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 Breast cancer is the most common cause
of death from cancer in women in the UK , resulting in
12,500 deaths per year in England and Wales (Haward et al
1999). In addition, the age standardised mortality in the
home countries is among the highest in the world (McPherson
et al 1995), and has a lower five year survival rate than
other European countries or the USA (Richards et al 1994).
Moreover, treatments for breast cancer are complex and often
toxic in the short and long term for some patients, with the
consequence that the burden of the disease is very great
even for those patients who are considered to have been
cured as a result (Cancer Working Group 1999).
A strategic report for the Department of Health lists as one
of five highest priorities ?The evaluation of the cancer
national service framework (Calman/Hine) to develop methods
that can inform the implementation and development of this
framework and be used more generally to evaluate changes in
the configuration of service in the NHS? (Cancer Working
Group 1999). In particular, it notes that ?the involvement
of patients in decisions about individual care and policies
- including R&D priorities - is widely advocated but little
information exists about its impact or value? (Cancer
Working Group 1999) and advocates, among others, priority
area ?the most cost effective way to provide information to
meet the needs of patients, their families, healthcare
professionals and the public?. A recent commissioned report
in this priority area (Effective Health Care 2000) concludes
that:
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Current NHS policy emphasises the
need for good communication between health professional
and patients
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The most common complaints made by
people with cancer are about poor communication and
inadequate information.
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Patients cannot express informed
preferences about their care, choose to be involved in
decision-making, or indeed choose not to participate,
unless they are given sufficient and appropriate
information.
These conclusions dovetail with the
need for better health outcome indicators (Haward et al
1999), fitting into a proposed matrix of indicators that
includes among the key perspectives, that of the
patient, and among the aims of health intervention, to
?...maintain well-being during and following treatment
for breast cancer?, through the provision of information
that is ?full, clear and objective...? (Haward et al
1999). While making their recommendations about
candidate indicators, Haward et al (1999) noted that
suitable methods to evaluate patient satisfaction with
the care they receive, have not been developed for use
in a routine setting.
We propose adopting a systematic and
integrated approach to the design and provision of
information to clinical oncologists and breast cancer
patients in a routine clinical environment. The basis of the
proposal is to pool the required multidisciplinary expertise
to design two specific information support, software tools
that link to the prognostic information available about the
individual patient, and present this in a user-centered,
flexible way, so as to maximise the utility to the
oncologist and to the patient. This requires skills in
intelligent systems, bioinformatics and interface design.
The eventual systems follow the main requirements of the
Medical Devices Directives, in being design assured by use
of best practice in statistical, neural and expert system
inference, together with risk assessment, to verify the
inferences made against clinical knowledge and also to
assure the integration of the software system as a whole,
and finally an evidence-based evaluation of effectiveness to
the two types of users. This approach complies with a solid
framework for the development and evaluation of complex
interventions to improve medical care (http://www.mrc.ac.uk/complex_packages.html).
Such an approach, unlike traditional
decision-making techniques including multi-criterion, will
provide breast cancer clinicians and patients with a
high-assurance, decision support that is adaptive to their
decision practices yet allowing for evolutions of decision
models, decision resources (data) and other users concerns.
This novel approach will provide important insight into the
development of an integrated decision support infrastructure
for high-assurance decision activities.
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Project Title
Towards a Disciplined Approach to
Integrating Decision-Support Systems for Breast Cancer Care
Activities
Sponsors
Polaris House,
North Star Avenue,
Swindon. SN2 1ET
Partners
Wilmslow Road,
Manchester, M20 4BX.
Clatterbridge Road
Bebington
Wirral. CH63 4JY
School of Computing and Mathematical Sciences
Liverpool John Moores University
James Parsons Building
Byrom Street
Liverpool
L3 3AF.
Tel (+44) 1524 593801
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