Cancer & Nutrition NIHR infrastructure collaboration Supportive & Palliative Care CSG Trials Meeting 25th September 2017 London – The Shard Lesley Turner NCRI Supportive and Palliative Care CSG

Improving cancer prevention and care. For patients. For clinicians Improving cancer prevention and care. For patients. For clinicians. For researchers. Background: Established in 2014 by Professor Alan Jackson, Southampton BRC and NOCRI Working in collaboration with partners including WCRF, CRUK, several BRCs, ECMC, AMRC. Patients are at the heart of the collaboration Aims: To raise awareness of opportunities for improved research to benefit patients and the public at all stages of the cancer process. To promote and enable research to address knowledge gaps in nutrition at all stages of life in relation to cancer. To foster a community of clinicians, patients, the public, and researchers to share knowledge, understanding and best practice to jointly deliver the highest quality research. MATT: Aims To discuss how we can best support patients in the area of cancer and nutrition To discuss how we can enable better access to trusted nutritional guidance (building on the work of the NIHR Cancer and Nutrition infrastructure collaboration). To explore how we can improve nutritional guidance for cancer patients by enabling research in areas where there are identified gaps or where there is insufficient research evidence. To agree how we will continue this discussion, identify and prioritise areas for future joint working.

Nutrition and Cancer Cancer includes all types, sites and stages of cancer. Stages of cancer include prevention, diagnosis, treatment, survivorship and palliative and end of life care Nutrition is the set of integrated processes by which cells, tissues, organs and the whole body acquire the energy and nutrients for normal structure and function, which is achieved at body level through dietary supply, and the capacity of the body to transform the substrates and cofactors necessary for metabolism. All of these domains (diet, metabolic capacity, body composition and level of demand for energy and nutrients) are influenced by levels of physical activity and can vary according to different physiological and pathological or disease states. MATT: Aims To discuss how we can best support patients in the area of cancer and nutrition To discuss how we can enable better access to trusted nutritional guidance (building on the work of the NIHR Cancer and Nutrition infrastructure collaboration). To explore how we can improve nutritional guidance for cancer patients by enabling research in areas where there are identified gaps or where there is insufficient research evidence. To agree how we will continue this discussion, identify and prioritise areas for future joint working.

Improving cancer prevention and care. For patients. For clinicians Improving cancer prevention and care. For patients. For clinicians. For researchers. MATT: Aims To discuss how we can best support patients in the area of cancer and nutrition To discuss how we can enable better access to trusted nutritional guidance (building on the work of the NIHR Cancer and Nutrition infrastructure collaboration). To explore how we can improve nutritional guidance for cancer patients by enabling research in areas where there are identified gaps or where there is insufficient research evidence. To agree how we will continue this discussion, identify and prioritise areas for future joint working.

Improving cancer prevention and care. For patients. For clinicians Improving cancer prevention and care. For patients. For clinicians. For researchers. March 2014  Establishing the Collaboration & stakeholder engagement Phase One: Patient experience survey Clinicians survey Mapping of UK cancer & nutrition research October 2015  Phase Two: Setting aims & objectives for Phase 2 and beyond Developing Work Streams MATT: Aims To discuss how we can best support patients in the area of cancer and nutrition To discuss how we can enable better access to trusted nutritional guidance (building on the work of the NIHR Cancer and Nutrition infrastructure collaboration). To explore how we can improve nutritional guidance for cancer patients by enabling research in areas where there are identified gaps or where there is insufficient research evidence. To agree how we will continue this discussion, identify and prioritise areas for future joint working.

Phase One Patient Survey To establish if patients are being given consistent, evidence-based advice To understand what other nutritional support, advice and care would patients like to receive To determine what the major gaps are in service provision at diagnosis, during and after treatment Key findings N=96, 72% female Breast (36%), kidney (20%), blood (10%) Many reported unsatisfactory experiences of nutritional care in relation to cancer Particular gaps identified by patients: included how to deal with side-effects of chemotherapy, weight changes and specific foods and diets that patients should or should not consume. Identified need for better evidence to allow more reliable and consistent nutritional and dietetic information for cancer patients MATT: Aims To discuss how we can best support patients in the area of cancer and nutrition To discuss how we can enable better access to trusted nutritional guidance (building on the work of the NIHR Cancer and Nutrition infrastructure collaboration). To explore how we can improve nutritional guidance for cancer patients by enabling research in areas where there are identified gaps or where there is insufficient research evidence. To agree how we will continue this discussion, identify and prioritise areas for future joint working.

Phase One Clinician Survey Aim To understand clinicians’ perceptions of the major gaps in clinical practice and research in nutrition and cancer Key findings n=77 Getting recognition of the importance of including nutrition in cancer care is challenging More large-scale interventional trials are needed, but they are difficult to conduct for practical (funding and infrastructure) reasons Better data and scientific evidence needed to produce meaningful advice for patients and recommendations for clinical care Nutritional assessment is not carried out in a systematic way Insufficient training for dietitians and other clinicians wishing to specialise in nutrition and cancer MATT: Aims To discuss how we can best support patients in the area of cancer and nutrition To discuss how we can enable better access to trusted nutritional guidance (building on the work of the NIHR Cancer and Nutrition infrastructure collaboration). To explore how we can improve nutritional guidance for cancer patients by enabling research in areas where there are identified gaps or where there is insufficient research evidence. To agree how we will continue this discussion, identify and prioritise areas for future joint working.

Mapping of UK cancer & nutrition research NCRI data, 5 years (2009-2013) Nutrition and cancer a predefined primary or secondary research aim/outcome 158 awards included (out of 6,579 awards) Account for 1.8% of the total cancer research spend recorded in the NCRI database between 2009 and 2013 MATT: Aims To discuss how we can best support patients in the area of cancer and nutrition To discuss how we can enable better access to trusted nutritional guidance (building on the work of the NIHR Cancer and Nutrition infrastructure collaboration). To explore how we can improve nutritional guidance for cancer patients by enabling research in areas where there are identified gaps or where there is insufficient research evidence. To agree how we will continue this discussion, identify and prioritise areas for future joint working.

Percentage of awards per nutrition theme (%) Mapping of UK cancer & nutrition research Percentage of awards per nutrition theme (%) Percentage of awards per category of cancer research MATT: Aims To discuss how we can best support patients in the area of cancer and nutrition To discuss how we can enable better access to trusted nutritional guidance (building on the work of the NIHR Cancer and Nutrition infrastructure collaboration). To explore how we can improve nutritional guidance for cancer patients by enabling research in areas where there are identified gaps or where there is insufficient research evidence. To agree how we will continue this discussion, identify and prioritise areas for future joint working.

Proportion of spending related to nutrition out of total research spend for the top 10 cancer sites MATT: Aims To discuss how we can best support patients in the area of cancer and nutrition To discuss how we can enable better access to trusted nutritional guidance (building on the work of the NIHR Cancer and Nutrition infrastructure collaboration). To explore how we can improve nutritional guidance for cancer patients by enabling research in areas where there are identified gaps or where there is insufficient research evidence. To agree how we will continue this discussion, identify and prioritise areas for future joint working.

Knowledge translation Phase Two – work streams Information provision and communication with cancer patients and the public Creating a skilled community of practice Identifying major research priorities Characterising nutritional status in cancer Commercial Sector and Industry Public & Cancer Patients Symptom management Nutritional prevention Research Education Practice Person-centred care Patient safety & Risk management Decision making Knowledge translation MATT: Aims To discuss how we can best support patients in the area of cancer and nutrition To discuss how we can enable better access to trusted nutritional guidance (building on the work of the NIHR Cancer and Nutrition infrastructure collaboration). To explore how we can improve nutritional guidance for cancer patients by enabling research in areas where there are identified gaps or where there is insufficient research evidence. To agree how we will continue this discussion, identify and prioritise areas for future joint working.

Patient and public involvement work stream Aim: To establish a framework that ensures patients and the public remain at the heart of the collaboration. Principle achievements: The patient voice is embedded within all activities of the collaboration – two members on each work stream Work stream members have engaged directly in raising awareness within a number of the NCRI CSGs. Patient representation on the Steering Committee Patients organised and ran a patient panel for the Charity Workshop help in London in September 2016. Chair: Lesley Turner MATT: Aims To discuss how we can best support patients in the area of cancer and nutrition To discuss how we can enable better access to trusted nutritional guidance (building on the work of the NIHR Cancer and Nutrition infrastructure collaboration). To explore how we can improve nutritional guidance for cancer patients by enabling research in areas where there are identified gaps or where there is insufficient research evidence. To agree how we will continue this discussion, identify and prioritise areas for future joint working.

Professionals work stream Aim: To establish a framework that brings together doctors, nurses, dietitians and other health professionals across the health system as a community of practice that possesses the necessary generic and specialised understanding, skills and competence to engage in translational research in cancer and nutrition. Principle achievement: An ongoing collaborative project which has engaged over 20 charities to develop a publicly available trusted body of nutritional guidance for cancer patients and clinicians, including a framework to assess the evidence base. Extending the Toolkit work stream’s Phase Two clinicians’ survey to GPs, receiving 79 responses. Phase II Chair: Mr Ramsey Cutress Phase III Chair: Professor Jane Murphy, Deputy Chair: Dr Fehmidah Munir MATT: Aims To discuss how we can best support patients in the area of cancer and nutrition To discuss how we can enable better access to trusted nutritional guidance (building on the work of the NIHR Cancer and Nutrition infrastructure collaboration). To explore how we can improve nutritional guidance for cancer patients by enabling research in areas where there are identified gaps or where there is insufficient research evidence. To agree how we will continue this discussion, identify and prioritise areas for future joint working.

Research work stream Building an infrastructure and action plan to tackle the evidence gap Three sub-groups with experts across the UK have been established to cover all stages of the cancer journey: Experimental - discovery to first-in-man – led Professor Karen Brown, Professor of Translational Cancer Research, University of Leicester Population health: cancer prevention and early detection – led by Professor Elio Riboli, Director of the School for Public Health, Imperial College London Nutritional care in people living with and beyond cancer – led by Professor Sam Ahmedzai, Emeritus Professor of Palliative Medicine, University of Sheffield MATT: Aims To discuss how we can best support patients in the area of cancer and nutrition To discuss how we can enable better access to trusted nutritional guidance (building on the work of the NIHR Cancer and Nutrition infrastructure collaboration). To explore how we can improve nutritional guidance for cancer patients by enabling research in areas where there are identified gaps or where there is insufficient research evidence. To agree how we will continue this discussion, identify and prioritise areas for future joint working.

Research work stream Building an infrastructure and action plan to tackle the evidence gap Principal achievements: Applications made to: CRUK Catalyst Programme (shortlisted) in 2016 NIHR Programme Grants for Applied Research (PGfAR) - a collaborative multicentre diet and physical activity intervention for women with breast cancer (PANACHE) in early 2017. Survey extended to NCRI CSGs to gauge interest in nutrition-related research Workshop held in June 2017 for sub-group 3 to work up grant proposals Workshop held in September 2017 for members of all groups to present ideas and identify potential for collaborative activity Each group is actively defining priority areas for research, ensuring the views of patients/public are recognised and acted upon. MATT: Aims To discuss how we can best support patients in the area of cancer and nutrition To discuss how we can enable better access to trusted nutritional guidance (building on the work of the NIHR Cancer and Nutrition infrastructure collaboration). To explore how we can improve nutritional guidance for cancer patients by enabling research in areas where there are identified gaps or where there is insufficient research evidence. To agree how we will continue this discussion, identify and prioritise areas for future joint working.

Toolkit work stream Characterising nutritional status in cancer Chair: Dr Bernard Corfe, Senior Lecturer, Molecular Gastroenterology Research Group, University of Sheffield Aim To develop a patient-approved ‘Toolkit’ for standardised, quality-assured nutritional assessment for routine clinical care as a screening tool to identify those at risk, and for a more complete nutritional assessment in research settings. Principal achievements: Designed, disseminated and analysed the Phase II clinicians’ survey received over 500 responses from dietitians, doctors and nurses in secondary healthcare settings. The survey focused on current nutritional screening and assessment and opinions on best practice, clinician training requirements and resources used. Planning a workshop for autumn 2017 to bring together experts in nutritional assessment to agree on the Toolkit content MATT: Aims To discuss how we can best support patients in the area of cancer and nutrition To discuss how we can enable better access to trusted nutritional guidance (building on the work of the NIHR Cancer and Nutrition infrastructure collaboration). To explore how we can improve nutritional guidance for cancer patients by enabling research in areas where there are identified gaps or where there is insufficient research evidence. To agree how we will continue this discussion, identify and prioritise areas for future joint working.

Phase Two Clinicians’ Survey – Key Findings N = 610 (inc. primary and secondary care doctors, nurses, dietitians and speech and language therapists) 77% of respondents indicated they screen inpatients for risk of malnutrition (i.e. using MUST) but only 34% screened outpatients Dietitians most likely to systematically collect nutritional data of patients (64%), had the highest rates of being trained (80%) and were completely confident (70%) in providing nutritional advice to cancer patients Doctors (88%) and nurses (96%) discussed nutritional concerns with patients but few were completely confident in giving advice (doctors 2%, nurses 4%) and most were unaware of relevant nutritional guidelines (doctors 74%, nurses 70%) There is scope to provide additional training for all professional groups to provide consistency in clinical practice

Work stream 5 – commercial sector and industry Aim To support collaborative cancer and nutrition research with the commercial sector for the benefit of patients and the public Principal achievements A background paper has been drafted which explores the considerations of engaging in collaborative nutrition research with the commercial sector.

The future – Phase III Building the research framework and shared infrastructure Working together to address the knowledge gaps in nutritional care of people with cancer Conducting research to build the evidence base in a standardised, quality-assured way Further engagement of patients, public, researchers, commercial and clinical practice communities

Research opportunities Lifestyle, diet and physical activity/exercise interventions to improve the resilience and outcomes of patients with cancer (initial treatment, survivorship, palliative care) Interventions to improve the delivery and efficacy of nutritional support to those receiving cancer care Trials to determine how differences in body composition (sarcopenia/cachexia and excess adiposity), fitness and nutritional state influence response to treatment First in man and efficacy studies of novel nutritional therapeutic agents (e.g. turmeric, n3 long chain fatty acids) Investigations in humans to better understand the biological processes underpinning the links between nutrition and activity exposures to health and disease outcomes 5 main themes of nutrition research in the area of cancer and nutrition. These are based on recommendations and guidance from funders, researchers and clinicians.

Questions? Thank you www.cancerandnutrition.nihr.ac.uk/