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Pratesi, A. Sixsmith, J., Woolrych, R. (2012) ‘Participatory design for future care related technologies: lessons from the Smart Distress Monitor Project’. International Community Psychology: Community Approaches to Contemporary Social Problems Vol. II. Publication: July 2012.

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Recent UK government policy has highlighted the value of user involvement in service development, particularly concerning assistive technologies and their role in providing care. This article illustrates the case of a person-centred, participatory project involving older people in the design, implementation and development of innovative technological solutions to enable older people to live independently and age-in-place within their homes and communities. The research aims and objectives included: the identification of technological, psychological and social needs of older people; the definition of user requirements to inform an activity monitoring system for use in private homes and residential care settings; and the analysis of the ways in which such systems impact on the everyday lives of older adults in different settings. The innovative aspects of the user-driven, participatory approach illustrated in this paper concern the involvement of older people as co-researchers throughout the research process. This article reports the reflexive accounts which emerged during the project and provides viable and practical pathways to facilitate participatory research in the development of assistive technology for older adults. It provides practical guidelines for future user-driven, participatory research involving older adults in the design, development and implementation of assistive technologies. Our findings show that developing authentic, non-tokenistic research partnerships and including older people's ideas, motivations and perspectives in the design and development of these types of technology can lead to productive forms of mutual inspiration and technological solutions grounded in the experiences of older people.
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The Innovation Journal: The Public Sector Innovation Journal, 19(1), 2013, article 6.
Genuine partnership and equitable research:
Working with” older people for the development of a
smart activity monitoring system
Dr. A. Pratesi
Department of Social Studies & Counselling
University of Chester (UK)
CH1 4BJ
Room CBB 120
Tel +44(0) 1244 512033
Fax +44 (0) 124 451 1342
e-mail: a.pratesi@chester.ac.uk
Professor J. Sixsmith
University of Northampton (UK)
e-mail: Judith.Sixsmith@northampton.ac.uk
Dr R. Woolrych
SFU Gerontology Research Centre
Vancouver, BC, Canada.
e-mail: rwoolryc@sfu.ca
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Technological and Methodological Innovation:
Working “with” and “forOlder People to Develop a
Smart Activity Monitoring System
Alessandro Pratesi, Judith Sixsmith and Ryan Woolrych
ABSTRACT
Recent UK government policy has highlighted the value of user involvement in service
development, particularly concerning assistive technologies and their role in providing care.
This article illustrates the case of a person-centred, participatory project involving older people
in the design, implementation and development of innovative technological solutions to enable
older people to live independently and age-in-place within their homes and communities. The
research aims and objectives included: the identification of technological, psychological and
social needs of older people; the definition of user requirements to inform an activity monitoring
system for use in private homes and residential care settings; and the analysis of the ways in
which such systems impact on the everyday lives of older adults in different settings.
The innovative aspects of the user-driven, participatory approach illustrated in this paper
concern the involvement of older people as co-researchers throughout the research process. This
article reports the reflexive accounts which emerged during the project and provides viable and
practical pathways to facilitate participatory research in the development of assistive technology
for older adults. It provides practical guidelines for future user-driven, participatory research
involving older adults in the design, development and implementation of assistive technologies.
Our findings show that developing authentic, non-tokenistic research partnerships and including
older people’s ideas, motivations and perspectives in the design and development of these types
of technology can lead to productive forms of mutual inspiration and technological solutions
grounded in the experiences of older people.
Keywords: Innovative assistive technologies, Innovative research partnerships, Smart Activity
Monitor, User-driven, Person-centred, Participatory research approaches, Older adults as co-
researchers.
Introduction
Too often the phenomenon of population ageing is perceived as a social problem, raising
new challenges in terms of health and social care services, housing, welfare, pensions and
benefits (Dunnell, 2008), while it can instead be framed in terms of potential resources positive
assets, capacities and social and emotional capital (Kinsella and Phillips, 2005; Pratesi, 2011). It
is in this context that innovative assistive technologies have increasingly been seen as one of the
viable pathways to increase cost-effectiveness, quality and choice in how health and social care
services are delivered (Vaarama, Pieper and Sixsmith, 2007 ). Recent health and social care
policy in the UK has recognised independence and well-being as an achievable goal for older
people through providing improved choice and control over the services they receive (DoH,
2005, 2006). Such policy encourages research into the development and application of assistive
technology for supporting and improving the quality of life of older and disabled people. In
conducting research with older people, the government encourages the involvement of users in
the research process (DoH, 2004) to improve the authenticity and quality of the research.
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Literature on participatory processes suggests that the active engagement of stakeholders
in the planning, design and implementation of research can be empowering for participants,
whilst yielding research findings which are grounded in the experiences of older people (Staley,
2009). Until recently, however, approaches to the design of assistive technology have largely
focussed on clinical, legal and technical issues associated with system design (Seelman, 2010).
Here, much of the research has primarily been problem-centred and based on existing
technological solutions which are then adapted to older people’s needs (Kruse, 1992;
Mollenkopf and Fozard, 2003) rather than person-centred, i.e. stemming from older people’s
lived experiences and progressing towards improving their quality of life. Working in
partnership with older people in the design of products to assist them recognises that older
people can make a positive contribution to the research and that their experiences provide
unique insights.
User-driven approaches have become more common within research on older people.
However, these often include users simply as test subjects in the evaluation of developing
technologies or involve users in tokenistic roles i.e. through only symbolic gestures of inclusion.
For example, keeping users informed about the research proposals but not involving them as
partners in the decision making process. It can be argued that tokenistic forms of engagement
can be worse than no participation at all, amounting to the manipulation of participants, who in
effect have little power over the development of the research (Dewar, 2005; Lane, 2005). A
more comprehensive person-centred, non-tokenistic and inclusive approach to system
development involves users’ input throughout the whole research process and in ways which
emphasises their power to effect change. The philosophy of person-centred design highlights the
importance of including users at each stage of the design process and by ensuring that user
requirements are captured and integrated into the product development lifecycle (Rubin, 1994;
Shneiderman, 1998). This can be achieved in a variety of ways to involve users such as: an
appropriate allocation of function between user and system, iterative design solutions, multi-
disciplinary research teams and user advisory boards (Maguire, 2001). Involving users in such
ways provides for a better fit between technology and the everyday environment of the user
(Salvo, 2009). Person-centred design allows user expectations to be effectively managed,
promoting a greater sense of ownership in the process (Preece et al., 1994; Sixsmith, 1999).
Whilst the debate on user-driven or person-centred approaches is not new (Williams and
Grant, 1998; Israel et al., 2001; Telford, Boote and Cooper, 2004; O’Connor and Cooper, 2005;
Weaver and Cousins, 2007; Sandoval et al., 2012), participatory research with older adult
communities in the development of assistive technology still represents a relatively young field
of inquiry. Moreover, while several studies have critically reflected on participatory research
processes following their completion, few have engaged in a continuous reflexive analysis to
feed forward into enhancing the experiences of participation for older people as the project
develops, a research gap highlighted by Fudge, Wolfe and McKevitt (2007). In their review of
studies involving older people as partners in the research process (rather than as research
subjects or informants) Fudge, Wolfe and McKevitt (2007) highlight the vast potentialities of
older adults, as key technology users, to be creative problem-solvers in their own right.
However, the authors also identify a number of barriers to involving older people in research,
such as socio-cultural barriers, research skills, health conditions and time and financial resources
and constraints. Additionally the review identifies only a small number of studies which involve
older people at all stages of the research process and little evidence is provided to reflect upon
the ways in which older people’s proactive involvement in research can be used as a systematic
method and applied to future research projects. All this confirms a shortfall in the literature and
highlights important research gaps, which require further exploration if we want to fully
understand the benefits of and improve participatory research on assistive technology which is
purposeful and engaging for older people.
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The aims of this article are to highlight the importance of participatory research
approaches with (rather than on) older adults in the field of assistive technologies and provide
pathways and practical suggestions which can be applied to future research projects. In doing so,
this paper reflects upon the technological, methodological, sociological and psychological
challenges of involving users in the design and development of innovative care related
technological products. Issues related to the development of trust and reciprocity between all the
research partners towards the application of authentic participatory processes will be illustrated
and discussed. As a preface to this, the next section will overview existing models of user-
centred and participatory processes, with a specific focus on those involve older people.
Models of participatory processes involving older people
Although participatory research with older people can be problematic, complex and
difficult to facilitate (Watt, Higgins and Kendrick, 2000) it can bring about positive results for
both participant and researcher (Hanley et al., 2003). Involving older people in the design and
development of assistive technology can yield a final product which more accurately matches
older people's requirements, resulting in more accessible and acceptable technologies (Eisma et
al., 2004). However, several key challenges make such involvement a difficult task: the
developmental process can be rather obscure and hard to grasp for non-technologists; the
concepts underpinning technological development can be difficult to grasp since such concepts
are often ground-breaking or represent blue sky thinking; and matching older people's
requirements to prospective technological solutions is not straightforward and needs a degree of
abstraction and visualisation which goes beyond usual modes of thinking. In addition, many
older people struggle to understand what constitutes research and their own role in the process.
Taken together, these challenges can make participation of older people in technology projects
merely tokenistic.
Eisma et al (2004) suggest that effective participation happens when the role of the
research participant is clearly explained, both the design process and the technologies are
explained in plain language and interactive hands-on elements are used wherever possible as
part of the data gathering process. Fudge, Wolfe and McKevitt (2007) emphasise that each
participatory project is unique, raising important ethical, philosophical and practical challenges
which will likely differ from project to project. Their review of projects involving older people
in research on assistive technology points to three recent studies (Lacey and MacNamara, 2000;
Marquis-Faulkes, McKenna and Newell, 2005; Seale et al., 2002). These studies demonstrate
the huge potentiality of older people, as key technology users, to be creative problem-solvers in
their own right. More specifically, Marquis-Faulkes, McKenna and Newell (2005) use
participative dramatised focus groups with older people to gather user requirements for a fall
monitor; Seale et al. (2002) apply a participative focus group methodology to facilitate older
people’s involvement in the design process of assistive technologies; and Lacey and
MacNamara (2000) highlight the importance of iterative changes (recommended by the users
themselves) in order to arrive at a final producta smart mobility aid for older peoplewhich
more accurately reflect users’ requirements and needs. However, when looking at the scope and
the extent of user involvement in the three studies, both Seale et al. (2002) and Marquis-Faulkes,
McKenna and Newell (2005) involve participants in only one phase of the research process, and
only Lacey and MacNamara (2000) engage older people in all stages of product development
from project definition to completion. Moreover, there is little evidence reflecting upon the ways
in which older people’s involvement in research, as a systematic approach, impacts on the
research process and the potential development of innovative technologies.
Researchers have proposed more structured and formalised ways of conducting
participatory research. For example, Reed, Weiner and Cook (2004) recognize the necessity of
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transforming the rhetoric of participatory processes into tangible user-centred processes and
outcomes. Their critical reflection draws on three individual research projects in which older
people’s partnership is analysed in different environments and settings. The extent of users’
participation within the three projects varies along a continuum that spans from involving users
as data sources to training them as co-researchers. The authors identify the different roles that
older people can occupy at each stage of the research process and discuss the possible ways in
which these roles can be effectively implemented. The article concludes highlighting the
necessity to develop models of participatory research able to subsume both ethical and
professional debates on this topic and to identify the practical issues associated with it.
Other scholars have attempted to outline more general frameworks and guidelines to
conduct effective participatory work. Such attempts are useful to understand the importance of
clarifying roles and degrees of involvement, communicating effectively and recognising
different expectations when conducting participatory research (Warbuton et al, 2009). Ross et al.
(2006) examine participatory research at a number of levels, including project management and
a consumer panel working alongside the research team and influencing the dissemination in
local falls prevention strategies. The authors draw out the issues related to the context and
method of involvement, and discuss the impact on research quality and local service
development in health and social care. Since context and research rationale vary across projects,
they suggest that there is no single scheme or model for involvement to recommend as
universally valid; nonetheless, they present a tentative model of involvement that proposes links
between research context, process and resulting impact and benefits. Here, importance is placed
on critically reflecting upon the development of participatory research as learning and changing
process rather than the prescriptive application of a set of methods or guidelines. Similarly, Van
den Hove (2006) recognises the limits of idealistic conceptions of participatory approaches
which do not adequately capture the heterogeneity of different perspectives. The author suggests
that research needs to re-situate the notion of negotiation within participatory research,
indicating that participatory approaches lie on a continuum between consensus-oriented
processes and compromise-oriented negotiations and arguing that, through the explicit
recognition of the negotiation dimension, both the quality and the effectiveness of participatory
processes can be significantly improved.
Researchers have also emphasized the need to engage in active debate concerning the
positive impact of participatory research with older people and the conditions which undermine
effective partnership. Dewar (2005) points to the fact that efforts to involve users at all stages of
research have not been as effective as they might be, particularly when the involvement
concerns older people. The author discusses a set of assumptions that need to be challenged to
go beyond tokenistic involvement and identifies key strategic issues that need to be considered
in order to promote and enable future effective partnership with older people. Among them, the
necessity to adopt a systematic approach to record participatory research processes and
outcomes, the ability to maintain a critical stance when undertaking such research and the
consideration that participation may not necessarily be a beneficial process for all subjects
involved. Beresford (2002) stresses the necessity to consider user involvement in research
critically and systematically, taking into account the diversity of approaches that have been
developed, and the need to develop equal and reciprocal partnerships between participants and
the various stakeholders. Given the multiple challenges involved in the application and
development of participatory processes and the need to reflect on field studies, in the following
section we provide an account of how these issues have been addressed within the Smart
Distress Monitor (SDM) project described below.
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Innovative assistive technology for independent and safe ageing at home: the
Smart Distress Monitor Project
The Smart Distress Monitor was a three-year Technology Strategy Board funded project
(2009-2011) designed to develop an “intelligent” activity monitoring system that will support
older and/or disabled people’s independence, safety and quality of life by charting their
activity/inactivity patterns in their living environments. What makes this system innovative from
other activity monitoring systems is the capability to ‘learn’ patterns of behaviour and identify,
over a period of time, deviations from the norm. These deviations might indicate the presence of
a problem and the necessity to intervene. The innovative aspects of the system consist therefore
in its capacity to go beyond mere safety and emergency issues (such as fall detection) by
constantly monitoring and recording people’s activity and inactivity within domestic
environments. By interpreting activity/inactivity patterns and comparing the persons’ routine
behaviours to their unusual ones, the infrared sensor will be able to detect the presence of both
health problems and well-being related issues, which might be indicated by behavioural
deviations from the norm (such as, for example, not entering the kitchen).
Being based on ‘thermal images’—which means that the neither the persons nor their
specific activity can be identifiedthe system ensures a complete respect of privacy. However,
at the same time, the system will provide an innovative and much richer source of data than
existing home monitoring systems relying on sensors such as door switches and conventional
movement detectors. Thus, for example, the system will also have the ability to detect if there
are other people in the house, to define the exact location of the person(s) within a specific room
and to recognize if the person is sitting or lying down. Moreover, users will not have to
personally wear or activate the system, which will increase its reliability and efficacy. With
regard to its look and design, it will be similar to a smoke detector (in size and appearance),
which will reduce the risk of potential stigmatisation connected to the use of assistive
technologies.
The design, development and implementation of the activity monitoring system has
adopted a person centred, participatory approach to ensure that the needs, perspectives and
preferences of older adults were taken into account throughout the process. The Smart Distress
Monitor project has been conducted in partnership between a UK academic institution,
represented by a research team of sociologists, an industrial partner, represented by a team of
engineers, and an advisory group of older people, whose role was to provide systematic input
into the research design and development, including data collection, analysis and dissemination.
The advisory group was composed of six older adults from different cultural, social and
occupational backgrounds and with varying levels of technological and gerontological
knowledge (see table 1).
The advisory group of older people shared a number of common objectives with the
academic and technical partners:
To identify the technological, psychological and social needs and preferences of older
people;
To define the user requirements for an activity monitoring system for use in private homes
and residential care settings;
To explore the ways in which an activity monitoring system impacts on the everyday lives
of older people in different settings;
To ensure that older people are central to the development of the monitoring system and
are positioned to advise the progress of the research.
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Table 1: Characteristics of the Advisory Group participants
Participant
Number
Age
Gender
Occupation
Motivation and
Knowledge
001
70
M
Ex-army officer
Present and past involvement in other medical
and community projects. Extremely motivated
and interested in care related technologies, also
because of his (precarious) health conditions.
No knowledge of care related technologies.
002
68
F
Retired
occupational
therapist
Highly knowledgeable of ageing process and
older adults related issues. Not informed (but
interested) about care related technologies.
003
65
M
Semi-retired
engineer
Highly knowledgeable of communication
technology. Less informed (but interested)
about care related technologies. Experiential
knowledge of care (caring for his mother-in-
law).
004
66
M
Former civil
servant
No previous knowledge of technology and
older adults related issues. Interested in the
issues of privacy and the policy implications of
care related technologies.
005
60
F
Academic
Academic and experiential knowledge of care
and older adults related issues. No knowledge
of (old and new) care related technologies.
006
67
F
City Council
research and
planning officer
(older people)
Highly knowledgeable and engaged with the
issues of healthy ageing and quality of life of
older adults in urban contexts. Less informed
about care related technologies.
Innovation of research methods and approaches: a user-driven ongoing process
The innovative methodological approach of the SDM project involved a number of
different research tools and methods:
Extensive literature reviews on relevant areas of study (including: ageing and ageism,
gerontology, gerontechnology, assistive technologies, telecare, participatory processes,
behavioural symptoms of diseases, etc.);
Secondary analysis of existing datasets from previous studies on ageing and technology;
Face-to-face, in-depth interviews with older people who live alone at home;
Telephone interviews with professional stakeholders and healthcare professionals;
Focus groups with older people and their formal and informal carers;
Workshops and quarterly meetings with the members of the advisory group;
Home trials of 4 to 6 months duration conducted on the prototype system;
Face-to-face interviews with home trial participants and their informal carers;
Home trial participants’ diaries.
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The first phase of data collection yielded a considerable amount of qualitative data and
resulted in the development of a series of use case scenarios which were designed to focus
attention on the needs, motivations and perspectives of older people together with the
potentialities and challenges of ambient assisted living technology. On the basis of these
qualitative data, a User Requirements Report fully grounded in older people’s experience of the
activity monitoring technology has been produced and a prototype infrared activity monitoring
system has been developed by the team of technologists.
At the time when this article was written, home trials and evaluation had been undertaken
to establish the capacity, potentialities and acceptability of the activity monitoring system within
domestic settings. Equipment had been installed in four private homes for approximately four to
six months. Data on the person’s activity within the house were collected via a number of
infrared sensors and analysed by the team of technologists. During the period of the home trials,
pre- and post-home trial interviews with participants and their informal carers were conducted
and participants were asked to keep a diary. The purpose of the diary was to provide a place for
them to record information about their daily living activities. The information provided was then
used to help improve the system and its response to events taking place in the home.
Participatory processes and/or user-driven approaches tend to include users (in this case,
older people) simply as ‘test subjects’ in the afterwards evaluation of already developed
technologies. The innovation of our more inclusive person-centred approach is the involvement
of older people throughout the entire research process. To provide a sense of agency and
equality in the research process, the members of the advisory group were considered as co-
researchers from the outset. As part of this participatory approach, older people have been
actively involved in determining their level of participation and their role as co-researchers. All
members of the advisory group agreed to review documents, relevant articles and provide input
into the decision-making process. In addition, some expressed their desire to be involved in the
data collection aspects of the research, creating the opportunity for advisory group members to
be directly involved in interviewing other older people and the potential to capture experiences
which might not otherwise have emerged.
During the first year of the project, the members of the advisory group who opted for a
more active involvement in the research process were provided with the necessary skills for
interviewing and co-conducting focus groups via training workshops facilitated by the academic
research team. The training workshop, together with guidelines on how to conduct semi-
structured, in-depth interviews, provided advisory group members with the basic skills necessary
to interview other older people within the community and to attend focus groups as co-
researchers. Although co-researchers felt that the training was stimulating and empowering, only
three members of the advisory group felt that they had the necessary skills and confidence to be
actively involved in data collection and analysis. The benefits (and/or the faults) of the
participatory process were evidenced in the constant communication and interaction between the
academic team and the advisory group of co-researchers undertaken throughout the project.
From the outset, the members of the advisory group were provided with a broad range of
possible forms of communication. This included: quarterly meetings with the research partners;
face-to-face, e-mail and telephone contacts; circulation and distribution of project related
reports, minutes and documents; and information related to assistive technology, academic
papers and journal articles, conference proceedings, seminars and outputs from other relevant
events. These forms of communication were consolidated throughout the research and
represented the primary means for transferring and sharing information between the academic
team and the advisory group of older people. The members of the advisory group were
encouraged to express and share their thoughts, feelings and opinions on events, meetings,
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research progress, status reports, latest news on assistive technologies, relevant websites,
forthcoming conferences, articles, and to provide the academic team with regular feedback.
This approach facilitated the development of a continuous two-way dialogue between the
research team and the advisory group of older people, a constant flow of information that was
capitalised upon by the research team to reshape the scope of the research and refine its tools
and methods. This process was enlightening for the research team, revealing issues that would
not otherwise have emerged, as the advisory group members were drawing upon their own lived
experiences. Their involvement provided crucial and critical insight on the potential impact of
home monitoring technology on people’s habits, behaviours and feelings, on people’s sense of
privacy, autonomy, safety and independence and finally on issues concerning personal identity,
sense of belonging, the ageing process and symbolic meanings of home.
In light of this continuous input, elements of both the sociological research process and
the technological development have been re-shaped or amended and the advisory group
members reported that they have felt empowered, more knowledgeable about activity
monitoring technology and provided with the platform to have their voices heard and valued.
However, the user-driven, participatory approach we adopted also presented some challenges,
the management of which was not always successful. Efforts to address such challenges are
described in the next section.
Charting the paths towards authentic participatory research
Participatory research is a continuous interactive process that must be constantly renewed
and renegotiated. Undertaking participatory research requires the academic team to consider the
requirements of all partners, co-researchers and stakeholders while at the same time maintaining
high standards of research. This often requires working with each partner individually to re-
assert the benefits of undertaking participatory approach. Indeed, some of the main challenges
we encountered in this project have been maintaining high levels of collaboration, motivation
and enthusiasm of the co-researchers while simultaneously facilitating the dialogue between the
different instances of the advisory group of older people (co-researchers) and the team of
technologists.
Terms of reference were agreed with all the research partners when the research started.
This stipulated the purpose and structure of the advisory group and described what would be
expected from the group members in terms of their role and how it could change. The academic
research team felt it was important not to place unfair expectations on the advisory group
members and thus their expected contribution was not specified, leaving it up to the individual
themselves to make decisions on the extent to which they wished to be involved in the project.
For example, the members of the advisory group were expected to attend quarterly project
meetings, where possible, but no numbers were placed on how many they should attend or how
they were expected to be involved. Moreover, according to the terms of reference, they were
expected to review and provide feedback on project documentation, without specifying how
many or the type of documents they would be expected to review.
At the beginning of the project, it became apparent that the team of technologists were
not necessarily enthusiastic, not with the same level of intensity at least, to involve the advisory
group of older people in each and every stage of the project. On the other hand, the members of
the advisory group, were eager to be involved in different levels of participation, i.e. attending
meetings, reviewing documentation, engaging in data collection and analysis, etc., and thus
flexible terms of reference provided a basic framework in terms of role expectations whilst
allowing the individual themselves to determine and shape their level of involvement in the
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research. There is a fine line between ensuring that older people make a positive contribution
whilst sustaining that effort over the course of the research.
A further important issue regarded the different work ethos, cultures and practices of the
research partners involved. Whereas the academic research team had a consolidated tradition of
conducting participatory research and a solid and grounded understanding of the ways in which
participatory research must be conducted and who it should benefit, for the technology partners,
the concept of participatory research was relatively unknown and alien to their traditional ways
of thinking and working. As a consequence, they were unfamiliar with the dynamics involved in
participatory research, such as challenging hierarchical power relationships, adopting a flexible,
iterative approach to the design process and presenting complex information to a lay audience.
In such a context, the academic research team was required to adopt a ‘bridging’ role to mediate
between partners and ensure an authentic participatory process, which means emphasising the
importance of participation as a democratic form of inquiry and grounding the research outputs
in the experiential perspectives of older people themselves.
Upon reflection, more work could have been done across the partnership to develop
mutual understandings of the benefits of involving older people in research and the conditions
that need to be provided to ensure that their voices are heard. Early collaborative workshops
could have been undertaken with the advisory group and the team of technologists aimed at
facilitating exchange of knowledge and relationship-building. These workshops would have
provided a platform for both older people and technical experts to present their experiences,
discuss their expectations from the project and engage in exercises to establish closer
relationships. Moreover, there was an implicit expectation from the academic team that the team
of engineers would have adopted the philosophy of person-centred research as the project
developed. Training sessions could have been held with the project partners on the theoretical,
ethical and practical aspects of person-centred, participatory research. This would have provided
the research partners with a more realistic and pragmatic understanding of the principles of
participatory research.
Whilst the two partnerships taken separatelybetween the academic team and the
advisory group of older people, on one hand, and between the academic team and the technology
team, on the otherworked relatively well, engaging all three partners in the research process
has been more challenging. Only a limited number of all the quarterly meetings that took place
during the research included the presence of all three partner teams. Here, geographical distance
played a role in preventing the opportunity to discuss the research progress and share ideas in
real time. Whilst the academic team and the advisory group were both located in the North-
West, the technology team was located in Central England. This geographical distance
represented an obstacle to physical face-to-face meetings between all research partners. As a
result, there was little opportunity for common discussion and interaction across the academic,
technical and advisory group and the development of an effective feedback process was not
always easy to facilitate.
One concern of the academic team related to how the partners viewed their roles within
the project and if those perspectives were effectively understood and used to shape the project.
A key component of participatory research is including, acknowledging and making productive
use of the inputs of all participants. As the project developed, the comments and suggestions of
the advisory group were incorporated into the research, with the expectation that the final
outcome will be reflective of their experiences, values and needs. Here, there needs to be a
recognition and clear communication of the trade-off, between the technical capabilities of the
system (i.e. what cannot be designed) and the need to incorporate the user requirements of the
system (i.e. what can be designed). This is as much about the users understanding the technical
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capabilities and limitations, as the need to ensure that user requirements are translated into the
system design. Failure to consider this may well result in tokenistic and disingenuous
participation and a system that is divorced from the everyday lives of older people. Our
experiences so far suggest there are a number of mediation and facilitating skills that the social
scientist is required to apply to facilitate successful partnership-working:
Active listening: Listening and understanding the experiences, concerns and different
expectations of partners regarding how the partnership is working and using this to bring
about positive change.
Shared dialogue: Ensuring that channels of communication are opened up across all
partners and that information is communicated to each member.
Critical self-awareness: Ability to reflect critically on our own role within person-
centred research approaches is important for facilitating change and maintaining
flexibility within such approaches.
Conflict resolution: Partnerships can be fractious and mediation is often required to
successfully resolve conflicts and tensions (or simply misinterpretations) when they
arise.
Although not all the participatory interactions between the three research partners have
been as successful and productive as we hoped, what we learned from this original and unique
collaboration between an industrial partner, an academic team of sociologists and an advisory
group of older people is useful for other projects adopting person-centred approaches to the
development of assistive technology. In the following section some suggestions are provided for
future user-driven research and strategies on how to develop and implement innovative and
more inclusive participatory research approaches are discussed.
Involving older people in the development of Innovative Assistive Technology: suggested
action points
Involving older people in the research is a complex and difficult process to manage.
Providing older participants with freedom and choice within the research process requires
effective monitoring and constant negotiation. Enabling choice requires giving older people the
opportunities to be (actively) engaged in the research in a variety of ways. In the project here
described, much attention was paid to ensuring a meaningful and sustainable engagement. As an
academic research team, we have been confronted with the need to ensure that the level of
motivation and involvement of older participants could be maintained throughout the research
process. Yet, this is difficult to achieve as it is not based on any fixed and clear-cut rules and
requires a process of continuous negotiation and reflective analyses. The following action points
outline how older people’s involvement in the research was approached and constitute
guidelines for future user-driven, participatory research:
Early relationship-building: Developing closer and more informal relationships with the
members of the advisory group beyond the research context was fundamental in
cultivating a genuine partnership between the research team and the older people’s
advisory group based upon respect, esteem and trust and valuing the contributions of
each individual. This equality and reciprocity allowed us to challenge the traditional
researcher-subject hierarchical relationship that often exists, so that the participants could
feel a sense of freedom, openness and empowerment in the research process.
The Innovation Journal: The Public Sector Innovation Journal, 19(1), 2013, article 6.
12
Ongoing relationship-building: Relationships between the various project participants
have been developed via a number of different means, such as face-to-face quarterly
meetings, participation in care related technology events/seminars/conferences, and other
informal interactions between the researcher and the members of the advisory group,
including: conversations concerning personal life events; working lunches; greeting
messages and postcards for major holidays, festivals and observances; and sharing
interests, ideas and concerns within and outside the research context.
Clear and multiple forms of two-way communication: The prevalent form of
communication with the members of the advisory group was via e-mail or telephone, or a
combination of the two. Researchers need to be flexible and able to opt for the form of
communication that best accommodates the research partners. This is important for
communicating everyday information. For example, initial attempts to communicate only
via e-mail prevented one of the older co-researchers from receiving information when
their internet malfunctioned.
Transparent and constant flow of information: Up-to-date information about the progress
of the research needs to circulate regularly (at least every two weeks) to ensure that the
members of the advisory group feel a part of the research process, whilst not too often
that participants experience information overload and disengage from the research
process. Significant amounts of time were spent by the academic team ensuring that clear
forms of communication and feedback mechanisms were developed and adjusted to the
changing needs and phases of the research.
Tailored and accessible information: Information which is transmitted across the
different research partners should be easily interpretable. Specialist/scientific jargon
cannot always be avoided, particularly in the area if innovation technology. However,
this should not undermine the ability of co-researchers to understand complex
information. For example, both the academic and the technology team were encouraged
to provide lay summaries of the technical aspects of the Smart Distress Monitor project
(for fear that they would be misunderstood). Nonetheless, a number of co-researchers in
the advisory group enjoyed reviewing academic journal articles in the areas of assistive
technology and gerontology and demonstrated high levels of enthusiasm to understand
the functional aspects of the SDM system.
Flexible research process: Contrary to common belief, older people have often quite
hectic, busy, mutable and unpredictable lives, for example, when acting as family carers,
attending healthcare appointments etc. The successful attendance at meetings for the
advisory group of older people was influenced by their specific individual and familial
circumstances at the time. This aspect recognises people as emotional beings and that
emotional responses to participation need to be considered and managed (Hochschild,
1979). Any academic team involved in participatory research projects should adopt a
flexible approach to accommodate the feelings, needs and motivations of the co-
researchers.
Flexible research partners: Undertaking person-centred research also raises
contradictions when involving diverse research partners: academics, older people and a
team of technologists. Emerging findings may not be consistent with the original
hypotheses or satisfy the different expectations of the different research partners. This
(normal) process of adjustment and negotiation can be more complex and difficult to
attain within funded research or research which involves research teams who have
different and often competing research orientations (for example, the market-oriented
The Innovation Journal: The Public Sector Innovation Journal, 19(1), 2013, article 6.
13
nature of the industrial partner’s approach to the research was quite obvious and
explicit). However, being aware of and managing the different expectations of the
various stakeholders is important for ensuring their engagement as the project progresses
and the complete respect of ethical issues at stake.
Resource allocation: The realisation of a successful and authentic participatory research
project can be limited by resource constraints. Budget and time constraints all limit the
extent to which relationship building, reflection and negotiation can be achieved.
Resources should be adequately assessed and evaluated from the outset and built into the
development of the research proposal.
Real-time evaluation: It is important to evaluate the participatory process in real time and
as the work is ongoing in order to identify and resolve any conflict, concern and
challenge as they arise. In addition, identifying and documenting the positive benefits of
engagement can assist in identifying those elements of participatory work that need to be
retained.
Sustaining older peoples involvement in research needs to be considered beyond the end
of the project. Working towards an agreed exit strategy for older people constitutes a thoughtful
and sensitive way of gradual separation. This might include keeping participants updated on
post-project developments, offering opportunities for attending or presenting at conferences and
workshops, co-authoring publications and being actively involved in proposal development and
new research projects. In the research presented here, the advisory group of older people opted
to maintain contact with the academic team and to provide input into further research. ‘Keeping
in touch’ is an important way to acknowledge and express gratitude for their commitment and
contributions.
Concluding remarks: a successful innovative research approach?
The development and promotion of innovative (and effective) research partnerships
require highly developed mediation and facilitating skills and critical reflection throughout the
entire research process. This involves documenting the benefits of user-centred, participatory
research process as well as their challenges, problems and pitfalls. This also requires being able
to respond and adjust our research strategies ‘in real time,’ as the project progresses. This article
describes our contextual experience of doing participatory research, engaging older people in
the design, implementation and development of Innovative Assistive Technology (a Smart
Activity Monitoring system). It provides practical guidelines for future user-driven, participatory
research involving older adults in the design, development and implementation of assistive
technologies.
While current literature on older people’s participation in research is growing, this tends
to happen after a project closure so that learning rarely feeds forward into more productive
partnerships. The reflective accounts presented in this article were conducted mid-way through
the research, enabling all research partners to meet the challenges identified and work together
towards timely adjustments as the project progressed and more successful outcomes at project
end. As such, the discussion and the suggestions here provided contribute to the emerging
debate on both innovative participatory research methods and the development of innovative
assistive technologies.
Investing in research with older people requires high levels of flexibility and adaptability
when negotiating significant methodological challenges and reflecting upon older people’s real
participation in the research. This latter becomes even more complex and difficult when there
are other partners and funding bodies involved in the process. Developing mutual understanding
The Innovation Journal: The Public Sector Innovation Journal, 19(1), 2013, article 6.
14
of the motivations involved in participatory research and translating these motivations amongst
all project partners is crucial to achieving effective results. This is important if participatory
research is to be conducted alongside older people (producing empowering outcomes) rather
than on them (producing potentially exploitative outcomes). In order to be effective and
ethically appropriate, the research process must be inclusive, purposeful and productive for all
the research partners.
The social scientist cannot gain insights on older people’s perspectives without
developing authentic research partnerships that may be beneficial to all social actors involved,
no matter how difficult and complex negotiating and maintaining such partnerships are.
Participatory research is a constant, endless, fluid process which must be reflected upon
throughout and beyond the timescales of the research in order to improve practice. Engaging
older people as equal partners in the research and making their voices heard as part of the
process is a practice which requires the management of competing interests but it is a practice
that needs to be pursued if we want to achieve authentically successful research outcomes.
As highlighted by several reviews of user involvement (Fudge, Wolfe and McKevitt,
2007; Oliver et al., 2004; Boote, Telford and Cooper, 2002) more case studies and examples are
needed on constant reflexive analyses which feed forward into enhanced experiences of research
partnership as the project develops and which evaluate the benefits of person-centred approaches
in terms of research process and outcome, rather than merely those for the research participants
and partners. Our contribution shows that non-tokenistic inclusion of older adults in the design
and development of new care related technologies can be effective for both the older adult
communities, by ensuring that such technologies fit into the everyday life of older people and
they are accessible, functional and aim to improve their independence and quality of life. It is
only by involving older people as co-researchers in the design and development of new assistive
technologies that we can attain successful research outcomes and creative forms of reciprocal
inspiration; an inspiration, we hope, that can be reflected in the design of future research.
About the authors:
Alessandro Pratesi is a Lecturer at the University of Chester (UK), where he teaches Sociology at the
Department of Social Studies and Counselling. His research interests include: Family Care; Care related
technologies; the Sociology of Emotions; Relationships, Intimacies and Families; and Qualitative
Methods. Before joining the University of Chester, Alessandro worked as a Researcher on several UK
and international research projects. He developed his research interests and expertise in Italy, at the
University of Florence, in France, at the École de Hautes Études en Sciences Sociales (EHESS) and in
the USA, at the University of Pennsylvania (UPENN).
Email: a.pratesi@chester.ac.uk
Judith Sixsmith is Professor in Public Health Improvement and Implementation at the University of
Northampton (UK). Her research interests and expertise include: Health and Wellbeing; Care related
technologies; Ageing: Positive ageing, ageing and technology, Dementia care, Lifecourse transitions.
Email: Judith.Sixsmith@northampton.ac.uk
Ryan Woolrych is Research Associate at Simon Fraser University (SFU Gerontology Research Centre),
Vancouver, BC, Canada. Ryan has framed much of his research within a participative framework,
engaging older people as co-researchers in the data collection, analysis and dissemination phases of
research. Ryan has been involved in a number of funded projects in the area of gerontechnology,
specifically the application, development and evaluation of technology to support older adults at home.
He is currently secretary-general of the International Society for Gerontechnology.
Email: rwoolryc@sfu.ca
The Innovation Journal: The Public Sector Innovation Journal, 19(1), 2013, article 6.
15
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