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    Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects

    Ní Shé, Éidín and Cassidy, Jennifer and Davies, Carmel and De Brún, Aoife and Donnelly, Sarah and Dorris, Emma and Dunne, Nikki and Egan, Karen and Foley, Michel and Galvin, Mary and Harkin, Mary and Killilea, Martha and Kroll, Thilo and Lacey, Vanessa and Lambert, Veronica and McLoughlin, Sarah and Mitchell, Derick and Murphy, Edel and Mwendwa, Purity and Nicholson, Emma and O’Donnell, Deirdre and O’Philbin, Laura (2020) Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects. Research Involvement and Engagement, 6 (1). pp. 1-10. ISSN 2056-7529

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    Background: The University College Dublin (UCD) Public and Patient Invovlement (PPI) ignite program is focused on embedding PPI in health and social care related research, education and training, professional practice and administration. During a PPI knowledge sharing event challenges were noted during the pre-commencement stage of research projects. This stage includes the time before a research projects/partnership starts or when funding is being applied for. As a response, we agreed there was a need to spend time developing a values-based approach to be used from the pre-commencement of PPI projects and partnerships. Values are deeply held ideals that people consider to be important. They are vital in shaping our attitudes and motivating our choices and behaviours. Methods: Using independent facilitators, we invited a diverse group of participants to a full-day workshop in February. During the workshop, the concept of a values statement and values-based approaches was introduced. The group via a majority consensus, agreed on a core set of values and a shared understanding of them. After the workshop, a draft was shared with participants for further comment and final agreement. Results: The workshop had 22 people representing experts by experience, PPI charity partners, funders, academics and national PPI Ignite partners. The group via consensus identified four values of respect, openness, reciprocity and flexibility for the pre-commencement stage. A frequently reported experience of PPI partners was that some felt that the pre-commencement activities appeared at times like a performance; an act that had to be completed in order to move to the next stage rather than a genuine interest in a mutually beneficial partnership. Being open and transparent with all invovled that the funding application may not be successful was stressed. Another important feature related to 'openness' was the 'spaces' and 'places' in which meetings between partners could occur in an accessible and equitable way. The issue of 'space' is particularly critical for the involvement of seldom heard groups. The benefits of the research are often clear for academics, but for PPI partners, these are often less certain. To achieve reciprocity, academic and PPI partners need to engage in a timely, repeated and transparent dialogue to achieve beneficial outcomes for all stakeholders. Being open to new inputs and differing modes of knowledge and ideas was also stressed. For some, this will require a change in attitudes and behaviours and should result in more collective decision making. Several areas were identified using the four values. Conclusions: This work via majority consensus identified four values of respect, openness, reciprocity, and flexibility for the pre-commencement stage. These values should be used to support inclusive, effective and collective PPI across all stages of involvement. We hope this work will stimulate further action in this area. In particular, we would welcome the evaluation of these values involving diverse PPI groups.

    Item Type: Article
    Keywords: Co-design; Pre-commencement stage; Public and patient involvement; Values;
    Academic Unit: Faculty of Social Sciences > Design Innovation
    Item ID: 15763
    Identification Number:
    Depositing User: Mary Galvin
    Date Deposited: 04 Apr 2022 14:23
    Journal or Publication Title: Research Involvement and Engagement
    Publisher: BMC
    Refereed: Yes
    Use Licence: This item is available under a Creative Commons Attribution Non Commercial Share Alike Licence (CC BY-NC-SA). Details of this licence are available here

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