practice, for complex
cases, recent years have seen a renewed interest in organising specialist
meetings of the various medical experts involved in patient treatment.
Such gatherings of experts return the patient to the
Iain Lindsey, Tess Kay, Ruth Jeanes and Davies Banda
the book is, therefore, to reflect on our methodological commitment
to understanding and contextualizing local SfD. Ongoing consideration is given
throughout the book to the researchmethods that have underpinned the findings
that are presented. Overall, we seek to differentiate our approach to focusing
on ‘the local’ from other prominent strands of SfD research and, in
so doing, explore implications for future work and understanding in this
past. Reviewing was one of the skills that I
had learnt on my researchmethods course. ‘wish list’ for a good involvement measure.
Our literature review had found a number
Taking part in a systematic review can be
of ways of measuring service users’
daunting, but there are many ways that PPI
involvement in care decisions, but none of
representatives can contribute. With the
them were acceptable to people with lived
right training, knowledge and education
experience. PPI involvement had shown us
work we can work as equals and even lead
that we needed to develop a new