How embedded is public involvement in mainstream health research in England a decade after policy implementation? A realist evaluation

Wilson, Patricia M.; Mathie, Elspeth; Poland, Fiona; Keenan, Julia; Howe, Amanda; Munday, Diane; Kendall, Sally; Cowe, Marion; Staniszewska, Sophie; Goodman, Claire

doi:10.1177/1355819617750688

Cited by 34 publications

(58 citation statements)

References 30 publications

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“…Because this study was directly concerned with the perspectives of parents, it was integral to the study that we engaged with parents in the development of the study. Patient and public involvement has been documented as central to undertaking research that concerns users of the health services (Wilson et al, ). During the design phase of the study, 10 volunteers from the National Children's Bureau parents' group took part in discussions on the proposed research during a half‐day event and put forward suggestions and comments that were implemented wherever practicable.…”

Section: Methodsmentioning

confidence: 99%

Acceptability and understanding of the Ages & Stages Questionnaires®, Third Edition, as part of the Healthy Child Programme 2‐year health and development review in England: Parent and professional perspectives

Kendall

Nash

Braun

et al. 2019

Child

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BackgroundThe Healthy Child Programme is the universal public health system in England to assess and monitor child health from 0 to 19. Following a review of measures for closer monitoring at age 2 years, the Department of Health for England implemented the Ages & Stages Questionnaires®, Third Edition (ASQ‐3™; Hereon, ASQ‐3).AimThe aim of this study was to evaluate the acceptability and understanding of the ASQ‐3 in England by health professionals and parents.MethodA mixed‐methods approach was used. This paper reports on the qualitative data drawn from interviews with 40 parents and 12 focus groups with 85 health professionals. The data were analysed using applied thematic analysis.FindingsOverall, parents and health professionals found the ASQ‐3 acceptable and understandable and could use it as a measure at age 2 years. The ability to work in partnership was valued.Some limitations included potential to cause anxiety, concerns around the safety of some of the items, and use of Americanized language. Health professional's training in the use the ASQ‐3 was inconsistent.ConclusionThe ASQ‐3 is an acceptable and understandable measure to use as part of the 2‐year assessment with some adaptations to the English context and some standardized training for health professionals.

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Section: Methodsmentioning

confidence: 99%

Acceptability and understanding of the Ages & Stages Questionnaires®, Third Edition, as part of the Healthy Child Programme 2‐year health and development review in England: Parent and professional perspectives

Kendall

Nash

Braun

et al. 2019

Child

Self Cite

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“…5 Considerable debate remains as to what can and should be measured, and how we define PPI as an "intervention." 6,7 Fundamental differences in understanding of the goals and value of PPI result in very different approaches to understanding impact-is it a technical process to improve the effectiveness, acceptability and feasibility of medical research, or is it rather about democratic rights and empowerment, or even an essential challenge to what constitutes "evidence"? [8][9][10] Qualitative research can provide insights into how PPI is implemented (or not) and how it may affect research, 11,12 but it cannot give us a definitive account of impact.…”

Section: Backg Rou N Dmentioning

confidence: 99%

“About sixty per cent I want to do it”: Health researchers’ attitudes to, and experiences of, patient and public involvement (PPI)—A qualitative interview study

Boylan

Locock

Thomson

et al. 2019

Health Expectations

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165

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Background Funders, policy‐makers and research organizations increasingly expect health researchers in the UK to involve patients and members of the public in research. It has been stated that it makes research “more effective, more credible and often more cost efficient.” However, the evidence base for this assertion is evolving and can be limited. There has been little research into how health researchers feel about involving people, how they go about it, how they manage formal policy rhetoric, and what happens in practice. Objective To explore researchers’ experiences and perceptions of patient and public involvement (PPI). Methods Semi‐structured interview study of 36 health researchers (both clinical and non‐clinical), with data collection and thematic analysis informed by the theoretical domains framework. Results In the course of our analysis, we developed four themes that encapsulate the participants’ experiences and perceptions of PPI. Participants expressed ambivalence, cynicism and enthusiasm about PPI, an activity that creates emotional labour, which is both rewarding and burdensome and requires practical and social support. It is operationalized in an academic context influenced by power and incentives. Discussion and conclusions Researchers’ experiences and attitudes towards patient and public involvement are a key factor in the successful embedding of involvement within the wider research culture. We call for a culture change that supports the development of effective organizational approach to support involvement.

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“…The PPI research infrastructure has existed for over a decade [38] and the importance of PPI in this prioritisation exercise was reinforced by the many differences between their views and those of the non-PPI participants [39]. Given that patient involvement in healthcare decision-making can lead to better affective, cognitive and health outcomes [40,41], the value of involving patients in the entire research process is implicit in the top-ranked 'patient concerns', 'Is there a shared decision (with patients) about using each medicine?…”

Section: Discussionmentioning

confidence: 99%

A multi-stakeholder approach to the co-production of the research agenda for medicines optimisation

Fellenor

Britten

Courtenay

et al. 2019

Preprint

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Background Over one billion prescription items are dispensed in the United Kingdom annually. Up to 50% of medicines are not used as intended, resulting in sub-optimal health outcomes and harm. Medicines optimisation is ‘a person-centred approach to safe and effective medicines use, to ensure people obtain the best possible outcomes from their medicines’. The purpose of this study was to co-produce a prioritised research agenda for medicines optimisation using a multi-stakeholder (patient, public and health professionals) approach. Methods A three-stage, multiple method process was used including: generation of preliminary research questions (Stage 1) using a modified Nominal Group Technique; electronic consultation and ranking with a wider multi-stakeholder group (Stage 2); a face-to-face, one-day consensus meeting involving representatives from all stakeholder groups (Stage 3). Results In total, 92 research questions were identified during Stages 1 and 2 and ranked in order of priority during stage 3. Questions were categorised into four areas: ‘Patient Concerns’ [e.g. is there a shared decision (with patients) about using each medicine?], ‘Polypharmacy’ [e.g. how to design health services to cope with the challenge of multiple medicines use?], ‘Non-Medical Prescribing’ [e.g. how can the contribution of non-medical prescribers be optimised in primary care?], and ‘Deprescribing’ [e.g. what support is needed by prescribers to deprescribe?]. A significant number of the 92 questions were generated by Patient and Public Involvement representatives, which demonstrates the importance of including this stakeholder group when identifying research priorities. Conclusions A wide range of research questions was generated reflecting concerns which affect patients, practitioners, the health service, as well the ethical and philosophical aspects of the prescribing and deprescribing of medicines. These questions should be used to set future research agendas and funding commissions.

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How embedded is public involvement in mainstream health research in England a decade after policy implementation? A realist evaluation

Cited by 34 publications

References 30 publications

Acceptability and understanding of the Ages & Stages Questionnaires®, Third Edition, as part of the Healthy Child Programme 2‐year health and development review in England: Parent and professional perspectives

Acceptability and understanding of the Ages & Stages Questionnaires®, Third Edition, as part of the Healthy Child Programme 2‐year health and development review in England: Parent and professional perspectives

“About sixty per cent I want to do it”: Health researchers’ attitudes to, and experiences of, patient and public involvement (PPI)—A qualitative interview study

A multi-stakeholder approach to the co-production of the research agenda for medicines optimisation

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