A House of Lords Science and Technology Select Committee Inquiry: Scientific Aspects of Ageing
Click for details of the Inquiry
A Consensus Statement: The experience of the EQUAL Network has shown quite conclusively that the research community, government, charities, user representatives, industry, funding agencies and other parties interested in improving the quality of life of older and disabled people are well served by the design and engineering orientation of the EPSRC EQUAL Initiative, by EQUAL Network workshops and representations to policy makers. Network workshops provide settings where leading researchers, can interact directly with practitioners, users and their representatives and with service providers. These provide an important opportunity for information exchange, and for building confidence, support, and optimism in the contribution to be made by better design and engineering practice. Whilst workshops provide an opportunity to learn about the latest developments and completed research they also provide the starting place for new developments and lines of enquiries. They differ substantially from formal conferences, in that presenters and participants are more accessible, and the Workshops are more inclusive, providing opportunities for those who for whatever reasons are prevented from attending major conferences to interact with key players involved with ageing and disability-research and its application. The grass-roots bottom-up user-end approach to research, implicitly a social rather than medical or engineering model of research, adopted by the Network has revealed an enthusiasm, excitement and commitment ageing and disability research which is unlikely to be achieved through other means.
Evidence
for the Inquiry: Drawing on the experience of members of the Network the
Director has submitted evidence to the Inquiry on behalf of members of the EQUAL
community and others who are engaged in design and engineering orientated
ageing-related research.
Inquiry into Scientific
Aspects of Ageing
Memorandum submitted by
Professor Peter Lansley
Introduction
Peter Lansley is Professor of Construction Management
at the University of Reading. He has been closely involved with the development
of the EPSRC EQUAL (Extending Quality Life) Initiative. He has chaired some of
its awards panels and frequently acts as spokesperson for the Initiative. He is
Director of the EQUAL Research Network which is concerned with promoting the
contribution to improving the independence and quality of life of older people
of design and engineering orientated interdisciplinary research.
The memorandum reviews
some the features of the EQUAL Initiative and the organisation of research at
national level and it offers some proposals for the future. It is informed by
the experiences of the Network and the views of its members and supporters which
include professionals, practitioners and older and disabled people as well as
researchers. However this not an official account of the EQUAL Initiative.
Rather it represents the perspective of those who have been closely involved
with ensuring that it has had a clear focus on meeting the needs of older
people.
The Value of Design,
Engineering and Technology Research
Recent research provides valuable support for the case
that better design and application of both conventional and innovative
technology can make a major contribution to improving the independence and
quality of life of older people. The creation of more comfortable environments
and of aids to living and recovery are valid areas for research.
Such research has been
supported by a number of charities, some of which have a long-term commitment to
improving living conditions for older and disabled people (for example, the
Joseph Rowntree Foundation programme of work centred on Lifetime Homes, the work
of the Thomas Pocklington Trust focused on visual impairment, and that of the
RNIB in many areas including the design of the home). It has also received
significant support from EPSRC, principally through its EQUAL Inititative. The
success of these programmes gives a clear indication of both the positive
outcomes which can be achieved and useful guidance on how to organise research
to achieve maximum impact.
Given the range and magnitude
of the issues faced by older and disabled people who may benefit from research
there has been insufficient investment. However, since the research base is
small and capacity for research is limited there is a need to consider how best
to develop the research base and more generally how to organise ageing research,
especially in the light of disappointing progress over the last three years.
The EPSRC EQUAL
Initiative
EPSRC launched its EQUAL Initiative in 1997. This was
focused on enhancing the independence and quality of life of older and disabled
people through a programme of design, engineering and physical science
orientated interdisciplinary research involving social, medical and health
scientists as well as design, engineering and technology scientists. The
programme required collaboration with intermediate organisations, such as
housing providers, health and social services organisations, transport
companies, and charities, and the direct involvement of older and disabled
people in the individual projects constituting the programme. EQUAL has
supported 39 projects ranging from very small one year feasibility studies with
a value of £30,000, to large three year consortia projects with an award value
of £650,000.
Most projects have
considered how the environments of older and disabled people, and in some cases
their carers, can be designed or modified to enhance well-being, independence
and quality of life, but others have considered the enhancement of approaches to
rehabilitation following illness or accident so as to enable the rapid return to
home and, as far as possible, to normal daily routines. Although there has been
a particular interest in the home environment including the devices and products
used in the home, there has also been concern for care settings, public access
buildings, urban environments and transport systems. Some projects have
considered general aspects of ageing and disability whilst others have focused
on specific aspects of physical impairment, sensory impairment (particularly
vision and hearing), and cognitive impairment (especially dementia and stroke).
All projects have entailed
the development of a detailed understanding of the way in which users interact
with their environments, and their priorities and preferences. This has been a
very necessary precursor to the gathering of data and creation of conceptual and
operational models to enhance design information, improved design methodologies,
better assistive technologies and innovative rehabilitation systems.
The EQUAL Projects
Those projects concerned with the home fall into two
main categories. Building on the widespread success of community alarms and
related systems, several projects have focused on the development of the smart
home, advanced intelligent sensor systems, telecare and telemedicine. Other
projects have been concerned with developing design guidance for new homes and
yet others with the challenge of adapting existing homes so that older people
can remain in them despite considerable infirmity. These have blended the
perspectives of sociology, health care, design, technology and economics to
provide important and compelling accounts of the options for policy makers,
housing, health and social services organisations and for older people
themselves. This work is able to make a sound economic as well as a quality of
life case for the substitution of adaptations and assistive technology for
traditional forms of care services. In some situations the savings could be
considerable. A large proportion of the projects in all fields have a strong
business or economic dimension reflecting their concern to meet the needs of
government, other organisations and society to identify cost-effective
approaches to enhancing independence and quality of life.
Projects concerned
with infrastructure, transport systems and non-domestic buildings form two
groups. Firstly, there have been those concerned with improving accessibility to
buildings, transport systems and more generally the urban environment through
better design and, secondly, projects concerned with developing navigation tools
for people with specific impairments. Here again the integration of a range of
disciplinary perspectives and exploitation of new technology have generated new
practices, often with the potential to couple significantly improved
independence with major cost savings.
The projects concerned with
sensory and cognitive impairment have generated unique information about the
needs of specific groups of people which is invaluable to designers, who
previously have had little design guidance, and for health workers for example,
Occupational Therapists, who have to match the needs of individuals with
recommendations about how their homes might be adapted.
Research with dementia patients is leading to systems which can afford
them a greater degree of independence and confidence for longer whilst also
supporting their carers. New technology has a role to play here but so too do
new approaches to the design of care facilities. The work with stroke patients
will contribute to improved recovery times and will enable some rehabilitation
therapies to be home rather than hospital-based.
Inclusive design projects
consider a wide range of conditions from normal ageing to ageing with multiple
impairments. These are producing design data sets, advice, methodologies and
technologies for design which are immensely attractive in terms of both
innovative design processes and the resulting environments and products. Here
there is much evidence to support the business and economic case for inclusive
design especially when considering older people as consumers of products and
services.
Outcomes
Just over half of the projects supported by the EPSRC EQUAL Initiative have been
completed. The reminder will do so in the next two years. Many of their findings
have been adopted by practitioners and policy makers, often within two years of
project completion, and sometimes before they have been completed.
Because the projects have involved collaboration with service providers
and the involvement of older and disabled people, developments arising from the
projects have been rapidly evaluated and refined. This has facilitated the
further articulation of outcomes, especially where projects have produced state
of the art and best practice guides, tool kits for professionals, demonstration
systems, and devices and systems ready for application. Some of the outcomes
have been of particular value to those who commission buildings, infrastructure
and products, and to architects and designers who have to ensure that their
designs are more inclusive of the needs of older and disabled people, and more
generally the ageing population.
The research outcomes
have also influenced, for example, the development of British Standards and
building regulations, and the policies, practices and general outlook of key
individuals within government organisations, such as the Housing Corporation,
the Department for Transport, and the Disability Rights Commission, even where
they have called into question current policies and recommendations in relation
to older people. At a more general level the findings have influenced
expectations about how the built environment and everyday consumer products
could and should be designed to accommodate the needs of older and disabled
people. Similar comments apply to the findings arising from the rehabilitation
projects. In particular these have raised expectations of what might be achieved
through engineering and technology orientated research.
In addition the EQUAL
Initiative has stimulated an enthusiasm amongst scientists from quite different
fields for working closely together, and has highlighted the need to find
further ways of working across scientific boundaries. For example, there is a
need to understand in much more detail the implications of the biology of
ageing, for instance, the variation in human biological functions, especially
between ethnic groups. This is required not just to help designers accommodate
particular impairments but also to aid health practitioners in the community to
detect the onset of disabling conditions and to take appropriate action to
arrest the rate of decline.
To summarise, the EQUAL
Initiative has been particularly effective at identifying and supporting
projects which, within a short space of time, have produced significant outputs
for improving the quality of life older and disabled people. Some of these
outputs have already produced direct benefits. Others, through informing, for
example, official standards and regulations, design procedures, and professional
practice, will have a long term and systemic effect on the design and management
of the built environment and consumer products, and on approaches to
rehabilitation following illness or accident. Whilst modest, the approach taken
by EPSRC to building research capacity and facilitating ageing research should
be commended.
Other Initiatives
The EQUAL Initiative has run in parallel with other
similar ageing related research programmes supported by large and small
charities, housing and other organisations. Because some of these organisations
are in a good position to ensure the application of their work, and many do so
very successfully, they can create important expectations and standards of all
research. A recent example is work carried out by RNIB Cymru and JMU Access
Partnership on the design of housing to meet the needs of people with sight loss
which is being incorporated into the requirements of grant funded Registered
Social Landlords when they are building or adapting homes.
However, much of this
other work is carried out in isolation and is rather ad hoc. For example, many
organisations are presently involved with the development and application of
home-based technologies in recognition of a major challenge for the quality of
life of older people being that of supporting people in their own homes,
especially people with dementia. There is a great deal of work needed here in
bringing together these efforts if the aim is to develop cost-effective
integrated services with good distribution networks, skilled installation
personnel, and managers who are aware of the capabilities, cost effectiveness
and limitation of new technologies.
Building a Community
In 1997 although there was a surprising number of
university based research designers and engineers with some experience of
ageing-related research, often gained through small-scale projects with
charities or undertaken out of personal interest, there were very few
experienced researchers in the areas to be covered by EQUAL.
However, the Initiative was successful in attracting those with
experience, as well as many newcomers from a broad range of disciplines within
the physical, social, health and medical sciences. Probably because so many were
new to the area, they were prepared for and relatively untroubled by many of the
challenges of interdisciplinary user-orientated work.
So, they quickly established new research methodologies which were to
contribute to a new style of applied science. These new approaches deserve
greater recognition for their effectiveness in the skilled business of involving
users as active participants in the research process.
Initially most of the
EQUAL researchers were operating in isolation from each other and within
university departments which did not have a strong interest in ageing or
disability issues. There was a need to
build the community and to keep the researchers close to professionals and
practitioners, and to older and disabled people, especially following completion
of their projects. As a consequence between 2001 and 2004 EPSRC funded the EQUAL
Research Network, which was to be organised and managed by the research
community. The activities of the Network have included twelve national workshops
at different locations throughout the country, the development of a
comprehensive website www.equal.ac.uk,
widespread publicity about the contribution of design and engineering research,
and advocacy to policy makers especially in government.
Far
from being an activity just for researchers, the Network has attracted strong
support from professionals and service providers as well as from older and
disabled people. They have valued its commitment to encouraging an urgent and
pragmatic interest in meeting the needs of older and disabled people, its role
as a source of information about the latest research developments, the
opportunities it provides to meet researchers and to discuss their work, and its
advocacy of the benefits of research based developments in support of older and
disabled people. Intermediaries and older and disabled people account for 60% of
those attending workshops and nearly 70% of the members and supporters of the
Network.
The
Organisation of Research
The EQUAL Initiative has been the major force
behind the development of a committed, albeit small, research community and an
enthusiastic body of supporters, of professionals and practitioners as well as
older and disabled people. It has achieved this through several means but
principally through involving older and disabled people and their
representatives in every aspect of its endeavours. In the early years EPSRC
entered into frequent and varied discussions with older and disabled people and
their representatives about needs and priorities and with researchers about how
those needs and priorities could be met through exploiting the capabilities of
science. Although modest, the initial rounds of funding reflected those
priorities. The frequent calls attracted proposals grounded in both a sound
understanding of needs and of what science could achieve and subsequently many
of the projects have had useful outcomes. In turn this steady commitment to
ageing research fostered a clear link between consultation and involvement of
stakeholders, support for research and valuable outcomes.
However this approach
was no longer possible following the introduction in 2001 of mechanisms to
coordinate ageing research across research councils and other funding bodies.
Although these national coordination mechanisms have involved representatives of
major organisations with an interest in the needs of older people and key
researchers, they have not engaged directly with the broad spread of
stakeholders in ageing research especially older people, the research community
and small charities. Thus they are unlikely to be fully informed about the needs
and aspirations of older people or the capability of the contemporary and
emerging science base. For those already committed to design and engineering
orientated ageing research the agenda for the New Dynamics of Ageing Programme,
which has emerged from three years of discussion through these national
mechanisms, is rather conservative, especially in relation to
interdisciplinarity and user involvement. In turn it has little to appeal to
biological and medical researchers. As a result of this disappointing attempt to
coordinate ageing research there is a genuine fear that the momentum created
through the EPSRC EQUAL Initiative and the nation’s capacity for ageing
research will be lost, as will the rapport created between researchers and
end-users.
A Proposal
As a consequence of these concerns the research community, with the support of
other stakeholders, has put forward a proposal (Strategic Promotion of Ageing
Research Capacity - SPARC), firstly, to build capacity for ageing research
through a pump-priming scheme of small awards to support newcomers, and secondly
to develop the networking activities established by the EQUAL Network to support
biological as well as design and engineering research ageing research. This
proposal has attracted considerable interest from both the engineering and
biological communities and has been welcomed by EPSRC and BBSRC, although it has
yet to be finally approved. It will, however, be a small programme. It will not
be comparable to a single or cross-research council programme.
The Future
Organisation of Research
The current approach to coordinating ageing research
at a national level is inappropriate. Firstly, there is little existing research
to coordinate. Secondly, as studies of innovation have made patently clear,
attempts to coordinate future activities within emerging fields soon
disintegrate through the gate-keeping of creative ideas which do not fit agreed
agendas, thus quickly stifling that which it is intended to facilitate.
Ageing research is too
new an area to require a significant degree of coordination. Rather, it needs
encouragement through rich and varied opportunities for researchers, service
providers and older people to interact and to learn from each other so that
those ideas which come forward for support imaginatively exploit the
capabilities of science and have the potential for contributing to the
enhancement of the lives of older people. The experience of the EQUAL Initiative
has been that bottom-up stimulation works well and generates exciting and
surprisingly worthwhile outcomes.
In the future much more would
be achieved through: encouraging more champions for ageing research within the
distinct research communities, creating a stronger public face for ageing
research, and ensuring a steady trickle of funding underpinned by opportunities
for cross-fertilisation and networking with all stakeholders.
28th September
2004