Ensuring the Patient Voice in Research – Irish Initiative Shows the Way
The involvement of cancer patients’ and carers’ voices in health and social care research is gradually but steadily evolving. Last month we were pleased to feature this article covering the EU Trio Council Presidency recommendations recognising the imperative of involving patients in research. In order to move from recommendations to reality, and to achieve maximum outputs from patient-research partnerships, best practices, methodologies and training needs still need to be concretised. As such, this month we are happy to report on an Irish study that is well on its way to elucidating how these partnerships are indeed becoming fruitful reality.
The study ‘Patient Voice in Cancer Research’ (PVCR) began in April 2016. In their recently published paper, Prof Amanda McCann from the University College Dublin (UCD) and her colleagues, present the initiative and how it is paving the way for the interactions between cancer researchers and patients in Ireland. It explores how the study aims to identify the questions and needs that most matter to people living with a cancer diagnosis and to those most likely to improve the relevance of cancer research.
The initiative has been built over time with the team highlighting the following grounds for success:
- The generation of successful long-term relationships between patients and researchers
- The shaping of an inclusive environment governed by mutual respect along with time and flexibility
- The authors of the paper underline that ‘the work is grounded in collegiality, and a good sense of humour and friendship undoubtedly helps.’
- The concept of engaging patients in research should not be viewed as a ‘tick-box’ exercise. It needs to be meaningful and active. For this to happen, all partners involved need to recognise the benefit
- Patients involved in the PVCR project highlighted the importance of patients steering the project and having their voice and experience truly heard.
Initiatives and the DiCE Research Mission
As per the above, DiCE looks to share any initiative relevant to our Research Mission and become a part of them where possible. As per our Mission this is “To ensure that the patient’s and respective carer’s voice is heard and acted upon in research decision making processes and throughout the cycle of digestive cancer-related research projects, and that research knowledge and outcomes are shared to interested stakeholders to make a positive difference to people’s lives.”
Do you have a research project you would like to share with us? Please contact us.