JING 2016 Public AND PATIENT Involvement in Research HOSTED BY: Jim ELLIOTT and Stephen Thomas AND MEMBERS OF OUR INVOLVEMENT NETWORK

CANCER RESEARCH UK – OUR COMMITMENT. “we are committed to finding new ways to work alongside our supporters and the public, making sure that every person who wants to join the fight can get involved”

INVOLVEMENT ENGAGEMENT PARTICIPATION Being part of a Trial Steering Group Advising on content of research study Contributing to policy Being informed of developments Being part of patient groups Being a subject of a trial Contributing samples to bio banking Participation in research trials is important without patients who are willing to contribute, new drugs, methods and therapies would not progress. Engagement is what we are doing now drawing your attention to the work that we are doing. A two way conversation. This will be enhanced by the speakers that follow. Involvement is where the work is done by or with the patient/carer. (INVOLE definition) Friday, November 16, 2018 View <Headers and Footers> to alter this text

DON’T TAKE MY WORD FOR IT! “Involving People believes that 'active' involvement of members of the public leads to research that is more relevant, more reliable and more likely to be used to improve health and social care services.”   http://www.wales.nhs.uk “…public involvement in research should be the rule not the exception. It is fundamental to ensure high quality research that brings real benefits for patients, the public and the NHS.” Professor Dame Sally Davies, Chief Medical Officer and Chief Scientist for the Department of Health

Public and patient involvement at cr-uk: 2014: the Patient Involvement and Communications team was set up. They work across the charity in order to enable people affected by cancer to be involved in the charities work, and support people to involve patient (e.g. by providing training, helping run events etc). PPI in CRUK is relevant to all of Research Strategy and Funding, it is increasingly going to be a priority – for example, all applications to the CRUK Grand Challenge award must include a patient co-applicant; many CRUK funding committees have patient reps CRUK are keen to support researchers with their PPI, including supporting them to develop their knowledge, skills, and to find people to involve. So what has CRUK done about this? Public and patient involvement at cr-uk: Launch of our Patient Engagement strategy in 2014 – this was a major event in the charity and marked a real commitment to engagement and involvement 2014 the Patient Involvement and Communications team was set up. They work across the charity in order to enable people affected by cancer to be involved in the charities work, and support people to involve patient (e.g. by providing training, helping run events etc). Patient involvement is a high priority for CRUK – we have already seen a huge shift in the charity over the last year, with a large volume of PPI work being undertaken. We anticipate this to keep on increasing. PPI in CRUK covers all of Research Strategy and Funding, it is increasingly going to be a priority – for example, all applications to the CRUK Grand Challenge award must include a patient co-applicant; many CRUK funding committees have patient reps CRUK are keen to support researchers with their PPI, including supporting them to develop their knowledge, skills, and to find people to involve.

PUBLIC INVOLVEMENT AT CANCER RESEARCH UK Speaking at events Attending focus groups to contribute cancer experience Provide a connection between other organisations work and CRUK Join up engagement and involvement in CRUK Centres Help staff and researchers understand public involvement Help the public to understand the role of public involvement in research Completing surveys Enable staff to work with people affected by cancer Networking and promoting events Being part of the Involvement Network! Attending/ facilitating workshops and meetings Consultation on information

RESEARCHER feedback… We have worked with staff across our Strategy and Research Funding teams to develop PPI opportunities for our researchers. Here’s what some of them have fed-back to us…. I came out the other end with more of a consumer perspective and better equipped to describe the aims of my research in an understandable way. (Following consultation with patients at ‘Dragon’s Den’ event) Patient involvement was the most valuable part of the workshops for me, (it’s the) First time I have ever discussed my project with patients - great to get their perspective. (following CRUK and NAEDI research proposal development workshop) Having a mix of more experienced and less experienced patient reps helped to give us a mix of perspectives from their real life experiences. They really helped to bring us back to the fact that we are trying work to stop people from becoming cancer patients! (Following CRUK prevention funding workshop) People affected by cancer helped us to write and amend the proposal, and were able to help us show the support for the work from patients. Funding was awarded. (CM-path proposal development team)

Patient and Public Involvement

Thank you cruk.org