Presentation to NIHR and Charities Consortium for Hospice and Community Research Conference
On 19th April, Paul Charlton spoke to delegates of the NIHR Charities Consortium for Hospice and Community Research Conference about his personal experiences and about the role patient and public involvement plays in research.
Paul’s slides can be viewed here.
Click here for Paul’s report of the presentation.
New opportunities for patients and public to learn about engagement with the health sector:
NHS England is offering two online courses for patient and public volunteers. The deadline for applications is 24th February 2017, find out more here.
Presentation to NCRI Breast Clinical Studies Group on 23rd November 2016
On 23rd November, Hilary Stobart spoke to the Breast CSG about the Cancer and Nutrition NIHR infrastructure collaboration, highlighting key findings from Phase One and reporting on work stream activities ongoing in the current Phase Two. Following Hilary’s presentation, Dr Ellen Copson, a Cancer Research UK Associate Professor in Medical Oncology within Medicine at the University of Southampton, spoke to the CSG about her research into body composition and breast cancer outcomes. Dr Copson also spoke about a future research study on diet, lifestyle, physical activity and breast cancer being led by the University of Southampton with many partners from around the UK.
Presentation to NCRI Psychosocial Oncology and Survivorship Clinical Studies Groups in June 2016
On 8th June, Elspeth Banks spoke to members of the NCRI Psychosocial Oncology and Survivorship CSG about the Cancer and Nutrition NIHR infrastructure collaboration. A short report of the discussions surrounding this presentation can be found here: NCRI Psychosocial Oncology and Survivorship CSG presentation report
Letter of support for collaboration from Richard Stephens, Chair of NCRI Consumer Forum
In April 2016, the Cancer and Nutrition NIHR infrastructure collaboration received a formal letter of endorsement from the Chair of the NCRI Consumer Forum. The members of this group are mostly cancer survivors, as well as carers, including parents of children with cancer. The group shares our commitment to establishing a firmer evidence base for the links between cancer and nutrition, in order to support clinicians to provide reliable and consistent advice to patients.
A copy of the letter can be downloaded here: NCRI Consumer Forum letter of support
Presentation to NCRI Consumer Forum in March 2016
On 22 March, Elspeth Banks, a member of Work Stream 1: Information provision and communication with cancer patients and the public spoke to members of the NCRI Consumer Forum about the Cancer and Nutrition NIHR infrastructure collaboration. A short report of this meeting can be found here: NCRI Consumer Forum Report
A copy of the Powerpoint presentation can be seen here: CSG Presentation pack – January 2016.
Workshop event on 2 February 2016
On Tuesday 2 February 2016, the collaboration organised a workshop to kickstart the activities of Phase Two – the setting up and development of the five work streams identified in Phase One. The event was attended by around 40 people working in the fields of cancer and nutrition from across the UK, and included researchers, specialist oncology dietitians, patient representatives, public health experts, statisticians, nutritionists, epidemiologists, and others identified as important contributors to the collaboration’s work.
You can download the Executive Summary and a full report of the day here: Finalworkshopreport, including a list of participants. If you have any questions about the workshop, or wish to add your name to the growing list of people involved in this collaboration, send an email to: firstname.lastname@example.org
Dragons’ Den 2014 NCRI Cancer conference
In September 2014, we took part in the Dragons’ Den session at the NCRI Cancer conference. Hosted by the NCRI Consumer Liaison Group, the session enables researchers to get feedback on their research from consumers with a research interest who either sit on NCRI Clinical Studies Groups (CSGs), funding committees or are members of the Independent Cancer Patients Voice (ICPV). We asked consumers how we should focus the initiative and how best to actively engage patients in the initiative. More details on the Dragons’ Den session can be found in the full report of Phase One.
Patient experience survey
Based on suggestions made by consumers at the Dragons’ Den, we conducted a survey of patient experiences of nutritional care in cancer to find out about about perceptions of quality and adequacy of nutritional care and what the biggest gaps in cancer and nutrition care and research are. The survey sought to answer the following questions:
- Are patients being given consistent, evidence-based advice?
- What other nutritional support, advice and care would patients like to receive?
- What are the major gaps in service provision at diagnosis, during treatment and after treatment?
A total of 96 patients responded to the questionnaire. A summary of the findings are available in the full report of Phase One. We are very grateful to all of the patients and carers who gave their time to participate.