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Health and Well-being
The Patient Voice in Cancer Research (PVCR)
Project synopsis
PVCR is an initiative to actively engage cancer patients, cancer researchers and other interested parties (patient advocates, families, carers and health care professionals, policy makers) in discussions and decision making processes which positively impact on cancer research, cancer treatment and outcomes for patients.
The PVCR helps match cancer researchers and patients to activities that best suit their mutual interests in cancer research and/or a specific type of cancer. We also facilitate education and training opportunities to improve the skills and knowledge of both the patients and researchers in a two-way dialogue about cancer research.
The goals of the project included:
1. To build connections between patients and cancer researchers.
2. To facilitate a two-way dialogue between patients and cancer researchers ensuring mutual trust, respect and understanding between the patient and the researcher.
3. To provide education and training for patients and cancer researchers to (i) improve communication between both parties ensuring that cancer research is seen as a joint venture to overcome the disease, (ii) to improve the understanding of cancer research in a concise and clear message to the wider community.
4. Inform policy and healthcare of research needs that will benefit cancer patients.
Engaged Research Partners
- Patients/ patient advocates
- High risk patients “Previvor”
- Survivors
- Family members
- Members of the medical and nursing community
- Cancer charities/ employees
- Cancer researchers
- Any member of the public with an interest in cancer research
Engagement method or activity
- Co-design of Terms of Reference, Mission statement, PVCR outputs and bespoke workshops.
- Tours of the Cancer Research Facilities in the UCD Conway Institute and Systems Biology Ireland.
- Patient Voice in Cancer Research Workshop events in the April and September of each year. Five such workshops have been arranged to date since April 2016 in topics suggested by patient consultants on the PVCR committee.
Project outputs and outcomes
The outputs are as follows:
- The PVCR Committee was established in 2016. It consists of ~30 members drawn from the patient and cancer research communities with the remit to develop PPI within PVCR.
- Since 2016, five workshops have been hosted by PVCR in topics suggested by the patient consultants.
The outcomes are as follows:
- Patients will form part of the steering group committee and contribute to the strategic development of the UCD Centre in Translational Oncology.
- Cancer survivors now form part of the Irish Association for Cancer Research (IACR) Council and input on all aspects of the running of this all-Ireland Annual Conference.
Longer term anticipated areas for Impact
- Policy & Public Service
- Societal Engagement
- Health & Wellbeing
- New knowledge
Higher Education Institute:
UNIVERSITY COLLEGE DUBLIN UCD
Funding Source:
Mater Foundation, Breast Predict, UCD Conway Institute and the UCD School of Medicine (SoM)
Academic Contact:
Amanda McCann (UCD)
amanda.mccann@ucd.ie
