“Could you give us an idea on what we are all doing here?” the Patient Voice in Cancer Research (PVCR) starting the journey of involvement in Ireland

Abstract

Background: Involving patients and their carers in research has become more common, as funders demand evidence of involvement. The ‘Patient Voice in Cancer Research’ (PVCR) is an initiative led by University College Dublin (UCD) in Ireland. It encourages and enables people affected by cancer, and their families to become involved in shaping and informing the future of cancer research across the island of Ireland. Its aim is to identify the questions and needs that matter most to (i) people living with a cancer diagnosis, and (ii) those most likely to improve the relevance of cancer research. The initiative commenced in April 2016. Methods: This paper presents a reflective case study of our journey thus far. We outline three key stages of the initiative and share what we have learnt. At the core of PVCR, is a focus on building long-term relationships. Results: We have developed over time an inclusive initiative that is built on trust and respect for everyone’s contributions. This work is grounded on collegiality, mixed with a good sense of humour and friendship. Conclusion: The development of PVCR has taken time and investment. The benefits and impact of undertaking this work have been immensely rewarding and now require significant focus as we enhance cancer research across the island of Ireland.