A major aim of our research strategy is to support and enable patients to influence and shape bowel cancer research. To fulfil this commitment we have not only established lay review in our own research-funding decisions but we have also established a Research Network.
The Research Network is a virtual network of patients and families members who wish to get involved in, and influence bowel cancer research. This will ensure that research is focussed on the most important outcomes for patients, while minimising and removing barriers that would prevent patients from taking part.
Why is it important to involve patients in research?
We know that by speaking to people with lived experience of bowel cancer, researchers can improve their research ensuring, from the outset, it is focussed on outcomes and issues that are most important to patients. As a research funder we expect anyone who applies to us for a grant to have spoken to patients when considering the design of their project and, where appropriate, include patients throughout its lifetime to monitor that project.
We strongly suggest that you seek patient input as early as possible in the research design process and think about how they can be involved as the research progresses. We are happy to help you consult the Research Network to get feedback – this may be as simple as asking them to complete a questionnaire or answer a few questions to help set priorities, or you may wish to do something more involved such as a workshop. Get in touch with us on email@example.com to see how we can help you involve the Research network in your research.
What can the Research network help with?
The members of our Research Network can help and become involved in your research in a number of different ways. Examples include (but are not limited to):
- Reading plain English summaries from grant applications or research communications
- Priority setting exercises
- Participating in research project steering groups
- Providing feedback on research grant proposals and clinical trial protocols
- Reviewing research participant information
- Co-designing research projects
How do I get in touch with the network?
If you would like to involve Network members in your research or request their help with another activity, please complete our short application form and email it to firstname.lastname@example.org. If you would like some advice or further information prior to contacting the network, please feel free to get in touch with any questions you might have (again at email@example.com) and we will do our best to help.
Any information you send us will be treated in confidence by the Charity and by Research Network Members.
Joining the Research Network
If you are a patient, or close family member of someone who has had bowel cancer and you would like to become involved please complete our opt-in form and make sure to tick the “Research” box. We will advertise any opportunities to join the network, when they arise, via our e-newsletter and social media channels.
- Cancer Research UK have created a toolkit for researchers with lots of resources to help you involve patients in your work.
- Sense About Science have put together a booklet with lots of tips to help with communicating your work to patients and the public.
- The INVOLVE website also has lots of resources and guides to involving patients and the public in different kinds of research.
- The NIHR have created a set of Standards for Public Involvement. You can access the Standards as well as resources to help you think about patient involvement in your research here