Breast Cancer Now’s clear ambition is that by 2050, everyone who develops breast cancer will live – and live well. To achieve this, we work across many different issues that affect people with, or at risk of developing, breast cancer, and we represent their views and experiences.
Our Health Advocacy team works on the ‘front-line’ with patients and their hospital staff to help them improve breast cancer services - to identify issues that are affecting patients and their families and carers.
Our Policy team use this knowledge to influence national policy to improve the care and experience of breast cancer patients, by influencing Ministers in the Department of Health and working closely with the various health bodies in the UK.
Together we decided to set up the Insight and Experience Panel, to provide a formal channel for Breast Cancer Now to ask for patients’ views on a wide range of issues, and as another way of engaging and working together with our supporters.
Role of the panel
The role of the panel is to provide a patient/ carer expert panel who can be approached regularly and as needed, to provide views and experiences on issues of importance in breast cancer.
As a member of this panel, some of the opportunities you may be offered to take part in include:
- Providing feedback on our health information publications
- Giving insight on patient priorities in breast cancer care and treatment so we can influence in the areas that matter most to you, including improving services and ensuring access to treatments
- Telling us your story on various aspects of treatment or side-effects to support and evidence our campaigns, whether to pharmaceutical companies or the government
- Becoming a member of a public committee, such as NICE guideline update committees
- Giving your time and expertise to support the work of the wider charity, for example speaking as patient experts on conference panel debates, or sharing your story to back up our fundraising pitches to corporate donors
The main aim of the Insight and Experience Panel is to ensure that all the charity’s work is properly informed by patients and people affected by breast cancer.
Membership of the Insight and Experience Panel is open to anyone who has been affected by breast cancer and has a desire to help us shape and improve the work we do. Your feedback and involvement ensures that we’re acting on the issues most important to those affected by breast cancer and incorporating your perspective.
You can choose to opt out of membership at any time by emailing us at Insight.Group@breastcancernow.org.
Members of the Insight Panel are expected to abide by the seven principles for the conduct of public life as recommended by the Nolan Committee which are:
Breast Cancer Now reserves the right to remove any member or change these terms of membership at any time, in light of these expectations, the purpose of the panel and the overall aims of the charity.
We get in touch with the panel once or twice a month by email. Opportunities for involvement and representation may come from a range of Breast Cancer Now teams, or external sources such as NHS England. It will always be clear that the request is coming via the Insight and Experience Panel.
It may be the case that not all the opportunities will be directly relevant to you, but we will make clear any specific criteria so you know which ones are relevant.
The whole panel will be emailed with each opportunity or request. It is then up to each individual, on a case-by-case basis, to decide whether or not they would like or are able to get involved.
Breast Cancer Now may reimburse necessary expenses where the opportunity is internal to Breast Cancer Now. This will be in accordance with Breast Cancer Now’s expenses policy and will be explained with the request where relevant. The policy extends to necessary and reasonable travel, accommodation and subsistence costs incurred on the business of the charity.
The panel may be asked to provide feedback to help us evaluate how the Insight and Experience Panel is working. We also welcome your comments or questions at any time.
From time to time the emails may contain information that should remain confidential, for example in advance of public campaigns we are working on. Our commitment is to inform you where this is the case. Membership of the Insight and Experience Panel presumes your commitment to maintain this confidentiality.
Terms of reference: November 2018