Welcome to our first newsletter! 
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Welcome to our new newsletter! 

Each quarter we’ll be sending you an update on what’s happening across the collaboration; letting you know about work stream progress, news of events, and any publications that may be of interest.

For more information about what we are up to, visit the Cancer and Nutrition NIHR infrastructure collaboration website. 

Chair's message

The Cancer and Nutrition NIHR infrastructure collaboration is now preparing for the next phase of its agenda. So far we have focused on scoping the cancer and nutrition landscape as well as setting up and consolidating four work streams in identified areas of need.
The work streams are: 
  1. Information provision and communication with cancer patients and the public; 
  2. Creating a skilled community of practice; 
  3. Identifying major research priorities; and 
  4. Characterising nutritional status in cancer (“The Toolkit”)
A fifth work stream, 'Engagement with the commercial sector', is under development. Moving forwards we will be concerned with further delivery of our strategic aims, and completion of activities such as the toolkit for nutritional assessment of cancer patients.

As we prepare for this next phase we are looking to consolidate the Collaboration within the wider NIHR infrastructure, to ensure the embedding of nutritional considerations within cancer research at all stages of the research pathway.

Professor Alan Jackson, Chair of the Cancer and Nutrition NIHR infrastructure collaboration
Clinicians' Survey

In July 2016, we released a survey to explore what the care pathway currently looks like for cancer patients in relation to nutritional screening, assessment and care, and to explore where the training gaps for clinicians may lie. It was distributed via professional groups and by word of mouth to dietitians, doctors, nurses, and other healthcare professionals.

The survey closed at the end of October with over 500 responses in total. A working group with representatives from both the Toolkit and Professionals work streams has been set up to focus on the data analysis. The Executive Summary of the report was presented to the Steering Committee in December. In the coming months, the group will be preparing a manuscript for publication.

There are many interesting findings from the survey, for example: 92% of doctors who responded (n= 108) and 96% of nurse respondents (n=182) discuss nutrition with cancer patients, but only 22% of these nurses and 15% of the doctors had received training 
on the nutritional care of people with cancer. The findings from the survey will have implications for the future of the Collaboration’s focus and will help shape the work plan going forward.

The Professionals work stream is working to circulate the survey to GPs and Practice Nurses to be able to compare the results between primary and secondary care settings. 

Thank you to all of the organisations that helped to distribute the survey, and to everyone who circulated it amongst colleagues.
NIHR Cancer and Nutrition Charity Consortium workshops

On 5th September, MRC-T and NOCRI hosted a Cancer and Nutrition workshop—this brought together 21 charities which support and fund health research to discuss how to join up cancer and nutrition research in the UK for the benefit of cancer patients. A patient and carer panel discussed the availability and provision of nutritional advice, and highlighted the importance of feeling in control of their cancer treatment.

The long-term aim of this workshop is to form a charity funding consortium to prioritise and support the delivery of nutritional research, helping to fill the current evidence gap.

You can read the workshop report if you would like to find out more.

A second workshop was held on 7th February 2017, to take the next steps in setting up the consortium. Over 40 people attended, including representatives from 15 charities. Issues surrounding how we can collaborate to improve nutritional guidance for cancer patients and enabling research were explored. Overall the charities were positive towards the opportunity to form an alliance and we look forward to taking this venture further with them. 

Patient and Public Involvement

Patients and the public are at the heart of the work of the collaboration. We think it is important that they are involved in everything that we do to ensure the work of the collaboration meets their needs.

We now have two patient and public representatives on each of our work streams, as well as representatives on the 'Information provision and communication with cancer patients and the public' work stream.

Lesley Turner leads this work stream and has successfully raised awareness of the collaboration with patients and the public this year. Many members of this work stream also sit on NCRI Clinical Study Groups (CSGs) and have been able to raise awareness via those channels.

In the video below, Lesley speaks about her own experiences in trying to find trustworthy nutritional advice when undergoing treatment for cancer.
Work stream members

Across our four active work streams, we have a wide variety of experts from the fields of cancer and nutrition, who are working with us to drive the collaboration’s agenda. Full member lists can be found on the Cancer and Nutrition NIHR infrastructure collaboration website.
Collaboration management

Millie Barrett joined the Cancer and Nutrition NIHR infrastructure collaboration as Project Manager in January 2016, and Fiona Davey joined as Assistant Project Manager in April 2016. Both Millie and Fiona are based in the NIHR Southampton Biomedical Research Centre and are both graduates of the Public Health MSc at the University of Southampton.

Millie has a background in nutrition with a BSc in Nutritional Therapy from the University of Middlesex, and also followed the Nutrition pathway of the Public Health MSc. Fiona has previously worked at NIHR Evaluation, Trials and Studies Coordinating Centre at the University of Southampton as a Research Fellow in the Public Health Research Programme.
Creating a skilled community of practice

The Professionals work stream is co-chaired by Ramsey Cutress, Associate Professor in Breast Surgery at the University of Southampton and Professor Jane Murphy, Professor of Human Nutrition at Bournemouth University. It is supported by Professor Martin Wiseman, Medical and Scientific Adviser at the World Cancer Research Fund.

This work stream has been working on bringing together a body of authoritative guidance on nutrition for cancer patients and their clinicians, with the aim of providing a much-needed ‘fit for purpose’ resource in the future (see below).

The Professionals work stream is also involved in the Phase 2 Clinicians’ survey and is currently looking at extending it to GPs - who are increasingly dealing with people at different stages of their cancer pathway.

Authoritative nutritional guidance for patients and clinicians 

Patients diagnosed with cancer often experience nutritional difficulties ranging from weight loss and nausea, to difficulty chewing or swallowing, and in some cases, weight gain. We know that often patients do not receive consistent or evidence-based advice about how to cope with these symptoms. The Professionals work stream has been compiling a body of nutritional advice and guidance for people affected by cancer, which we hope to develop into an online resource that clinicians, patients and their carers can use. This activity will also help to identify gaps in the available guidance, potentially leading to the development of research projects.

Toolkit for nutritional assessment

The nutritional status of a person diagnosed with cancer can be an important prognostic indicator. However, unless they have been referred to a dietetic service, there is often limited assessment of nutritional status – even including height and weight. To serve the research agenda of this collaboration, standardised, quality-assured procedures for measuring nutritional status in routine care are needed to ensure national consistency in the collection of data.

A Toolkit of nutritional screening and assessment is being developed to provide this consistency. The Toolkit will recommend appropriate assessments to use for cancer patients among routine care and for clinical research purposes.

The leader of this work stream is Dr Bernard Corfe, a senior lecturer at the University of Sheffield (and also representing the Nutrition Society). Bernard is supported by Dr Steve Wootton, Associate Professor in Nutrition at the University of Southampton. 

Identifying major research priorities

The Research work stream brings together some of the top researchers in cancer, nutrition and physical activity from across the UK. They are working together to build a matrix of research priorities in cancer and nutrition, in order to foster collaborative and interdisciplinary grant applications and explore different funding models involving the commercial sector and charities.

In order to encompass the broad range of research stages and the whole cancer process from pre-diagnosis to long-term survivorship, the research work stream has been broken down into three sub-groups with each one focusing on a discrete part of the cancer research process. The sub-groups are at the early stages of consolidating their membership and remit. Watch this space!
Our mailing address is:
Cancer and Nutrition NIHR infrastructure collaboration
Mailpoint 113, West Wing
Southampton General Hospital
Tremona Road
SO16 6YD

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Cancer and Nutrition NIHR infrastructure collaboration · Southampton Biomedical Research Centre, Mailpoint 113 West Wing · Southampton General Hospital, Tremona Road · Southampton, Hampshire SO16 6YD · USA

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