Rethinking Relationships for Continuing Students Answers
Rethinking the relationship between biosciences, philosophy
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Rethinking the relationship between science and
society: Has there been a shift in attitudes to
Patient and Public Involvement and Public
Engagement in Science in the United Kingdom?
Annette Boaz BA MSc PhD,* Despina Biri MA MSc † and Christopher McKevitt BA (Hons) PhD ‡
*Reader, Faculty of Health, Social Care and Education, Kingston University and St George's, University of London, London,
† Research Assistant, Department of Science, Technology, Engineering and Public Policy (UCL STEaPP), University College
London, London and ‡ Professor, King's College London, London, UK
Correspondence
Annette Boaz PhD,
Reader in Health Care Research,
Faculty of Health, Social Care and
Education,
St. George's, University of London &
Kingston University, Grosvenor Wing,
Cranmer Terrace, London,
SW 17 ORE
E-mail: A.boaz@sgul.kingston.ac.uk
Accepted for publication
3 October 2014
Keywords: attitudes, biomedical
research, Mode 1 and Mode 2, Patient
and Public involvement, Public
Engagement in Science, scientists
Abstract
Background The policy imperative to engage the public and
patients in research can be seen as part of a wider shift in the
research environment. This study addresses the question: Has there
been a shift in attitudes to Patient and Public Involvement (PPI)
and Public Engagement in Science (PES) amongst researchers?
Methods Attitudes to PPI and PES within a cluster of three
NIHR supported Biomedical Research Centres were explored
through in-depth interviews with 19 researchers.
Results Participants distinguished PPI (as an activity involving
patients and carers in research projects and programmes) from
PES (as an activity that aims to communicate research findings to
the public, engage the public with broader issues of science policy
or promote a greater understanding of the role of science in soci-
ety). While participants demonstrated a range of attitudes to these
practices, they shared a resistance to sharing power and control of
the research process with the public and patients.
Conclusion While researchers were prepared to engage with the
public and patients and listed the advantages of engagement, the
study revealed few differences in their underlying attitudes towards
the role of society in science (and science in society) to those
reported in previous studies. To the participants science remains
the preserve of scientists, with patients and the public invited to
'tinker at the edges'.
Background
Traditionally, the concepts of Patient and
Public Involvement (PPI) in research and Pub-
lic Engagement in Science (PES) have occupied
parallel tracks. PES has a long history as
scientists have sought to educate the public
about science in general and their own scien-
tific research in particular; restore public trust
in their activities, and obtain and maintain a
592 ยช 2014 The Authors Health Expectations Published by John Wiley & Sons Ltd, 19 , pp. 592–601
This is an open access article under the terms of the Creative Commons Attribution License,
which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
doi: 10.1111/hex.12295
'license to practice'. 1 PPI in health research, as
formally constituted in the UK and other
mainly English speaking countries, is a newer
phenomenon seeking variously to promote par-
ticipatory democracy; increase accountability
of scientific researchers; and recognize and
draw on experiential knowledge and expertise
of lay users of health care. 2 Both might be seen
as part of a broader trend towards reconceptu-
alizing the role of society (i.e. citizens, patients
and the public) in science. Nowotny and col-
leagues 3 point to the introduction of systems of
accountability, the steering of research priori-
ties (for example through the EU Framework
programmes) and the emphasis on commercial-
ization as signs of a changing research environ-
ment and a shifting role for science and
scientists.
Some signs of a shift are evident in the aca-
demic literature. For example, Wynne 4 explic-
itly calls on scientists and scientific institutions
to democratize the production of knowledge.
Engagement as a strategy for accountability is
also characterized as a response to a supposed
crisis in trust leading to a so-called democratic
deficit in scientific research. 5 For Weldon, 6 a
more accountable science will reverse the
decline of trust in scientists and scientific
institutions. Nilsen 7 cites the WHO Alma Ata
declaration in support of claims that 'participa-
tion' in planning, organization, operation and
control of health care, encourages democracy,
accountability and transparency. Boote et al. 8
argue that as UK citizens are financial
contributors to and therefore part owners of
the NHS they have a right to have a voice in
NHS activities and processes, including
research.
Alongside this academic debate, a set of pol-
icy initiatives have encouraged greater PPI in
health research. 9 There has also been a signifi-
cant investment in PES (particularly supported
by science funders such as the UK Wellcome
Trust) and activity by scientists to respond to
public concerns about scientific issues. While
PES is a more established concept for biomedi-
cal researchers, PPI has a growing currency
particularly given its profile with funding
bodies such as the UK National Institute for
Health Research (NIHR). Furthermore, the
promotion of so-called translational research,
with its focus on investing in research that will
yield applications in clinical practice also
marks a shift towards what Gibbons describes
as 'Mode 2' research. 10 While Mode 1 is char-
acterized by the autonomy of scientists and the
dominant role of scientific discovery, Mode 2 is
described as multidisciplinary, socially distrib-
uted and orientated towards application and
use. With this shift comes a renewed emphasis
on both engagement and application. 3
There have been few studies exploring the
responses of researchers to these shifts. Those
studies that have focused on researcher
responses 11 – 14 have described researchers seek-
ing to accommodate policy requirements such
as stakeholder engagement and promoting
implementation, but experiencing a 'pull back'
to Mode 1 from their disciplines and institu-
tions. 11 Previous studies have observed the
defensive power of the research commu-
nity. 11,12 Ferlie and Wood 11 describe the sepa-
ration of research and implementation in one
clinical research team, allowing for high quality
research publications to continue to take prior-
ity. Ward et al. identified an epistemological
dissonance in which researchers continue to
privilege expertise over experience, attributing
little value to lay knowledge. 14 In the Public
Understanding of Science literature, social sci-
entists also discern changes in scientific activi-
ties and behaviour while 'the deeper tidal
rhythms of science and its governance remain
resistant'. 15 Given the recent policy shifts relat-
ing to PPI and efforts to promote greater
engagement of citizens in the production of sci-
entific knowledge, this paper investigates
whether there has been a blurring in the dis-
tinction between science and society. In partic-
ular, this study provides an opportunity to
explore the attitudes of academic researchers to
the changing research environment and the
shifting roles of science and scientists, focusing
on researchers located in UK NIHR funded
Biomedical Research Centres (BRCs). We look
in particular at their responses to initiatives
ยช 2014 The Authors Health Expectations Published by John Wiley & Sons Ltd
Health Expectations , 19 , pp. 592–601
Shifting attitudes to PPI and PES? A Boaz, D Biri and C McKevitt 593
designed to increase engagement with the pub-
lic and patients and ask: is the shift in policy
and practice around PPI and PES reflected in a
shift in attitudes amongst researchers?
Methods
Biomedical Research Centres offer an interest-
ing research setting for a study of PPI and
PES: they are designed to conduct 'bench to
bedside' translational research, speeding up the
process of bringing new treatments for patients
from the laboratory to the clinic 16 and they
include a range of types of research and
researcher. Furthermore, the NIHR funding
for these flagship initiatives is accompanied by
requirements to adhere to NIHR guidance on
PPI. As part of one BRC, two of the authors
(CM and AB) had been tasked with conducting
research on PPI practice in the BRC and had
observed that basic and some clinician scien-
tists often conflated PPI and PES. Given this
observation, this study explored researchers'
attitudes to both PPI and PES within a cluster
of three NIHR supported BRCs, through a
series of in-depth interviews.
Participants were identified from staff lists
provided by the administrative teams in the
three BRCs. Participants were selected from
one research theme within each centre with the
aim of including both different types of
researchers and staff at different levels, ranging
from relatively junior staff (research associates
and PhD students) through to professors.
Nineteen researchers were drawn from three
research themes: genetics, mental health and
health services research. The sample included
a mix of basic biomedical scientists, health
service researchers and clinician scientists
(engaged in both research and clinical practice).
Details of the sample are included in Table 1.
Semi-structured interviews were conducted,
using a topic guide covering the following
broad themes: experiences and perceptions of
PPI and PES and benefits and challenges to
PPI and PES. To assess understandings of PPI
and PES practices, the participants were also
asked to carry out a card sorting exercise, in
which they were asked to categorize a set of
cards listing PPI and PES activities most
commonly given in the literature (as deter-
mined through an extensive review of the PPI
and PES literatures) into those they considered
to be typical of PPI and those they considered
to be typical of PES. They were encouraged to
share the reasoning behind their choice during
the exercise, and were free to redesignate activi-
ties to the other category if they so wished, or
to not assign a category if they felt the activity
was not typical of either PPI or PES. In addi-
tion, a card listing commonly given reasons for
PPI and PES derived from the literature was
also used to stimulate discussion. All interviews
were conducted by DB. Interview transcripts
were entered into NVivo9. The initial coding
was generated inductively from close reading
of the transcripts and then grouped into broad
themes that were augmented in the analysis
to take account of emerging interpretations.
Gibbons' type 1 and type 2 theory was used at
this stage to further interrogate the data. 10
Analysis involved a process of constant
comparison, with particular emphasis given to
deviant cases, with the aim of developing inter-
pretation and explanation. This study was
approved by the Biomedical & Health Sciences,
Dentistry, Medicine and Natural & Mathemat-
ical Sciences Research Ethics Committee at
King's College London.
Findings
While participants had varying levels of experi-
ence of PPI and PES, they were generally clear
on the definitions of each. When completing
the card sorting exercise, they were consistent
in their categorizations of PPI and PES meth-
ods and activities. Participants made a distinc-
tion between PES and PPI in terms of the level
at which they were undertaken, their purpose
and those who were involved. Broadly speak-
ing, they considered PES to be concerned with
communications with the broader public, often
about science more generally (through, for
example giving talks in schools about the value
and contribution of science to society) and
ยช 2014 The Authors Health Expectations Published by John Wiley & Sons Ltd
Health Expectations , 19 , pp. 592–601
Shifting attitudes to PPI and PES? A Boaz, D Biri and C McKevitt 594
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