Is Co-production Just Really Good PPI? Making Sense of Patient and Public Involvement and Co-production Networks

Williams, Oli; Robert, Glenn; Martin, Graham; Hanna, Esmée; O’Hara, Jane

doi:10.1007/978-3-030-40889-3_10

Cited by 41 publications

(47 citation statements)

References 38 publications

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“…All co-authors then discussed and agreed these themes. Active analysis (13, 14) involved the collaboration of the research team with the Facebook participants to co-produce research findings (10, 15). As a first step we generated, as a team, a series of follow-up questions encapsulating the key themes identified by the team in phase one.…”

Section: Methodsmentioning

confidence: 99%

“…Participants were also invited to comment on themes and to contribute any further themes or ideas they felt important to living with smell and taste disturbance and Covid-19. All efforts were made co-produce this research (10,15). On-line discussions between the CK, DBW and contributors to the group were used to check each of the themes with members, and in each instance to offer them the opportunity to discuss, refine or correct any misunderstandings.…”

Section: Study Design-settingmentioning

confidence: 99%

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Altered smell and taste: anosmia, parosmia and the impact of long Covid-19

Burges

Campbell

Hopkins

et al. 2020

Preprint

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BackgroundQualitative olfactory (smell) dysfunctions are a common side effect of post-viral illness and known to impact on quality of life and health status. Evidence is emerging that taste and smell loss are common symptoms of Covid-19 that may emerge and persist long after initial infection. The aim of the present study was to document the impact of post Covid-19 alterations to taste and smell.MethodsWe conducted passive and active thematic analysis of user-generated text from 9000 users of the AbScent Covid-19 Smell and Taste Loss moderated Facebook support group from March 24 to 30th September 2020.ResultsParticipants reported difficulty understanding, explaining and managing altered taste and smell; a lack of interpersonal and professional explanation or support; altered eating; appetite loss, weight change; loss of pleasure in food, eating and social engagement; altered intimacy and an altered relationship to self and others.ConclusionsOur findings suggest altered taste and smell with Covid-19 lead to a severe disruption to daily living that impacts on psychological well-being and health. Moreover, this impact is broad, spanning flavour perception; desire and ability to eat and prepare food; weight gain, loss and nutritional sufficiency; emotional wellbeing; professional practice; intimacy; social bonding and erosion of people’s very sense of reality. Our findings should inform the training, assessment and treatment practices of health care professionals working with long Covid.

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Section: Methodsmentioning

confidence: 99%

Section: Study Design-settingmentioning

confidence: 99%

Altered smell and taste: anosmia, parosmia and the impact of long Covid-19

Burges

Campbell

Hopkins

et al. 2020

Preprint

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“…It should take into consideration (1) the egalitarian rationale for co-production to further the rights and needs of patients, service users and marginalised citizens, (2) the wider structural issues of academia that impinge upon co-production in research, and (3) over 40 years of politically engaged research in this area. We are all involved in such research [3,15,28,44,[55][56][57][58][59][60][61][62] and to that end, conducting work that Oliver et al [2] appear to assume is currently absent.…”

Section: What Constitutes the Dark Side Of Co-production? Contemplatimentioning

confidence: 99%

Lost in the shadows: reflections on the dark side of co-production

Williams

Sarre

Papoulias

et al. 2020

Health Res Policy Sys

Self Cite

207

246

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This article is a response to Oliver et al.'s Commentary 'The dark side of coproduction: do the costs outweigh the benefits for health research?' recently published in Health Research Policy and Systems (2019, 17:33). The original commentary raises some important questions about how and when to co-produce health research, including highlighting various professional costs to those involved. However, we identify four related limitations in their inquiry, as follows: (1) the adoption of a problematically expansive definition of co-production that fails to acknowledge key features that distinguish co-production from broader collaboration; (2) a strong focus on technocratic rationales for co-producing research and a relative neglect of democratic rationales; (3) the transposition of legitimate concerns relating to collaboration between researchers and practitioners onto work with patients, service users and marginalised citizens; and (4) the presentation of bad practice as an inherent flaw, or indeed 'dark side', of co-production without attending to the corrupting influence of contextual factors within academic research that facilitate and even promote such malpractice. The Commentary's limitations can be seen to reflect the contemporary use of the term 'co-production' more broadly. We describe this phenomenon as 'cobiquity'an apparent appetite for participatory research practice and increased emphasis on partnership working, in combination with the related emergence of a plethora of 'co' words, promoting a conflation of meanings and practices from different collaborative traditions. This phenomenon commonly leads to a misappropriation of the term 'co-production'. Our main motivation is to address this imprecision and the detrimental impact it has on efforts to enable co-production with marginalised and disadvantaged groups. We conclude that Oliver et al. stray too close to 'the problem' of 'co-production' seeing only the dark side rather than what is casting the shadows. We warn against such a restricted view and argue for greater scrutiny of the structural factors that largely explain academia's failure to accommodate and promote the egalitarian and utilitarian potential of co-produced research.

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“…This includes PPI approaches used at any point in the research cycle that involves patients and/or the public. The terminology used in PPI continues to evolve and remains somewhat contested, and there are variations in how the terms are used internationally 30 . Therefore, studies that use PPI principles but describe this using slightly different terms (e.g.…”

Section: Protocolmentioning

confidence: 99%

Patient and Public Involvement (PPI) in preclinical research: A scoping review protocol

et al. 2021

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Introduction: Patient and public involvement (PPI) aims to improve the quality, relevance, and appropriateness of research and ensure that it meets the needs and expectations of those affected by particular conditions to the greatest possible degree. The evidence base for the positive impact of PPI on clinical research continues to grow, but the role of PPI in preclinical research (an umbrella term encompassing ‘basic’, ‘fundamental’, ‘translational’ or ‘lab-based’ research) remains limited. As funding bodies and policymakers continue to increase emphasis on the relevance of PPI to preclinical research, it is timely to map the PPI literature to support preclinical researchers involving the public, patients, or other service users in their research. Therefore, the aim of this scoping review is to explore the literature on patient and public involvement in preclinical research from any discipline. Methods: This scoping review will search the literature in Medline (PubMed), Embase, CINAHL, PsycINFO, Web of Science Core Collection, Scopus, and OpenGrey.net to explore the application of PPI in preclinical research. This review will follow the Joanna Briggs Institute (JBI) guidelines for scoping reviews. It will be reported according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Two reviewers will independently review articles for inclusion in the final review. Data extraction will be guided by the research questions. The PPI advisory panel will then collaboratively identify themes in the extracted data. Discussion: This scoping review will provide a map of current evidence surrounding preclinical PPI, and identify the body of literature on this topic, which has not been comprehensively reviewed to date. Findings will inform ongoing work of the research team, support the work of other preclinical researchers aiming to include PPI in their own research, and identify knowledge and practice gaps. Areas for future research will be identified.

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Is Co-production Just Really Good PPI? Making Sense of Patient and Public Involvement and Co-production Networks

Cited by 41 publications

References 38 publications

Altered smell and taste: anosmia, parosmia and the impact of long Covid-19

Altered smell and taste: anosmia, parosmia and the impact of long Covid-19

Lost in the shadows: reflections on the dark side of co-production

Patient and Public Involvement (PPI) in preclinical research: A scoping review protocol

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