Abstract
BackgroundInvolving 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.MethodsThis 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.ResultsWe 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.ConclusionThe 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.
Highlights
Involving patients and their carers in research has become more common, as funders demand evidence of involvement
University College Dublin (UCD) Conway established a public engagement programme to advance our objectives under this goal and give visibility of our research programmes to the public
At the UCD Conway Institute, we believe that our research is more relevant when stakeholders are actively engaged in the process
Summary
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. There is a diverse and growing literature capturing the various ways of undertaking public and patient involvement (PPI) in health and social care research [1, 2, 3, 4]. There is evidence of changes within health charity organisations of growing and enabling public and patient involvement within their own structures [5, 6, 7].
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