Transforming care for cancer survivors
Submitting InstitutionUniversity of Southampton
Unit of AssessmentAllied Health Professions, Dentistry, Nursing and Pharmacy
Summary Impact TypePolitical
Research Subject Area(s)
Medical and Health Sciences: Public Health and Health Services
Summary of the impact
There are currently 2 million cancer survivors in the UK. This is
predicted to become 6 million by 2050 — by which time more than 50% of the
UK population are expected to have experienced a cancer diagnosis. Our
research and expertise have been central to the creation of the Department
of Health's National Cancer Survivorship Initiative (NCSI), and framing
policy more widely to respond to this challenge. It has provided evidence
of the wide-ranging impact of the disease following cancer treatment, and
has led to new models of cancer aftercare being implemented across the UK
and internationally. Our research has linked directly to policy and
practice through Professor Jessica Corner's membership of the NCSI
Steering Group, as co-chair of the Department of Health's Cancer Patient
Experience Advisory Group, and through our partnership with Macmillan
The Macmillan Survivorship Research Group at the University of
Southampton is led by Dr Claire Foster, with Professor Jessica Corner. It
plays a leading role in the national and international movement to enhance
care for cancer survivors. It is the only group of its kind in the UK and
is uniquely placed for national and international impact. Our research
played a major role in making the case for the Department of Health
(DH) National Cancer Survivorship Initiative (NCSI), and in
underpinning its continuing work in improving the health and well-being of
The Macmillan Survivorship Research Group focuses on advancing
understanding of the health outcomes and experiences of cancer survivors.
Until recently this population has been neglected and their needs poorly
understood. We discovered that cancer survivors are often unprepared for
the continuing impact of cancer on their lives, and health professionals
are unaware of the problems they experience. We showed that healthcare
services need to adapt to this rapidly growing population, and we
identified and developed effective models of aftercare to enhance quality
of life and make better use of healthcare resources.
The Macmillan Listening Study [3.1] used ground breaking
participatory research methods to work with and actively consult people
affected by cancer across the UK. We collaborated with cancer service
users trained as co-researchers — with a strong focus on including people
from under-represented groups — to show that people with cancer ranked the
wide-ranging impact of cancer on everyday life and the need for support to
self-manage as their highest priorities. They ranked these higher than
research into new treatments or basic scientific understanding of cancer.
From this Dr Claire Foster and Dr Deborah Fenlon developed a model of
recovery of health and well-being following primary cancer treatment
[3.3]. This study also demonstrated that patients may experience low
confidence following treatment and find it difficult to self-manage the
impact of cancer and its treatment without support. As a result of this
work, focus on recovery is now incorporated into NCSI recommendations.
We led the analysis of national survey data comparing cancer survivors'
health outcomes with healthy individuals and those with long-term
conditions (initial data published in 2008; detailed analyses published
2011). To reinforce impact with continuing evidence, Professor Jessica
Corner and Dr Richard Wagland have collaborated with researchers at Leeds
on the design and analysis of the Department of Health National Cancer
Patient Reported Outcomes Surveys of cancer survivors in England 1-5
years following diagnosis [3.5 and 3.6] and the 2012 national survey of
all colorectal cancer patients in England. As a direct result of our
research and impact on policy 21,000 colorectal cancer survivors from
every NHS Trust in England have now reported their health status in the
first comprehensive survey of cancer survivors' health outcomes in the
Our research [3.2] showed for the first time that UK cancer survivors not
only had poorer health and well-being than healthy individuals, but also
had similar health profiles and levels of dependence on health services as
those living with other long term conditions. This has profound
implications for the organisation and delivery of health services and has
informed the Department of Health's National Cancer Survivorship
Against this background, Dr Elizabeth Reed and Professor Jessica Corner
conducted the first survey to map the quality of life and health outcomes
of women living with metastatic breast cancer. The findings revealed high
levels of unrelieved pain and need for support services for women who were
leading otherwise normal lives [3.4]. This study provided data used by the
Secondary Breast Cancer Taskforce to underpin its policy interventions.
References to the research
3.1 Corner, J., Wright, D., Hopkinson, J., Gunaratnam, Y.,
McDonald, J. W. & Foster, C. (2007) The research priorities of
patients attending UK cancer treatment centres: Findings from a modified
nominal group study. British Journal of Cancer, 96 (6): 875-881.
3.2 Elliott, J., Fallows, A., Staetsky, L., Smith, P. W. F., Foster,
C. L., Maher, E. J., Corner, J. (2011) The health and
well-being of cancer survivors in the UK: findings from a population-based
survey. British Journal of Cancer, 105: S11-S20.
3.5 Glaser, A., Fraser, L., Corner, J., Feltbower, R., Morris, E.
J. A., Hartwell, G., Richards, M., Wagland, R. (2013). Patient-reported
outcomes of cancer survivors in England 1-5 years after diagnosis: a
cross-sectional survey. BMJ Open, 3: e002317
1. Corner, J. 5 year funding for Macmillan Research Unit 2003-2008.
£1,160,121, Macmillan Cancer Support. Awarded 2003.
2. Foster, C., Fenlon, D., Corner, J. 5 year funding for Macmillan
Survivorship Research Group 2009-2014. £1,447,924, Macmillan Cancer
Support. Awarded 2009.
3. Corner, J., Reed, E., Simmonds, P., Gulliford, T. A study of the
experience of living with secondary breast cancer. Breast Cancer Campaign.
£171,887. Awarded 2004.
Details of the impact
Impact on public policy
Our work has two routes to impact. First, through our relationships with
the Department of Health(DH) and second, through our partnership with Macmillan
Cancer Support. Our research has inspired action to reorganise
cancer services through the recently established National Cancer
Survivorship Initiative (NCSI). Increased awareness of the unmet
needs of cancer survivors as a result of our work supports major health
policy change in the UK and informed the NCSI 2010 Vision [5.5], and has
influenced policy internationally promoting greater involvement of cancer
survivors in developing health service priorities [5.2, 5.3]. As a result,
addressing the needs of people who survive cancer has become core to
public policy and is changing public perception of the disease. The NCSI
has become an integral part of DH National Cancer Strategy and is
an important component of the DH's Improving Outcomes: A Strategy for
Cancer, published in January 2011. Further evidence of direct impact
may be found in the National Cancer Research Institute Strategic Plan
for 2008-2013 [5.4] which proposed actions to address `detection,
diagnosis and prognosis' and `improving clinical outcomes and
survivorship' for those living with and beyond cancer by highlighting the
needs of cancer survivors to policymakers, funding bodies and service
More recently, our work on the experiences of women living with
metastatic breast cancer was widely cited by media and policymakers (for
example the NCSI report [5.6] published in March 2013). The research,
funded by Breast Cancer Campaign, drew attention to this neglected
group and, for the first time, illustrated how the disease unfolds from
first diagnosis to death, using new mapping techniques devised at the
University of Southampton. This research received attention in Parliament
[5.9] when Baroness Morgan referenced the study in the House of Lords in
November 2011 during the discussion of the Health and Social Care Bill,
and was widely publicised in the media [5.10, 5.11] including the Daily
Mail (circulation 1.8 million). Most importantly this has led to the
development of a movement in support of the 36,000 women living with
secondary breast cancer in the UK [5.12].
Impact on services
More than a million people will benefit from new models of aftercare
resulting directly from the NCSI. We demonstrated that cancer and the
emotional and physical side effects of cancer treatment impose an on-going
burden for individuals in remission that had not been previously
recognised. This now underpins the NCSI and is driving a change in the
approach to care following initial cancer diagnosis and after successful
treatment which places greater emphasis on supporting recovery. Professor
Corner chairs the self-management work stream in the NCSI and our research
[3.1, 3.2, 3.3] has demonstrated cancer survivors' need for information,
care and support for self-management. This has led to the DH, Macmillan
Cancer Support and NHS [5.1, 5.5] focussing on the design
and implementation of supported self-management care models. Data from the
Macmillan Health and Wellbeing Study [3.2] underpins the 2010 NCSI
Vision report [5.5] and studies by the Macmillan Survivorship
Research Group underpin the NCSI guidance issued in Living with and
beyond cancer: taking action to improve outcomes report [5.6].
Impact on funding bodies
The Macmillan Listening Study informed research priorities of national
cancer charities Macmillan Cancer Support and Breast Cancer
Campaign. It resulted directly in Macmillan Cancer Support
establishing a User Led Research Grant Scheme which ran for four
consecutive years. This provided funding for studies where patients,
caregivers and cancer survivors have an equal voice in deciding research
questions and approaches with researchers and clinicians [5.8]. The report
is cited in the Breast Cancer Campaign's gap analysis [5.13] indicating
the need for research to focus on the impact of cancer on everyday life.
Southampton's innovative research methods in which service users with
cancer co-led the Macmillan Listening Study has been highly influential
nationally [5.7] and internationally [5.2]. The methods used in the study
have been adopted in palliative care (Perkins et al., 2007) and Professor
Corner was a member of the advisory panel for the Australian National
Framework for Consumer Involvement in Cancer Control established by
the Australian Federal Government. The framework report was published in
2011 and cited the study [5.3]. In addition, Professor Corner is Chair of
the Movember Foundation Survivorship Action Partnership Global
Advisory Committee. Launched with funds of over $28 million, using the
model of supported self-management developed through the NCSI the Survivorship
Action Partnership is a global programme to develop networks in
Australia, Canada, UK and USA focussed on implementing innovation to
improve the lives of men living with prostate cancer.
Sources to corroborate the impact
5.1 Letter of endorsement from Professor Sir Mike Richards, Director for
Reducing Premature Mortality (Domain 1), NHS England.
5.2 Letter of endorsement from Susan Hanson, Australian Government Cancer
5.3 Cancer Australia and Cancer Voices Australia (2011). National
Framework for Consumer Involvement in Cancer Control. Cancer Australia,
Canberra, ACT. Cites Listening study http://canceraustralia.gov.au/publications-resources/cancer-australia-publications/national-
framework-consumer-involvement-cancer (Listening Study cited 11
times in PDF report: pages 24, 25, 28, 29, 30, 33, 34 — reference 28 in
5.4 National Cancer Research Institute Strategic Plan 2008-2013
(published April 2008). Cites Listening Study: see page 13; reference
listed on page 55.
5.5 National Cancer Survivorship Initiative Vision report (2010).
Cites Macmillan Health and Well-being Survey 2008 (pages 12, 14, 40, 54)
which became detailed Elliott et al., paper provided as reference 3.2
5.6 National Cancer Survivorship Initiative report (March 2013): Living
with and beyond cancer: taking action to improve outcomes. Cites
Foster & Fenlon, 2011 as Key evidence on page 91; Cites Reed et al.,
2012 for Further Reading on page 112.
5.7 INVOLVE (2012) Briefing notes for researchers: involving the
public in NHS, public health and social care research. Cites
Listening Study (2 references on page 48)
5.8 Macmillan User Led Grant Competition information (A direct result of
the Listening Study). See pdf document on:
5.9 Discussion of Health and Social Care Bill in House of Lords on 28
November 2011 — reference to advanced breast cancer research
The main reference to our work is stated under the following: 28 Nov 2011:
Column 73, 7.15pm, Baroness Morgan of Drefelin, paragraph 3 onwards.
5.10 Examples of media interest in the advanced breast cancer research
(Reed et al., 2011) Mail Online — http://www.dailymail.co.uk/health/article-2064317/Women-advanced-breast-cancer-feel-neglected-healthcare-left-suffering-extreme-pain.html#comments
5.11 Huffington Post — http://www.huffingtonpost.co.uk/2011/11/21/breast-cancer-sufferers-pain-drugs-medicine_n_1104864.html
breast-cancer-campaign References Reed's research in Appearance
versus Reality paragraph.
5.13 Breast Cancer Campaign Gap Analysis (2013) http://breast-cancer-research.com/content/15/5/R92.
References Listening Study [3.1] and Foster and Fenlon's conceptual