Comparing traditional forms of
patient and public involvement
in health and social care
research with online forms of
involvement and engagement
Sophie Staniszewska
RCN Research Institute
School of Health and Social Studies
Executive Summary
This report compares traditional forms of patient and public involvement (PPI)
with online forms of engagement and provides an initial descriptive analysis of
online postings discussing Andrew Oswald’s research.
Key themes include:
The missing architecture of involvement in online forms: While traditional
forms of involvement depend on certain context and process factors for their
success, such as agreed ways of interacting, many of these are missing from
online forms of involvement, suggesting their usefulness in enhancing future
forms of online interaction would need to be considered.
A consultative form of involvement: The level of involvement seems to be
mostly at a consultative level, in that comments are offered, but no response
is made and there is no assurance of how the comments will be used by the
researcher. There is potential for this to become more deliberative and
interactive, and to develop a more collaborative level of involvement that
adopts a partnership approach, for example in interpreting findings or
discussing the implications of research.
Developing lines of argument or threads: The development of a clear line
of argument does occur but often interactions seem more idiosyncratic. There
is potential for more directed inputs to help develop threads in a more useful
way that could help inform different aspects of research.
A sense of community: While many forms of involvement depend on the
development of communities or publics, online interactions did not appear to
rely on such structures, although this was often difficult to judge. There is
potential to develop such communities and to enhance contribution through
the identification and operationalization of key elements of what constitutes a
good community.
A public knowledge space: As a public knowledge space the online settings
offers much potential as a place where different forms of evidence, knowledge
and experience come together. While the Oswald commentary is relatively
one-sided and there is limited interaction between different forms of
knowledge, there is potential to generate a more interactive ‘knowledge
space.’
2.0 Introduction
Patient and public involvement in health and social care research and in
health and social care provision has expanded over the last decade. Interest
and activity have grown, with projects in the European Union, Australia,
Canada, and other countries focusing on different aspects of PPI
(Staniszewska et al 2011). In the United Kingdom, the Director General of NHS
Research and Chief Medical Officer has stated that involvement should be the
norm, not the exception, in health research (Staley 2009), although progress is
still needed to implement this vision.
“No matter how complicated the research, or how brilliant the researcher, patients and
the public always offer unique, invaluable insights. …. It makes studies more effective,
more credible and often more cost efficient as well. ..It is fundamental to ensure high
quality research that brings real benefits for patients, the public and the NHS.”
Professor Dame Sally C. Davies, CMO, Director General of Research and Development,
Department of Health
The overall aims of involvement in health research are to enhance the quality,
relevance, and appropriateness of research and also to contribute to the
broader democratization of research, through participatory forms of involvement
that encourage partnership in research (Staniszewska et al 2012).
Researchers can approach involvement differently, with some viewing
involvement as a democratic right, while others may see it in a more utilitarian
way as improving the scientific quality of research. INVOLVE (2012) highlight
three main levels of involvement, user-led, collaborative and consultative. In
user-led research the patient or user leads a study, sometimes involving
researchers. In consultative forms of involvement, the researcher will discuss a
study with patients but may not necessarily feedback or involve them further. In
collaborative involvement, there is more of a partnership, with patients often
involved as collaborators, influencing the content of research questions and
involved in key stages of a study, including publication. In reality INVOLVE
(2012) acknowledge that these different levels of involvement can occur within
one study.
1.1 Definitions and terms
While patient and public involvement has expanded as an activity, its
underpinning conceptual clarity has not progressed at the same rate. Public
involvement has been defined in a range of ways. One commonly used
definition is provided by INVOLVE who describe public involvement in
research as “research being carried out ‘with’ or ‘by’ members of the public
rather than ‘to,’ ‘about’ or ‘for’ them (INVOLVE 2012). When INVOLVE use the
term public they include patients, potential patients, carers and people who
use health services as well as people from organisations that represent
people who use services. Examples of such active involvement include
members of the public as joint grant holders, members of advisory boards,
commenting on, or developing patient information leaflets or carrying out
research. Public engagement is a term that is sometimes used
interchangeably with involvement, but can have a different meaning.
Engagement, as defined by INVOLVE (2012), is the provision and
dissemination of information and knowledge about research. Examples can
include science festivals, raising awareness of research through different
media and dissemination of findings to participants at the end of a study.
Participation can also be defined in different ways, but within health research
is often defined as people taking part in a study, for example being recruited
to a clinical trial or other forms of research or completing a questionnaire as
part of the research study (INVOLVE 2012).
The variability in terminology and definitions has been emphasised by recent
systematic reviews of the conceptualisation, definition, measurement, impact
and outcomes of public involvement within health services research (Brett et
al 2012) and health and social care services (Mockford et al 2011).
1.2 Conceptual and theoretical development
The PIRICOM study (Brett et al 2009) found that compared to the many
studies that report PPI activity, there were relatively few papers that focus on
the conceptualisation or theorisation of PPI, with many relying on personal
reflections. Conceptualisation refers to the way in which a phenomenon is
described, defined and understood. This can build a greater understanding of
the concept which can be shared. For example, in quality of life research, a
clearer understanding of the concept has emerged over time, with studies
presenting their own definitions of quality of life and suggesting its content
through the identification of key dimensions of quality of life, which include
physical functioning, emotional well-being, social functioning among others
(Streiner and Norman 2005). In PPI, conceptual and theoretical development
has been relatively limited. Studies undertaken to develop our conceptual
thinking have varied in their focus and approach. Work has been undertaken
by Pivok (2003), Abelson (2007), and McCormick (2004) attempted to identify
the processes, obstacles and benefits of lay involvement from previous
experience of PPI. Telford et al (2005) attempted to ascertain the principles
and indicators of successful involvement through a more formal Delphi
process. Such work is very helpful in starting to develop a deeper
understanding of PPI and start to unravel the components of PPI and the
ways in which these different components could be captured or measured.
More recently, there have been attempts to develop a multidimensional
framework to help draw out the implications of PPI for policy and practice
(Oliver et al 2008). These more complex attempts to conceptualise and model
PPI are important because they illustrate the trajectory required for future
conceptual and theoretical modelling of PPI, which needs to go further in
capturing the complexity of this activity. A conceptual model or theory can be
helpful in explaining a concept by offering a model of how it might work. For
example, a theory could identify the components or variables that influence
PPI, or the variables that might be influenced by it. Theoretical models are
also helpful because they can be tested empirically to establish their
trustworthiness and utility. Theoretical models can also be helpful in guiding
the capture or measurement of impact, as they essentially provide a
“blueprint” for developing instruments to measure impact. To date, there have
been no attempts to develop a comprehensive theory of PPI which has been
tested.
More recent theorising has drawn on the political and cultural complexity of
involvement to produce a four dimensional framework for analysing the nature
of involvement. It is argued that the dimensions could then provide the ciordinates along which new knowledge space can be created (Gibson et al
2012). This could offer a very helpful way of conceptualising online forms of
involvement, to be developed in a paper.
1.2 Traditional ways of involving and engaging with the public
1.2.1 Ways of working
Traditional forms of involvement are often characterised by attempts to ensure
respectful and collaborative ways of working. Shaping Our Lives, a User
Organisation in mental health outlines their vision of society as:
A society which is equal and fair where all people have the same opportunities,
choices, rights and responsibilities – a society where people have choice and
control over the way they live and the support services they use.
Underpinning the INVOLVE guidance, adapted from Shaping our Lives
guidance, is an appreciation of the need for collaboration, respect and valuing
the contribution of others. There are vital elements of context and process
which underpin good collaborative involvement. To some extent they assume
face-to-face contact but many aspects could be transferable to other settings,
including online ones.
INVOLVE Ways of Working
-
Respect what each person needs, to join in the meeting.
-
Respect and value that everyone is different and will think differently
about things.
-
Listen to each other.
-
Only one person to speak at a time (do not interrupt person speaking).
-
Be aware that covering your mouth while speaking might make it
difficult for someone to read your lips or hear what you say.
-
Use plain and simple English
-
Avoid jargon and abbreviations
-
If you don’t understand what someone is saying – ask them to explain
or repeat it.
-
In any reports or discussions after meetings do not use people’s names
when personal things have been discussed, for example when people
talk about something that has happened to them in confidence.
-
Switch off mobile phones.
INVOLVE 2012
1.2.2 Methods of involvement
A range of approaches to involving or engaging with the public exist. As
already outlined key distinctions are made between collaborative and
consultative approaches. Consultation refers to asking members of the public
for their views to inform decision-making. This approach can be very helpful to
understand a range of views when developing an area of research. Methods
can include interviews, questionnaires, focus groups or meetings. However
this approach can be seen as a more passive form of involvement, which can
be frustrating for members of the public who want to be more actively
involved. Some members of the public can report feeling their views were not
listened to when they are not part of a process that synthesises and reflects
those views. INVOLVE (2012) recommend giving people enough time to
respond, feedback on actions and asking if people want to heat the outcomes
of research. Collaboration involves an on-going partnership where decisions
are shared. For example, researchers may work with members of the public to
develop a research bid (Staniszewska 2007). This approach can be used with
a wide range of research activities, helping to ensure research remains
focused and relevant.
Traditional methods for involving or engaging members of the public often
involve some form of face-to-face interaction, either at an individual level or at
a group level. These can include meetings, for example project advisory
groups, reference groups, public events or workshops (INVOLVE 2012). User
advisory or reference groups often meet face-to-face. The planning of these
meetings is often crucial to their success and can impact on how people feel
about a study or activity and their involvement with it. Individuals can be
drawn from groups that already exist or recruited for the purposes of a
particular study. The conduct of any type of meeting or interaction is equally
important, as already outlined in the INVOLVE ways of working. The role of
the chair is vital in ensuring all participants feel welcome and that everyone
has an equal voice in the group. Some individuals may need to discuss the
aim and content of the meeting by phone before the event so they feel fully
briefed. Good practice, as defined by INVOLVE (2012) also suggest that basic
but important things such as name badges in large clear text font. It is
important that ground rules and ways of working are agreed at the start and
incorporate key elements such as respectful listening.
In addition to meeting face-to-face research studies that involve the public can
use a range of virtual methods, although these are often used with
established groups who may already be familiar with the researchers or with
the study, for example email or phone discussions. Less often are members
of the public involved only through virtual means of communication. Table 1
summarises some of the characteristics of more traditional forms of
involvement (some indicators of good practice in involvement) and considers
the implications of translating these into an on-line setting using existing
content.
Table 1. Comparison of aspects of traditional forms of involvement with
the use of on-line approaches
Aspects of involvement
Ways of working
Involvement develops over
time
Development of
relationships through faceto-face contact
Traditional forms of
involvement
Using existing on-line
content
Traditional forms of
involvement often develop over
time, with the creation of
appropriate context and
process (elements outlined in
this table) to maximise
contribution. Such development
over time is more desirable
than one-off forms of
involvement
Development of relationships,
through face-to-face contact,
can be important in group
social cohesion
Developing involvement over
time may be more
challenging in on-line setting
so some of the benefits of
appropriate context and
process (outlined in this
table may be lost). Some of
these elements are less
relevant in on-line settings
Creating buddy or mentor
systems
It is important that members of
the public are supported in the
process of involvement
Being flexible about the
methods used to involve
the public within meetings
Researchers need to be
flexible about the ways in which
members of the public are
involved. For example, some
people prefer working in small
groups.
The development of
relationships between
individuals may be difficult in
an on-line setting if people
have already contributed, or
may take longer. They may
also be less appropriate in
this context. In some
contexts individuals may feel
freer to contribute their views
when peers are not present
to moderate those views
Perhaps less relevant for online forms of communication,
although variations of
traditional mentoring or
buddy support could be
considered where
appropriate, although likely to
be less effective than face-toface interaction
On-line forms of interaction
provide their own flexibility
but may be more restricted if
someone prefers to utilise
other forms of
communication. On-line
forms of involvement rely on
people making their
contributions very public.
Aspects of involvement
Having more than one
member of the public at a
meeting
Two-way communication
Traditional forms of
involvement
Having at least two members
of the public on a group or
committee ensures they have
some peer support, important
to ensure their active
contribution
Collaborative approaches
depend on partnership and
two-way communication
Feedback of results
Researchers need to feed
back their thinking or results,
both at the end of the study
and during its development,
for example in the analysis of
data
Speed of response
Can be relatively slow,
relying on meetings, email or
phone contact
Having time to respond
Giving members of the public
time to respond and form a
view can be very important,
particularly in deliberative
approaches that rely on the
development of perspective
based on supplied
information
Importance of facilitator
The facilitator or moderator
has a very important role in
facilitating contributions and
supporting the process
Partnership, value and
respect
A sense of partnership and
people feeling valued and
respected
Using existing on-line
content
People contributing in on-line
settings may not feel any
supported by peers to
contribute their views, or may
not feel the need for such
support
Two-way communication
which has the same
immediacy may be difficult in
on-line settings, although it
may be less relevant or less
desired. The contributor may
prefer the one way
communication of their ideas
with no response.
Feedback of results may be
possible in an on-line setting,
although more immediate
interactions with people
about areas such as data
synthesis may be more
difficult
Can be very immediate
While immediacy of response
is an advantage, building
time to respond into on-line
forums may be more
challenging in some respects
as it relies on an individual
returning to the on-line
interaction having read
relevant information
The role of facilitator may not
exist in the same way or may
be more challenging in an
on-line setting and may offer
less social support to enable
contribution. The role may be
more of a moderator
ensuring contributions are
acceptable to others.
It may be more difficult to
create feelings of partnership
in online settings
Aspects of involvement
Practical characteristics
Venue importance
Timing
Accessible venues
Developing and
understanding of the
respective skills and
knowledge that researchers
and user may bring to an
interaction
Payment and recognition
Nature of data
Individual and group level
feedback
Use of information for
deliberation
Traditional forms of
involvement
Using existing on-line
content
Finding a venue that people
feel comfortable in is
important and sometimes this
needs to be in people’s own
environment or on neutral
ground
Organising meetings at a
time to suit people is
important, particularly for
those with other
commitments, eg. carers or
if they have some distance to
travel
Ensuring people’s needs for
accessibility are met, in
addition to other needs such
as dietary requirements.
Practical issues such as
ensuring hearing loops work
are important
Traditional forms of
involvement rely on an
acknowledgement of the
expertise that different
people bring to a meeting or
interaction
This is less relevant for online settings although it is
unclear how people will the
online environment in relation
to its comfort and neutrality
Some members of the public
and some researchers view
payment as a vital part of
recognising individual
contribution
It is unclear how these
perspectives would translate
to an online context
Traditional forms of
involvement include both
individual feedback and that
produced by the synthesis
and sometimes consensus
that comes from a group
dynamic
Traditional forms of
involvement often supply
participants with data or
information on which to base
the development of views
On-line feedback may be
predominantly at an
individual level. It may be
harder to get a sense of how
this may change through
group interaction into grouplevel feedback
The provision of information
or data online is very feasible
but the opportunity to discuss
this may be limited.
Timing may be less of an
issue when working with online data or when contributing
on-line
These issues may have less
relevance in the on-line
context
The skills, knowledge and
expertise that people bring to
an online encounter or use of
online data may be harder to
judge
Aspects of involvement
Individual public benefits
Feeling listened to and
empowered
People feeling they are
giving something back
People feeling they are doing
something meaningful for the
research community
Public having enhanced
knowledge of research and
greater trust in researchers
Improved knowledge of
management of condition
People gaining research
skills, confidence, listening
skills
Individual researcher
benefits
Gaining fresh insight into
issues
Beliefs and attitudes
challenged
Traditional forms of
involvement
Using existing on-line
content
Traditional forms of
involvement can lead to
people feeling listened to and
empowered
Very important in some
research studies
It is not clear whether
contributing to an on-line
forum would lead to feelings
of empowerment
Might be more difficult to
achieve or judge through the
medium of providing on-line
content
Unclear how this may affect
provision of input to create
on-line content
This may be more difficult to
achieve in an on-line setting
or may be hard to judge
whether this happened
Difficult to judge – this may
happen anyway for
individuals who access online
information
Unclear whether it is possible
to judge this from on-line
interactions
Vital in many studies and
often prime motivator for
continued involvement
This can be an important
persona benefit which means
people continue their
involvement with research
People are often involved to
develop knowledge of their
condition or better manage it
An important capacity issue –
generating an informed
public who can contribute
Researchers value this
enormously, but often this
information is contextualised
within the other elements
described in this table
This usually happens in a
relatively ‘safe’ environment
with social norms and ground
rules established
Greater understanding of
community health needs
Some researchers report the
benefits of face-to-face
interactions providing more
insights than any report
Building good rapport with
members of the public
Working with members of the
public who want to make a
difference eg. improve
services
Very important for the
creation of useful dialogue
Vital in ensuring motivation
and keeping research focus
This may happen in on-line
settings, but is likely to be
context-less
The online context may be
more intimidating for
researchers faced with
receiving challenging
information in a context-less
way, without social support
from the public to mediate
this
This may be difficult in an
online context, which may
feel more like reading a
report than generating insight
through interaction
May be difficult but not
impossible
May be more difficult to
encourage contribution when
harder for public to judge
whether their contribution
would lead to change
Commentary on Andrew Oswald-related blogs
Description of data
The data consisted of 207 pages of responses to articles of blogs that
synthesise some of the key messages from papers published by Andrew
Oswald. The data were in a printed format and did not include any
screenshots of the website or blog details.
Method of appraisal
The data was read through in a broad analytical way. Key themes of trends
were observed, although structured data analysis was not carried out. This
stage was equivalent to the sensitising initial phase of data analysis where the
reader becomes familiar with the data before more formal analysis.
Overall impressions
The appraisal presented below draws out some of the key themes and trends
observed.
The missing architecture of involvement
Public involvement is usually characterised by interactions between members
of public meeting (in some form) with researchers or those leading projects.
These interactions are usually supported by appropriate context and process
to ensure successful involvement. These context and process elements form
the overarching architecture for involvement. As a researcher who is often
involved in these interactions, reading through the Andrew Oswald data lead
to a perception that the usual architecture required for involvement was
missing, leading to a perception of disembodied involvement, a sense that
comments almost floated in space, without an insight into their origin or how
they related to each other and the extent to which they could contribute to the
researchers work. As a public knowledge space the online ‘place’ felt
somewhat disembodied from the more traditional context that ‘root’ public
involvement and make potential contribution much clearer. It is possible that
with the appropriate website design some elements of context and process
(the roots of involvement) could be replicated – for example ensuring people
agreed to specific ways of working before making a contribution and by
stating how comments would be fed back and used by researchers. In
summary, there may be ways of providing architecture for online forms of
involvement that enable some of the benefits of more traditional forms of
involvement to be realised. Alternatively the on-line setting could be viewed as
a very different form of public knowledge space with different requirements.
Ethical permissions
Traditional forms of involvement usually require some consideration of the
ethical aspects of any interaction. While collaborative public involvement does
not require ethical approval, it still requires ethical aspects to be considered.
The online setting is not dissimilar in relation to risk and the harm that could
be caused to an individual. The Oswald data did not contain any reference to
any ethical stipulations that commentators may need to be aware of or adhere
to, although the websites it originated from may have some stipulations. For
the purposes of this overview, all data has been annonymised with no use of
any identifiers.
Lack of clarity about the level of involvement
In traditional forms of involvement the level of involvement can be decided at
the start of a study and can determine ways of working. For example, some
studies make it very clear that they are operating in a collaborative model and
set up ways of working that reflect this. This provides an important context for
the nature of the contribution people will make. While the online forums clearly
focus on encouraging comments, they do not appear to be underpinned by
any explicit model of involvement that drives the type of contribution they
might expect. If the Andrew Oswald comments were to be placed within the
INVOLVE description of levels, the comments could be described as mostly
consultative – comments being offered by the public to the researchers with
no certainty of recognition or the extent to which they might influence the
research. In some ways, their contribution could even be seen as a lesser
form of consultation, in that the Andrew Oswald has not solicited them in any
way, and it is not even clear if he would be aware of them or respond to them
or utilise them in his thinking. Thus, some guidance on the nature of the
contribution may help contributors contextualise their comments more
appropriately or help them shape or direct more specific contributions.
The line of argument
Traditional forms of involvement often include a focus, that is, a specific
research question or data set, which a public involvement reference group
discuss or review. In contrast, online forms of interaction may focus on a
whole paper or article about a topic area, without the same focus on a
particular research question or theme within a set of data. The consequences
of this are that the online comments can be very broad and lack focus. They
are also very much dependant on the interest of the commentator as no clear
direction is provided by a facilitator, as it would be in more traditional forms of
involvement. The line of argument or thread running through a set of
comments that can occur in face-to-face interactions can therefore be difficult
to find or follow, as commentators do not always pick up a line of argument
from the previous contribution. Instead, contributions can jump around, with
comments reflecting a participant’s own particular area of interest, rather than
the research article. While this can be interesting its overall effect seems to be
to dilute the potential impact of involvement. Overall, it feels like a scattergun
commentary, sometimes with little to draw it together as a cogent
commentary.
The detail of the commentary
In a face-to-face setting the researcher or facilitator can ensure the discussion
is as specific as it needs to be to maximise the contribution of the participants
to the topic under discussion. While there were some examples of
commentary about the specific research and methods, the comments are
often broad and can lack the specific depth and detail that a researcher may
need to enable them to move forward in their thinking. For example, the
development of a research question requires significant in-depth deliberation
and justification of view to refine a focused question. If the aim of online
discussion is to generate any level of commentary that contributes to
research, further support would be required. Many of the broader comments
made online were still helpful in other ways, such as providing insight into
peoples’ views about a topic and did feel very similar in nature to those which
can occur in a face-to-face setting when a broad topic is being discussed.
Interactions between commentators
In a face-to face setting the interaction between participants can help shape
thinking and discussion and can be vital in providing a context conducive to
collaborative involvement and contribution. This was harder to judge in an online setting. There were some examples of people building on each other’s
thoughts and also positively reinforcing each others’ perspectives. Eg. page
21. However, there were probably more examples of meandering discussion
without a clear focus. The interactions between commentators could also
become very negative and insulting, making the space feel potentially
intimidating and unsafe for potential contributors. For example, page 64, 65,
67.
The importance of a facilitator
Traditional forms of involvement often rely on careful facilitation to ensure the
context and process are appropriate in creating the potential for contribution.
They are a key part of the architecture for involvement. The role of facilitator
appeared completely absent in the Andrew Oswald commentary, although
there was evidence of some moderator removal of comments, although no
information on the reason for removal was provided. The importance of the
facilitator in brokering discussion and ensuring focus and good group
processes was palpably absent and the subsequent quality of some of the
discussion could be considered to be of a differing and possibly lower quality
to that which could be achieved in a face-to-face setting by a good facilitator
who can enable high quality discussion.
Sense of community
Public involvement in health research studies can often contribute to the
development of communities of practice – groups of service or research users
who develop a collective sense of identity. This becomes very important in
underpinning their contributions and in can be expressed tacitly in ways of
working and in the interactions people feel. While the Oswald commentary
was made up on a set of contributions, it was very hard to judge whether this
originated from a community of any type or whether it was a collection of
comments from a diverse and unconnected set of individuals. There was
some evidence that a few people were aware of others and their past
contributions, but this was limited. The seemingly disparate nature of the
group who contributed might make the development of any type of community
more challenging, unless a website specifically set out to do this.
The use of personal experience
More traditional forms of involvement often rely on personal experiences
which often motivate people to contribute. The use of personal experiences in
this way was replicated in the Oswald commentary, with people often linking
their contributions to their past experience which had formed their current
view. In this way there were some important similarities between online and
more traditional forms of involvement where personal experiences can be an
important motivator for contribution and an important source of information to
draw on. However, in face-to-face interactions there may be more direct
application of those personal experiences to the focus of the discussion.
The role of critical evaluation
Many of the contributions on the Oswald papers were descriptive in nature,
often commenting on the content of his studies, sometimes challenging the
findings based on opinion and past experiences. There was also some
evidence of critical evaluation, such as critique of methods or statistical
analysis. There appeared to be very little challenge using literature from the
same area of study, which can happen in more traditional forms of
involvement, where participants have access to a range of research which
can ensure evidence-based deliberation. As such the quality of the discussion
on the Oswald data could be limited to comments about the adequacy of a
correlation, with no further discussion or response on the implications of what
this really meant for the validity and reliability of study findings. Overall, the
use of a wider evidence base was poor in discussions.
The recording of involvement
Traditional forms of involvement can be recorded in a variety of ways.
Sometimes meetings can be recoded and transcribed or notes can be kept.
However these are costly and time-consuming to produce. A major advantage
of online commentary is that is already transcribed and available for review
and analysis.
A public knowledge space
As a public knowledge space the online settings offers much potential as a
place where different forms of evidence, knowledge and experience come
together. While the Oswald commentary is relatively one-sided and there is
limited interaction between different forms of knowledge, there is potential to
generate a more interactive ‘knowledge space’ (Elliott and Williams 2008).
There was some evidence that the commentators constituted different publics,
in that their underpinning philosophical, ideological and political perspectives
differed. As a public knowledge space this one also holds certain types of
threat, through the insults that are sometimes made by commentators against
each other and against the researcher. Some comments had been removed
so it is not clear if there were some litigious commentary.
Cost of involvement
Traditional forms of involvement always incur a cost and so their potential can
be restricted. While establishing a web-site or forum for interaction may entail
a cost, the potential for minimising future costs is significant. In addition, as
the data is already available in narrative format, with appropriate permissions,
it could be imported into analysis packages for a fraction of the cost which is
usually attached to transcription services.
Lack of interaction with researchers
While much patient and public involvement is based on interactions and
discussion, the web-based commentary was notable by its lack of interaction
with the researcher. Therefore there was no opportunity for researchers to
respond to the comments or challenges made and for the discussion to then
continue. In many respects it therefore felt ‘one-side’ with no limited
opportunity for the development of dialogue with the researcher or research
team. In addition it was not possible to prove contributors to gain a better
understanding of their rationale. It was then dependant on the contributors to
develop a thread or discussion, which varied in its success.
Nature of contributions
While some of the limitations of the online interactions have been identified
and compared with more traditional forms of involvement, it was possible to
identify a range of types of contribution that commentators made on the
Andrew Oswald data, although these examples are often quite ‘thin’ in terms
of their content and in some cases there are only a few examples of the
different types. In additions these contributions are rarely deliberative ie. the
refined view of someone who has read relevant literature and has a good
grasp of key issues. While there are some clear examples of contribution,
there was also extensive tranches of text which did not relate to the subject of
interest with commentators taking the opportunity of a public setting to voice a
range of views. Online forms of involvement or engagement thus offer the
challenge of capturing data that relates to an actual research study. Of the
relatively small amount that does focus on the actual research, there were
some helpful contributions, summarised in table 2, which demonstrate the
potential for involvement. There may be ways of facilitating these more helpful
contributions in online contexts, with some suggestions made at the end of
this report.
The table below summarises these and links them to the relevant page
number. The page links are illustrative rather than exhaustive of all comments
of this type.
Table 2 – A selection of different types of contribution (some have to
be read in the context of wider data)
Type of contribution related to research
Page
Commentary on data – there were examples of where people
precede information taken from a paper and offered a commentary.
For example, “After analyzing data on the self-reported levels of sexual activity and happiness of 16,000
8,188
people, Dartmouth College's Bruce V. Rauner Professor of Economics David Blanchflower and Andrew Oswald of
the University of Warwick in England report that sex "enters so strongly (and) positively in happiness equations"
that they estimate increasing intercourse from once a month to once a week is equivalent to the amount of
happiness generated by getting an additional $50,000 in income for the average American. (P8).
Summary or synthesis of research – for example, “This article is pretty long, but if 14
you get to the bottom of it, it tries to equate certain life events to the impact on people's happiness (which is a little
weird, but an interesting concept.)
Commentary on nature of concepts – for example, They said, when commenting
on the fact that based on surveys, having children adds absolutely $0 to people's "emotional wealth", *We can't
believe it either. "It's one of the most surprising results," says Oswald. "There's no value judgment implied. All it's
saying is that people without children recorded equally high happiness levels as people with children."
Doesn't surprise ME any! The only surprise to me is that they didn't show up in the negative numbers (but I'm sure
all those "it's all worrrttth it" people skewed the results).” (P14)
A personal assessment or view of the results and whether they fit the
norm or are unusual, for example, “All it's saying is that people without children recorded
14,18
8
14
equally high happiness levels as people with children"
EQUALLY..'alone' isn't 'lonely.'
Questioning the methods or validity “Ya know they are lying!
If they were truly being
15, 81
honest in this survey, I bet you there would be negative numbers.”
Attempts to understand and interpret data
“Understanding the value and values of all beings is certainly necessary to interact with the word; however, what
happens when we give to one own esteem a kind of priority on the rest? Focusing on self-esteem may result in the
vicious circle: self-esteem, self, self-interest, greed, feeling disconnected from other people, need to reinforce selfesteem, etc. What about leaving self-esteem (which is strongly conditional) and moving towards acceptance
(unconditional), appreciation and embracing? Would this have a beneficial impact and lower suicide rates in the
15,
43,46
happiest countries? “(p43)
Querying data or questioning conclusions, for example, “This is strange. In the
15, 23
US, people are happier when they grew older. Thus, elderly people are much happier compared to middle aged
people and they also feel "younger" too. In Singapore, the elderly people are worse among all age group. They are
the most unhappy and they also have the most health problems.”
Drawing on other studies to challenge results, for example, “More likely the
15
impact of children was actually negative and it was softened to zero. I've read plenty of other articles that say that
marriages with children are not nearly as happy as those without or those where the children have already grown
up and left home.”
Extrapolation of findings to other settings, for example, “Low blood pressure
16
means higher economic growth and happier people. No wonder Singaporean are not happy because more than 1
million people or 25% of the population are suffering from high blood pressure and diabetes.”
Humour and comedy and surprise at the nature of research
18
“Well then.. Peter.. will you marry me? ;) Hehe.. Interesting that there's even a formula for marriage now.. :)”
Interpretation of findings and critique of formula, for example,
19,83
“If there is a formula it is very very complex :) > (or is it?) In this case it was just vague. r = h(u(y,z,t)) + e means,
in laymans terms: "How happy you really are depends on how much money you have, what kind of person you are,
and when you are asked. Of course some people don't tell the whole truth when they _are_ asked, and we all make
mistakes." I.e. the formula doesn't tell you anything you don't already know.”
Critique based on real world conceptualisation and a broader view of
the data, for example, “With the highest foreclosure rates and highest unemployement rates,
27
obviously someone is not doing their homework.” Next response: “And didn't some futurists in the 20th Century
predict that we'd live in a postindustrial leisure society by now, or at least have one in foreseeable reach? “
Expression of ideological perspectives, for example, “teach a man to be
28
employed and he will thank you. Teach him to suckle the lotus blossom of unemployment benefits and he will be a
boon to society.”
Reinforcement of tacit ground rules for interaction provided by
website, for example, “Please stay on topic and be respectful of others. Keep the conversation
33
appropriate for interested readers across the map.”
Identifying patterns in the data and adding interpretation, for example, 34
“the suicides are where the money is, humm"
Identifying spin in research findings, for example, “That article (From the SLtrib)
35
puts an interesting spin on this data. I was expecting an article about why people might be depressed in the culture
of Utah. Instead its an article saying that Utah is so happy and great that a few outsiders that happen to be stuck
there might see how far they are away from happiness and be more depressed than they otherwise would be- like in
a state with just regular amounts of happiness. I know I am liberally paraphrasing, but that is how it felt. Very
interesting spin."
Broader questioning the need for the research and its origins, for
example, “Why are people at the Federal Reserve Bank studying happiness and suicide rates?”
Offering opposite or contrary explanations, for example, “It's very simple. It's
35
43,44
the Cognitive Dissonance engendered by the prevailing religious influence...and the Perma-Smile engendered by
the Cognitive Dissonance. Some people don't do well with the demands of living within a fake so called
"truth".........”
Detailed explorations of rationale, for example, “There are many reasons why a
46,88
person commits suicide and the method they choose to use to carry out the deed. I find it interesting that guns are
the only “weapon” listed as a “blame” for suicide when in fact prescription drugs (yes folks handed out by your
friendly family doctor), hanging, asphyxiation, knives or razors, etc., are also methods commonly used. How can a
study even begin to understand the “why” of suicide unless it addresses the “who” commits suicide? Addressing
the gender of who commits suicide may be highly relevant when trying to figure out the “whys” for suicide. What
are the statistics of men, women and children who commit suicide? Get some detailed facts and then branch out
from there. I’m betting women commit suicide for different reasons then men and children for different reasons
than men or women. The methods of suicide may differ to some extent but it would be relevant as well. Start with
the gender and age reasons then narrow it down to method, family history, religious affiliation, education, mental
health history, medical history, drug history, social expectations, etc. Bottom line is gender (to include the gay
community) and age is major considerations in a suicidal study before one can even begin to gain a remote
understanding into the reasons why a person commits suicide.”
Evidence of social interaction and some form of community, for
example,“SaltyPepper - Hey nungy! Long time no see - hope all's well with you.
47,57
IMHO, in dealing with both men and women who have tried, failed, and succeeded, in many cases, women will
attempt suicide as a cry for help whereas help is not even something men will consider as an option.
Nungwa Finals are upon me. At least I'm liking my class this semester.
I think men tend to be more direct in their approach to suicide -- which means they don't have the opportunity to
give it a second thought. Either way, it's a tragically final solution.”
Politically or religiously contextualised explanations (occasionally
insulting), for example “Looks to me that the "Red States" generally have the happiest residents, and
the "Blue (democratic) States" generally are the least happy.”
Detailed academic explanation of study results, for example, “Posted this
47,48,
50,
53,54,
55
49
before, but didn't really go into much detail. The findings of this study are ridiculously weak. Correlation
coefficient measures the strength of a trend in statistical analysis. A CC of .8 is strong evidence of a positive trend.
A CC of .5 is weak evidence of a positive trend. The CC of these figures' trendline is .256, barely half that of what
would be considered weak evidence. Basically, it's barely a blip of a finding. To put this in perspective, there's an
inverse correlation coefficient of .14 between the alphabetic position of your state's abbreviation and suicide. The
evidence in support of a conclusion that you're less likely to commit suicide as you move up Alaska to Alabama to
Arkansas ... to Wyoming is over half that of the article's study. If you plug the states into a spreadsheet, you'll see
this, yourself. They're all over the place in comparison of well-being and suicide rates. Not just a few exceptions,
but a far greater number of exceptions than coincidences. You could modify only 3 states' figures to flip the
"trend." It's a slightly interesting study, but the findings are so incredibly weak that for the Tribune to publish it
without stating that is sensationalist.And journalists wonder why scientists don't trust them ...”
Querying utility/application of information, for example, “I would find it very
49
interesting to know what a society does with this information to change the trend.”
Drawing on the collective in response, for example, “It’s on deaf ears because
50
nobody agrees with you! They think you are crazy and obviously have an axe to grind. Let it go and live YOUR
life.”
Insight into the feelings of others, for example, “I do agree with you fully. I didn't
mean to be rude. Although I have only experienced depressed pets. My dog stops eating when i leave town. No
laughing matter.I feel truly sorry for any human who experiences depression.”
52
Type of contribution related to research
Page
Insulting or blaming comments (sometimes to researcher), for
example, “Hippies are not right and x is a kook.”
54,13
9,
163,1
86
55,
172,1
73
Close critique of the analysis on others by linking to original article
and data and questioning the veracity of the findings, for example,
“But Andrew Oswald's values are also subjective - I'm just arguing that imputing subjective values does not
necessarily make his argument stronger. (I would argue that the moral benefits of a work ethic are stronger than his
values - but I accept that some people might not agree with me).[quote:9e1332cf06]I think your argument is funny
you should find( or maybe you've already got) a fit bird who holds similar value and you two make deals...
however, in case either of the you lost your exchange value( i.e. money, beauty, power, health, employment etc.),
the other party could easily turn to someone else who makes a higher offering...according to your statement.
If you read my argument I don't say that money and physical attraction is the only thing in a relationship (nor
should it be). I'm just saying that all things being equal someone with average personality and looks but who is
financially successful is more likely to attract an extremely attractive member of the opposite sex (and I think I
have a good taste in women) than someone who has average personality and looks and is not financially successful.
I'm definitely not advocating people chopping and changing relationships (in fact I'm against divorce) -- just trying
to extend a note of realism into this debate.”
Using personal experiences to recalibrate or refocus the debate, for
example, “I never really understood what the true meaning of depression was until I experienced it first
60,71
hand. When my sister died I literally lost my mind and I did not want to go on I felt like an empty shell. It got to
the point where I felt no pain, no anger or sadness, I simply felt nothing and to me that was the the worst feeling
ever, my friend described me as an empty coffin of a man that she once knew.
If I wasn't surrounded by my family, friends, tough love, compassion, and professional mental health I would have
taken the cowards way out. The pain will always live but now I know how to manage it and be happy at the same
time. Sadly there are so many people that don't have these options and become overwhelmed with sadness and end
their lives. Sometimes all you can do is let the train hit you and then try to find your legs.”
Identifying possible future areas for research, research questions, for
example, “Has anyone studied the connection between depression/suicide and social pressure to give the
62,11
1
appearance of happiness even when it is not felt?”
Detailed comment on nature/aspect of research method, for example,
“Correlation is not necessarily causation.”
Attempts to re-analyse and re-interpret data, for example, There is good
72,75,
77,79,
80,92
109
evidence that depressed people have more accurate views of their life. If regions differ in their REPORTED level
of happiness, it could be due to cultural norms. That is to say, if more people in an area exaggerate their level of
satisfaction, or for some reason feel more satisfied then they ought to considering the reality on the ground, the
average person will feel pressured to agree with the majority and so will also report general life satisfaction. The
effect of this "happiness bubble" is that those with a very realistic view of life, e.g. depressed people, will feel even
more out of touch with other people in the community. This could make those people feel even more hopeless and
drive them to suicide, compared to people who live around other people with less happiness inflation, so to speak.
report Fig1024 Apr 21, 2011 Rank: 3.8 / 5 (4) letting all the unhappy people kill themselves is one way to boost the
average happiness level.”
Challenging assumptions of the study, not always with clear rationale, 138,
for example, T”he basic assumptions of the study are false and as such the whole study is a joke. 1. polls, 140
just because people say they are happy doesn’t mean they are. Many people that have tough lives will say they are
happy because it helps them keep a good outlook on a bad situation. Some cultures are far less likely to express
happiness even when they are happy. 2. The quality of life calculations are full of false assumptions. such as
housing costs. The reason it costs more to live in California is because more people want to live here. It costs more
to live in paradise(weather) then it does to live in a swamp, that doesn't mean the people in the swamp have a better
quality of life.”
Commentary drawing on a wider literature, for example, "The American
people are not a people anymore; they are an audience" - Kurt Vonnegut.”
Commentary on concept or definition, for example, “Happiness is an agreeable
142,1
60,16
5
158,1
feeling or condition arising from good fortune or propitious happening of any kind. It is the possession of those
circumstances or that state of being which is attended with enjoyment. It is associated with good luck, good
fortune, prosperity, well-being, delight, health, safety, and love. Happiness is generic, and is applied to almost
every kind of enjoyment except that of the animal appetites.”
66
Fatal flaw critique, for example “So not only are they making wrong conclusions about
185
unhappiness associated with feminism, there's a likely chance that they're wrong about "the unhappiness trend" in
the first place.”
Wider social critique of study implications, for example, “In here we are
188
unhappy because smart women have no place. You know what they say - intelligent girls are more depressed.
Interesting discussion. Like most here, though, I doubt modern women's unhappiness is the fault of feminism.”
Considering policy implications, for example “Whatever the case, I think policies
200
should be considered in the light of how they maximize the total well-being of the total populace in social,
economic, health and even happiness terms. Just looking at the total population would be an improvement over the
current situation.”
Positive comments on posts enhancing community, for example, “very
informative post.”
200,2
01,20
4
A future vision for involvement online
A vision of good online public involvement drawing on good practice from
traditional forms of involvement to an online context.
Underpinnings
• Developing a community over time where people understand each other,
there is trust, humility and humanity underpinning interactions.
• Attention paid to context and process factors
• Deliberative potential
• Refinement of debate and facilitation to ensure research focus
• Some feedback from researcher
• Opportunity for deliberative involvement with participants provided with key
information in an easily accessible way.
• Careful facilitation which ensures that participation focuses on key issues
and there is moderation of social processes.
• Some training is provided on research.
• Potential for researcher to have an input into the discussion.
• Buddying or mentoring for new participants.