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

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

An Entity of Type : schema:ScholarlyArticle, within Data Space : wasabi.inria.fr associated with source document(s)

Attributes	Values
type	Academic Article research paper schema:ScholarlyArticle
isDefinedBy	Covid-on-the-Web dataset
has title	Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects
Creator	Cassidy, Jennifer Davies, Carmel De Brún, Aoife Donnelly, Sarah Dorris, Emma Dunne, Nikki Egan, Karen Foley, Michel Galvin, Mary Harkin, Mary Killilea, Martha Kroll, Thilo Lacey, Vanessa Lambert, Veronica Mcloughlin, Sarah Mitchell, Derick Murphy, Edel Nicholson, Emma Ní Shé, Éidín O'donnell, Deirdre O'philbin, Laura
Source	Medline; PMC
abstract	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.
has issue date	2020-08-03(xsd:dateTime)
bibo:doi	10.1186/s40900-020-00220-7
bibo:pmid	32765898
has license	cc-by
sha1sum (hex)	2d313d306363f21d54cf8442f2163ab831af5649
schema:url	https://doi.org/10.1186/s40900-020-00220-7
resource representing a document's title	Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects
has PubMed Central identifier	PMC7396939
has PubMed identifier	32765898
schema:publication	Res Involv Engagem
resource representing a document's body	covid:2d313d306363f21d54cf8442f2163ab831af5649#body_text
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