2019 NCRI and NHS England Living With and Beyond Cancer event
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National Cancer Research Institute
For Day One queries please contact firstname.lastname@example.org
For Day Two queries please contact email@example.com
Day One agenda
Day Two agenda
Day One Sponsor
Date: Monday 29 April to Tuesday 30 April 2019
Venue: Mercure Manchester Piccadilly Hotel, Portland Street, Manchester, M1 4PH
Organised by: National Cancer Research Institute (NCRI) and NHS England
Sponsor: Macmillan Cancer Support
Registration for this event has now closed
About this event
Welcome to the first NCRI and NHS England joint two-day Living With and Beyond Cancer event
Thanks to improved diagnosis and treatment, more and more people are living with and beyond cancer. As cancer also occurs at a higher rate in older individuals, the prevalence of cancer is increasing as people are living longer. In the UK alone, there were 2.5 million people alive following a cancer diagnosis in 2015, and this is predicted to rise to 4 million by 2030.
This means more and more people each year are living with the consequences of cancer and its treatment which may reduce their quality of life. This growing concern was highlighted by the NHS’s Independent Cancer Taskforce in its 2015 report, which called for the transformation of support for people living with and beyond cancer.
This collaborative NCRI and NHS England event is about how people’s needs can be better met through patient-centred LWBC research and transformation of services.
Day One is part of the NCRI’s ongoing commitment to stimulating vital research that can make much-needed progress in improving health and quality of life for people living with the consequences of cancer and its treatment.
Day Two is for NHS Cancer Alliances, who lead on the local delivery of services, care and outcomes for everyone with cancer. It is part of the NHS England’s ongoing work to support people affected by cancer to radically improve care and support for people once treatment ends.
- Prof Diana Greenfield, Consultant Nurse at Sheffield Teaching Hospital NHS Foundation Trust and Honorary Professor at the University of Sheffield
- Richard Stephens, recent NCRI Consumer Forum Lead (to March 2019) and prominent patient advocate in the field of cancer research
- Prof Sam H Ahmedzai, Emeritus Professor of Supportive Care at the University of Sheffield, NIHR Clinical Research Network National Specialty Lead for Cancer, Chair of NCRI Supportive and Palliative Care Clinical Studies Group and Chair of NIHR Cancer & Nutrition Collaboration Steering Committee
- Dr Derek Kyte, Lecturer in Health Research Methods and Centre for Patient-Reported Outcome Research (CPROR) Assistant Director at the University of Birmingham and NIHR Fellow
- Prof Claire Foster, Professor of Psychosocial Oncology and Director of Macmillan Survivorship Research Group at the University of Southampton
- Prof Richard Shaw, Professor of Head & Neck Surgery and Honorary Consultant in Oral & Maxillofacial at the University of Liverpool, NIHR Clinical Research Network (Cancer) Associate Director & Surgical Oncology Specialty Lead
- Dr Lynn Calman, Principal Research Fellow and Deputy Director of Macmillan Survivorship Research Group at the University of Southampton
- Dr Agnieszka Lemanska, Lecturer in Integrated Care, Pharmacist and TrueNTH Exercise and Diet Study Investigator at the University of Surrey
- David Fitzgerald, Cancer Programme Director for NHS England
- James Sanderson, Director of Personalisation & Choice for NHS England
- Prof Simon Rogers, Consultant Maxillofacial Surgeon at the University Hospital Aintree, Honorary Reader at the University of Liverpool and Chair of NHS England Quality of Life Metric Steering Group
- Speakers from NHS England, Cancer Alliances and charities
Who should attend:
Please note: Day Two is open only to NHS Cancer Alliances and Day One is a paid event.
Sign up for this day if you involved in or are interested in being involved in and fostering LWBC research. This event will benefit multidisciplinary cancer care/research professionals including:
- Consultants and trainee doctors in oncology, acute/general medicine, palliative care
- Nurses and allied health care professionals in oncology, palliative care
- GPs and GP trainees interested in related research
- Doctors training in related specialties
- Researchers in oncology, palliative care
- Patient and carer advocates and representatives
This day is for NHS England Cancer Alliance teams and invited guests. It is free to attend and each Cancer Alliance team may nominate up to 6 delegates. Please coordinate attendance and registration with your Alliance LWBC lead.
Day Two will focus on the transformation work for LWBC in Cancer Alliances and their partners.
This event will provide delegates working in or looking to work in the LWBC research field with:
- An opportunity to shape their LWBC research ideas in line with the research priorities set out by patients, carers and health care professionals
- An opportunity to network with like-minded colleagues and explore potential collaborations
- Help/advice from the NCRI, funders and peers on developing ambitious and successful LWBC research proposals, to address the NCRI LWBC research priorities
This event will provide delegates across Alliances the opportunity to share with and learn from each other examples of best practice and local learning for personalising care and support for people living with and beyond cancer.
£75 Allied health care professional/Nurse/Funders
£50 Day Two delegates
£30 Patient/Carer representative
Free to attend. Open to Cancer Alliances only.
Day One – Monday 29 April 2019, 10:00 – 16:30
Making your research matter to people living with and beyond cancer
|9:30 – 10:00||Arrival, coffee and registration|
|10:00 – 10:05||Welcome
Dr Iain Frame, Chief Executive, National Cancer Research Institute (NCRI)
|10:05 – 10:40||Living With and Beyond Cancer (LWBC) research priorities
Chair: Dr Iain Frame
How we got here: the LWBC James Lind Alliance Priority Setting Partnership [download presentation]
Prof Diana Greenfield, Consultant Nurse, Sheffield Teaching Hospital NHS Foundation Trust
The LWBC research priorities [download presentation]
Richard Stephens, NCRI Consumer Forum
|10:40 – 11:05||The role of the National Cancer Research Institute (NCRI) and Clinical Studies Groups (CSGs) in developing LWBC research studies
Chair: Dr Ian Lewis, Head of Strategy and Initiatives, NCRI
Introduction: The NCRI CSGs and other groups [download presentation]
Nicola Keat, Head of Clinical Research Groups, NCRI
From generating research ideas to improving outcomes: what the NCRI CSGs can deliver
Prof Sam Ahmedzai, Chair of NCRI Supportive and Palliative Care CSG, NIHR Clinical Research Network National Specialty Lead for Cancer
|11:05 – 11:25||Coffee break and Networking session|
|11:25 – 12:25||Successful study design
Chair: Emma Kinloch, NCRI Consumer Forum Lead (from April 2019)
Optimising patient-reported outcome (PRO) capture in research [download presentation]
Dr Derek Kyte, Lecturer in Health Research Methods and Centre for Patient-Reported Outcome Research (CPROR) Assistant Director, University of Birmingham
Macmillan HORIZONS Programme: establishing a UK-wide prospective cohort to understand the impact of cancer and its treatment on everyday lives [download presentation]
Prof Claire Foster, Director of Macmillan Survivorship Research Group, University of Southampton
HOPON, DAHANCA 21 – lessons in methodology and avoiding pitfalls [download presentation]
Prof Richard Shaw, Professor of Head & Neck Surgery, University of Liverpool, NIHR Clinical Research Network (Cancer) Associate Director & Surgical Oncology Specialty Lead
|12:25 – 13:15||Funding for LWBC research
Chair: Mariano Kälfors, Programme Manager for LWBC Research Initiative, NCRI
Macmillan Cancer Support [download presentation]
Meera Craston, Head of Evidence
National Institute for Health Research (NIHR) [download presentation]
Dr Ruth Nebauer, Assistant Director of Innovation Programmes
Marie Curie [download presentation]
Dr Sabine Best, Head of Research
Medical Research Council (MRC) [download presentation]
Dr Mariana Delfino-Machin, Programme Manager for Cancer
|13:15 – 14:05||Lunch|
|14:05 – 15:30||Parallel workshop sessions
A – Models of care (Facilitator – Dr Agnieszka Lemanska) [download presentation]
B – Consequences of treatment (Facilitators– Prof Claire Foster, Dr Eloise Radcliffe) [download presentation]
C – The challenge of PROs in LWBC research (Facilitators– Dr Lynn Calman, Dr Josh Turner) [download presentation]
D – Keeping research close to the patients (Facilitator – Prof Diana Greenfield) [download presentation]
|15:30 – 15:55||Coffee break and Networking session|
|15:55 – 16:25||Feedback from breakout session
Dr Ian Lewis
|16:25 – 16:30||Close|
Day Two – Tuesday 30 April 2019, 10:15 – 16:00
Personalising care and support for people living with and beyond cancer
|09:45 – 10:15||Arrival and Registration|
|10:15 – 11:00||Personalising care and support for people living with and beyond cancer
Long Term Plan and the role of Cancer Alliances
David Fitzgerald, Cancer Programme Director, NHS England
The NHS Comprehensive Model of Personalised Care
James Sanderson, Director of Personalisation & Choice, NHS England
What personalisation of care means to me
Jo Taylor, Founder of After Breast Cancer Diagnosis
|11:00 – 11:30||Coffee break and networking|
|11:30 – 12:30||First parallel workshop session
A series of parallel workshops led by organisations across Alliances to share examples of best practice and local learning.
Delegates’ workshop choices must be made at time of event registration and cannot be altered. Delegates will be reminded of these on arrival. See below for workshop titles.
|12:30 – 13:15||Lunch and networking|
|13:15 – 14:15||Second parallel workshop session|
|14:15 – 14:30||Coffee break|
|14:30 – 15:30||Third parallel workshop session|
|15:30 – 15:50||Quality of Life Metric
Why do we want to measure QoL?
Prof Simon Rogers, Consultant Surgeon and Chair of the QoL Metric Steering Group
What have we learned from the QoL pilot project so far?
Dr Alice Simon, Senior Project Manager, NHS England
|15:50 – 16:00||Closing summary
Dr Lesley Smith, Senior Programme Manager, NHS England
|Session||Workshop||Workshop title, facilitators and chairs|
|1||A||How can the main cancer information systems enable us to deliver better personalised care?
Ruth McCarthy (Somerset) and Sarah Waters (Infoflex); chaired by Debra Palmer (West Midlands)
|B||Evaluation of LWBC interventions / Using data to influence change
Natasha Crawford (NHS England) and Steve Scott (RM Partners & NHS England); chaired by Lesley Smith (NHS England)
|C||Allied Health Professionals into Action on Cancer
Karen Livingstone (Macmillan Cancer Support) and Lucy Smith (NHS); chaired by Anna Lowe (PHE)
|Personalised (stratified) follow up – focus on prostate cancer
Liz Price (TCST) and Hazel Brodie (Wessex Cancer Alliance); Chaired by Scott Alker (Lancs and S Cumbria)
NHS England comprehensive model of personalised care: Personalised care and support planning
Sarah Leach (NHS England and NHS Improvement); Chaired by Gemma Clifford
|2||F||How is the workforce changing to meet the needs of people living with and beyond cancer?
Sharon Rowe (Cheshire & Merseyside) and Jane Winter (Wessex); chaired by Dany Bell (Macmillan Cancer Support)
|G||Health and wellbeing support – interactive workshop
Ghazala Kazmi (NHS England and NHS Improvement); Chaired by Lesley Smith (NHS England and NHS Improvement)
Zoe Merchant (Greater Manchester), Dr John Moore (Greater Manchester) and June Davis (Macmillan Cancer Support); chaired by Fran Williams (Wessex)
|Personalised (stratified) follow up – focus on breast cancer
Nikki Snuggs (Royal Marsden), Dr Jane McNicholas (Lancs and S Cumbria), Leanne Cowgill (Lancs and S Cumbria); Chaired by Dorothy Goddard (SWAG)
NHS England comprehensive model of personalised care: Supported self-management and social prescribing
Chaired and presented by Gemma Clifford (NHS England and NHS Improvement)
|3||K||Commissioning and contracting for personalised care – practical approaches
Richard Metcalfe (South Yorkshire, Bassetlaw, North Derbyshire), Laura Hope (Northern); Chaired by Georgina Wiley (Macmillan Cancer Support)
|L||Treatment summaries – interactive workshop
Lesley Smith (NHS England); Chaired by Alan Bateman (East of England)
|M||Role of primary care
Dr Rosie Loftus (GP and Chief Medical Officer, Macmillan Cancer Support), Dr Anthony Cunliffe (GP and GP Advisor, Macmillan Cancer Support); Chaired by Dr Bana Haddad (Kent and Medway)
|Personalised (stratified) follow up – focus on colorectal cancer
Dr May Teoh (Surrey & Sussex), Stephanie Bell (Surrey & Sussex), Catherine Neck (SWAG); Chaired by Claire Mallet (Kent and Medway)
NHS England comprehensive model of personalised care: Personal health budgets and integrated budgets
Sarah Leach (NHS England and NHS Improvement); Chaired by Gemma Clifford (NHS England and NHS Improvement)
We put the current and future needs of people living with cancer at the centre of our research, to ensure we understand the numbers, needs and experiences of people living with cancer. We directly provide, work in partnership with or influence others to help everyone with cancer live life as fully as they can. Our partnership with the NCRI supports this and enables us to work together with the other cancer research bodies in the UK to achieve this mission.
We’re here to help everyone with cancer live life as fully as they can, providing physical, financial and emotional support. So whatever cancer throws your way, we’re right there with you.
Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland.
To find out more about the sponsorship and exhibition opportunities available at this event, please contact firstname.lastname@example.org.
SafeSpace: a calming, healing virtual reality environment
SafeSpace is a virtual reality intervention study by the Royal Marsden NHS Foundation Trust and the University of Southampton. It is being funded by Macmillan Cancer Support as part their 2017 call which included grants for research proposals on ‘the use of digital technology to improve the experience and outcomes of people living with cancer’.
Visit the stand during the event for an opportunity to test the technology and to hear how the research team is co-developing – designing, creating and testing – SafeSpace with patients to enable people with cancer to experience a rapid reduction in stress and improved wellbeing. Find out as well about the anticipated long-term impact of SafeSpace for people living with cancer.
For more information about SafeSpace read the team’s blog, visit the Macmillan Cancer Support funded research site and find the study on the NCRI Portfolio Maps (‘Psychosocial Oncology and Survivorship’ area, Map A).
Their cancer journeys: artistic expressions of living with cancer
The event also features a small art display, curated by Ms Yuki Alencar, of mono-prints produced by cancer patients and carers provided by the Cancer Survival Group at the London School of Hygiene & Tropical Medicine. The LSHTM research group and the NCRI Consumer Forum have a longstanding relationship and the Forum was the first cancer patient group in the world to sign up to the group’s Concord 2 study, the global study of survival data, in 2012.
The artworks are the outcome of a one-day art workshop in Newcastle in November 2018, which gathered together cancer researchers, patients and a carer to produce prints representing their cancer journeys. The display was first exhibited at the Newcastle City Library.
LWBC Priority Setting Partnership (PSP) key documents
See the ‘Resources‘ section.
Patient Reported Outcome (PRO) tools
See the ‘Resources‘ section.
On patient led Patient Reported Outcome Measures (PROMs)
Wilson R (2018) Patient led PROMs must take centre stage in cancer research Research Involvement and Engagement 2018 4:7 https://doi.org/10.1186/s40900-018-0092-4
Selby P & Velikova G (2018) Taking patient reported outcomes centre stage in cancer research – why has it taken so long? Research Involvement and Engagement 2018 4:25 https://doi.org/10.1186/s40900-018-0109-z
On improved outcomes for patients as a consequence of the conduct of clinical research
Selby P, Liu, L, Downing, A et al (2019) How can clinical research improve European health
outcomes in cancer? Journal of Cancer Policy 20 https://doi.org/10.1016/j.jcpo.2019.100182
On generating evidence to inform policy and practice
Foster C, Calman L, Richardson A, Pimperton H, Nash R. Improving the lives of people living with and beyond cancer: Generating the evidence needed to inform policy and practice. Journal of Cancer Policy. 2018;15:92-5. https://doi.org/10.1016/j.jcpo.2018.02.004