The document outlines the development of a national strategy for cancer survivorship research in the UK, emphasizing the importance of understanding the long-term needs of cancer survivors. It discusses various research initiatives, findings from surveys about survivor challenges, and the need for greater collaboration and data collection. The report also highlights key recommendations for improving survivorship care and research, particularly relevant for Ireland.

1. Developing a national strategy for
research into cancer survivorship in
the UK
Irish Cancer Society
Survivorship Research Day
19th September 2013
Jim Elliott PhD
jim@drakesyard.co.uk

2. Outline - the story
• Origins of survivorship research strategy in the UK - The Macmillan
Listening Study / Yesterday‟s Women
• Developing a national focus for survivorship - National Cancer Survivorship
Initiative
• NCSI strategy - Evidence review / Health and wellbeing survey / Research
Workstream report
• Key elements of a national research strategy:
– Prevalence data
– Health service data - National Cancer Intelligence Network
– Use of data - Natural history / Routes from Diagnosis
– Interventions, outcomes and experience
– Building capacity
• Recommendations for Ireland?

3. My background
• Macmillan Cancer Support Head of Research
• NCSI Research Workstream
• Cancer carer
• Independent Cancer Patients Voice
• NCRI Primary Care CSG Survivorship sub-group

4. Macmillan
Listening Study
•First study to explore
perceptions of cancer
research of people affected by
the disease (2004-2006)
•Determined the priorities for
research of people with
cancer and enabled them to
influence the direction of
cancer research
•Participatory and
exploratory, qualitative study
using consultation groups
•105 people in 12
consultation groups across
the UK, broadly
representative of the UK
population

5. Rank Key theme Total rank score
[Possible
Range: 1 – 102]
No. consultation
groups in which
topic received at
least one vote
N=17
1 Impact on life, how to live with cancer and related
support issues
68 13
2 Risk factors and causes 58 12
3 Early detection and prevention 48 9
4 Research into general information needs (on
cancer, treatment, research and access to)
34 11
5 Use and effectiveness of complementary and
alternative therapies
30 7
6 General education of public about cancer 24 5
7 Research into different cancer and patient types 23 7
7 Research on treatment (curative treatment,
treatment types and improvements)
23 5
7 Experiences and management of side effects 23 7
8 Organisation and funding of health and social
care services
21 6
9 Coordination, impact and funding of research 19 4
10 Research into recurrence 11 3
11 General communication issues involving all
parties
10 3
12 Accessing patients‟ views about cancer, services
and research
9 2
13 Health and safety in the hospital 1 1
Corner, J. et al., (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.

6. Yesterday’s Women
• Macmillan report about R.A.G.E (Radiotherapy Action
Group Exposure)
• Women treated with radiotherapy in early 1980s for breast
cancer after surgery
• Over dosing caused severe acute effects (burning) and 5 to
7 years later severe neurological late effects, many losing
the use of one and some both arms
Hanley B, Staley K. Yesterday‟s Women. The Story of R.A.G.E. (Macmillan Cancer Support, 2006).

7. Yesterday’s Women
• Attempts to seek treatment and compensation met with
resistance and closing of professional ranks:
• “.. the hospital kept denying to me that there was any
problem at all. My request to see a radiologist was refused
„There was no point‟. The consultant almost reduced me to
tears. I was „neurotic, arthritic‟ and it was „all in my mind‟.
My husband was advised to „trade me in for one that
doesn‟t moan‟!!”

8. Yesterday’s Women
• Nearly 30 years after their treatment those women still alive
are only just now getting some of the recognition and care
they should have had when the problems first arose
• An extreme case but an important lesson about the risks in
treating cancer and that life does not always return to
“normal”
• Part of the case for developing NCSI

9. A national focus for survivorship
• National Cancer Survivorship Initiative (NCSI)
• Joint initiative by Department of Health, Macmillan Cancer
Support and NHS Improvement to address the long term
[unmet] needs of people living with and beyond cancer
• 2010 Vision to ensure that survivors get the care and
support they need to lead as healthy and active a life as
possible, for as long as possible

10. 10
NCSI Survivorship pathway
and five key shifts
• Cultural shift to recovery, health and wellbeing
• Holistic assessment and personalised care planning
• Supportive self management
• Tailored aftercare
• Routine measurement of experience and outcomes

11. Scale of the issue
• 2 million cancer survivors in the UK in 2010*,
• 1.24 million (62%) diagnosed > 5 years ago*
• 500k (25%) in poor health*
• In Ireland:
– 104k 17-year prevalence (National Cancer Registry Annual
Report 2013)
– Estimate 147k total survivors based on UK data
– Approx. 91k diagnosed > 5 years ago and
37k in poor health?
*Macmillan Cancer Support, Throwing light on the consequences of cancer and its treatment,
2013

12. NCSI vision / aims for research
• Understand the current evidence on survivorship and
identify key gaps
• Develop a strategic framework to address the priority areas
of need / uncertainty, with....
• A strong focus on practical interventions to improve the
experience, health and wellbeing of people living with
cancer, and....
• Develop tools to assess the likelihood and significance of
different events occurring to enable timely, relevant and
effective support

13. Defining survivorship
= consequences of cancer and its treatment
Person
Demographics
Lifestyle
Co-morbidies
Treatment
Surgery
Chemotherapy
Radiotherapy
Tumour
Site(s)
Stage

15. Health and wellbeing survey
• 4892 participants > 30 yrs
• 780 cancer survivors, 367 also with 1 or more of 10 chronic
conditions
• 1,372 people with 1 or more of 10 chronic conditions
• 2,780 “healthy” people
• 13 measures of health and wellbeing including social
issues about work and finances

16. Health and wellbeing survey results
0
2
4
6
8
10
12
14
16
Cancer survivors
with no chronic
conditions
Cancer survivors
with one or more
chronic conditions
One chronic
condition
Two or more
chronic conditions
Odds
ratio
Estimated adjusted odds ratios with corresponding confidence intervals
Elliott J, Fallows A, Staetsky L, Smith PWF, Foster CL, Maher EJ and 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
0
2
4
6
8
10
12
Cancer survivors
with no chronic
conditions
Cancer survivors
with one or more
chronic conditions
One chronic
condition
Two or more chronic
conditions
Odds
ratio
General Health Health prevented working in preferred occupation
Cancer survivors significantly more likely to report poor outcomes across all 13
measures than those with no history of cancer or chronic conditions

17. NCSI research worksteam approach
• Following on from the Health and Well-being Survey
• Mapping of survivorship „journey‟ – carried out for prostate,
lung, breast and colorectal cancer and for the less common
cancers (Cancer 52) – involving internal and external
stakeholder consultation
• Evidence review to assess the knowns and not knowns of
survivorship research
• Research workstream report to indicate priorities for
research questions for new research programme

18. Comprehensive review of the evidence base
• Carried out by CECo and COMPASS NCRI supportive and palliative
care research collaborative groups
• „Evidence‟ considered includes published literature + unpublished
reports and studies, ongoing research and collections of quality of life
data
• Included consultation with the research, charity and cancer survivor
communities
• The emphasis was on finding practical solutions

19. Fatigue & physical functioning
Problem
• Strong evidence experienced in short term, modest evidence in longer term
Solution
• Some evidence for patient education, rehabilitative approaches (exercise + CBT)
Best buys
<2 yrs a) Pilot/feasibility studies on fatigue assessment
b) Study barriers to fatigue management implementation
2-5 yrs Large multi-centre fatigue management studies
>5 yrs Prospective cohort studies with age matched controls

20. Emotional distress & anxiety
Problem
• Moderately strong evidence post treatment, some evidence in longer term
(recurrence)
Solution
• CBT, aromatherapy for short-term relief, exercise
Best buys
<2 yrs a) Assess prevalence & risk factors (secondary analysis)
b) Pilot/feasibility studies on detection & intervention methods
2-5 yrs Large trials of patient education, guided self-help, telephone interventions
(CBT) and fear of recurrence (CBT)
>5 yrs a) large prospective cohort studies (mixed cancers)
b) studies to improve understanding, identification & management in specific
groups (men, BME groups)

21. Findings from research work stream
• Some good research across many aspects of the
survivorship journey but:
• Survivorship research lacks any formal identity and thus
strategic direction
• Issues and problems faced by cancer survivors not
systematically identified and quantified
• Solutions not necessarily focussed on greatest areas of
need / what is important to patients
• Poor implementation of existing research
21

22. Recommendations of research work stream:
priorities for research
• Understanding the natural history of survivorship and
creation of risk stratification tools
• Targeting of interventions based on natural history and
addressing „best buys‟ from evidence review
• Systematic development of routine patient-driven
outcome measures
• Evaluation of interventions & models of care including
economic evaluation
22

23. Recommendations of research work stream:
infrastructure
• Development of a national strategy for survivorship
research aligned to NCSI vision and five key shifts in
care and support
• Coordination of research funding across the UK
focussed on larger studies and use of existing cohorts
wherever possible
• Greater collaboration between researchers and links
beyond cancer
23

24. Key elements of a national survivorship
research strategy
• Prevalence data
• Health service data - National Cancer
Intelligence Network
• Use of data - Natural history / Routes from
Diagnosis
• Interventions, outcomes and experience
• Macmillan Cancer Population Evidence
Programme

25. Prevalence data
• Incidence and mortality data: treatment and prevention
research
• Prevalence data: survivorship research
• Stratify survivors by:
– Diagnosis
– Time since diagnosis
– Treatment
– Co-morbidities
– Demographics

26. 26
Prevalence by site differs from incidence and
mortality by site
0
5
10
15
20
25
30
Colorectal Lung Prostate Breast
Percent
Incidence
Mortality
Prevalence
Based on England 2004

27. The cancer care pathway
Diagnosis &
Treatment
Recovery and
adjustment
Early
monitoring
End of life care
[Year 1 deaths]
Progressive
illness
Later
monitoring
Newly
diagnosed –
assumed need
of acute
sector care
Surviving the
first year –
assumed need
of rehabilitation
Up to 5 and 10
years from
diagnosis –
designated as
‘early
monitoring’
Incurable
disease but not
in last year of
life
End of life care
in last year
Beyond 10
years from
diagnosis –
designated
‘later
monitoring’
Transition Points

28. 9
Different cancers have different „shapes‟

29. Using health service data
Diagnosis
Incidence
Death
Mortality
Prevalence
Collect treatment, care, experiences and outcome
data throughout the cancer journey
National Cancer Data Repository
Cancer Registry
National Cancer Intelligence Network

30. Natural history
• Using clinical attendance patterns to define cancer
survivorship = Routes from Diagnosis
• Better understanding of the health consequences
of cancer and its treatment
• Link with cancer prevalence data
• To enable the development of risk stratified
pathways to inform care and support

31. Macmillan and NCIN are working in partnership to
develop a greater understanding of the Cancer
Population
• Segmenting the cancer population
• Routes from Diagnosis
• Developing routine survivorship stats
• Outcomes and Experience
• Costing
• Social Care
UK wide and country specific analysis

32. Costs of
inpatient
care
pathway
Hospital
Episode
Statistics
National
Cancer Data
Repository
Patient
experience
Other
outcomes
Is there a link?
Segmenting the
cancer
population
Identifying
progressive
disease

33. We know more about how they
interact with the system
We know more about how the
costs of clinical journey varies
depending on complexity and
length of survivorship
Macmillan’s Routes from Diagnosis Programme

34. Interventions
• Still a need for trials and other well designed
studies to develop and evaluate interventions for
specific conditions
• Currently left to individual research teams [still] in
absence of collaborative national research strategy
• Build on and update NCSI evidence review
• Must not forget social consequences too

35. The impact of cancer and its treatment
•
• Patient Reported
Outcome Measures
(PROMS) give insight:
• the quality of life for
those living with and
beyond cancer from their
experiences and point of
view
• the impact of cancer and
treatments on ability to
lead meaningful lives.

36. What did people tell us?
– 1 year post diagnosis nearly half feared recurrence and
almost a third were afraid of dying.
– 38% of prostate cancer survivors reported urinary leakage
and 58% reported impotence.
– One in five colorectal survivors reported difficulty in bowel
control.
– QOL is closely associated with disease status and presence
of other long term conditions.
– Almost a third reported doing no physical activity and
around a fifth did the weekly recommended CMO physical
activity i.e. 30 mins x 5.
– Increased physical activity associated with better QOL.

37. Building capacity
• Collaboration key to avoid isolation
• Need for fellowships and career structure
[still] to build critical mass and attract
researchers to the field

38. Challenges for cancer survivorship research from NCSI
• Comprehensive and representative data on the actual problems of
survivors
• More accurate case definitions of survivors
• Long-term surveillance of cancer survivors across major dimensions of
optimal survivorship both health and functional outcomes
• Development of validated risk factors for optimal survivorship,
understanding how they interact and approaches that can be modify
them
• Better understanding and effective approaches to smoothly reintegrate
the cancer survivor into society

39. Recommendations for Ireland?
• Holistic and collaborative approach
• Balance:
– Population data – prevalence and Health Service
– Develop and evaluate interventions
– Patient data – PROMS, experience & social needs
– Risk stratification / predictive models to inform assessment
and care planning
– Build research capacity and networks
• Data is key! NCIN!

40. Acknowledgements
• Macmillan Cancer Support:
• Hannah McConnell – Data Lead, Intelligence and Research
• Steve Hindle – Cancer Survivorship Programme Lead
• Lesley Smith – Consequences of Treatment Programme
Manager
• Julie Flynn – Senior Programme Manager – Routes from
Diagnosis
• Helen Ross – Cancer Population Evidence Programme Lead

41. Thank you!
jim@drakesyard.co.uk