Considerations for patient and public involvement and engagement in health research

Aiyegbusi, Olalekan Lee; McMullan, Christel; Hughes, Sarah; Turner, Grace; Subramanian, Anuradhaa; Hotham, Richard; Davies, Elin Haf; Frost, Chris; Alder, Yvonne; Agyen, Lisa; Buckland, Lewis; Camaradou, Jennifer; Chong, Amy; Jeyes, Felicity; Kumar, Sumita; Matthews, Karen; Moore, Patricia S.; Ormerod, Jane; Price, Gary; Saint-Cricq, Michael; Stanton, David; Walker, Anita; Haroon, Shamil; Denniston, Alastair K; Calvert, Melanie; Brown, Kirsty; Chandan, Joht Singh; Gkoutos, Georgios V.; Jackson, Louise; Lord, Janet M.; Marshall, Tom; Marwaha, Steven; Myles, Puja; Nirantharakumar, Krishnarajah; Rivera, Samantha Cruz; Sapey, Elizabeth; Simms-Williams, Nikita; Williams, Tim; Wraith, David C.

doi:10.1038/s41591-023-02445-x

Cited by 19 publications

(7 citation statements)

References 24 publications

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“…Previous studies have undertaken different approaches to evaluating PI activities primarily at the end of their research activities [ 33 ]. The steering group wished for each workshop to be evaluated separately, but via multiple methods.…”

Section: Resultsmentioning

confidence: 99%

An evaluation of a public partnership project between academic institutions and young people with Black African, Asian and Caribbean heritage

Moult,

Knight,

Medina

et al. 2024

Res Involv Engagem

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Background This project (named Reinvent) aimed to promote Public Involvement (PI) in health research. Academics worked with a community group, the Eloquent Praise & Empowerment Dance Company, to develop a community partnership with young people from Black African, Asian and Caribbean heritage communities. The goal of this paper is to evaluate the Reinvent project for key learnings on how to engage and build partnerships with young people from Black African, Asian and Caribbean heritage communities. Methods Reinvent developed a steering group which consisted of five young people, one academic, a Race Equality Ambassador and the Director of Eloquent. The steering group co-produced an agenda for two workshops and the evaluation tools used. The content of the workshops included drama exercises, discussions on physical and mental health, nutrition and school-life, short introductions to the concepts of research and PI, and group work to critique and improve a video currently used to promote PI in health research to young people. The evaluation tools included using the ‘Cube’ evaluation framework, video-blogging and collecting anonymous feedback. Findings The responses to the ‘Cube’ evaluation framework were positive across all four domains (agenda, voice, contribute change) in both workshops. A few of the young people described having a better understanding of the meaning and practice of PI in a video-blog. The anonymous feedback suggested that the workshops had increased young people’s confidence in sharing their thoughts and opinions about health and PI. Conclusion Reinvent has shown that academic institutions and young people from an under-served community can partner to co-design workshops and apply evaluation tools. Working with young people in an environment in which they were comfortable, and by researchers joining in with the activities that the young people enjoyed (such as dance), enabled more informal and open conversations to develop. More work is needed to build upon this project so that young people can feel confident and supported to get involved in PI activities relating to research.

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Section: Resultsmentioning

confidence: 99%

An evaluation of a public partnership project between academic institutions and young people with Black African, Asian and Caribbean heritage

Moult,

Knight,

Medina

et al. 2024

Res Involv Engagem

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“…Patient and Public Involvement and Engagement (PPIE) activity, including family involvement in paediatrics, is increasingly recognised in practice, policy and research as a fundamental requirement when setting priorities and designing services to improve patient care [ 65 – 68 ]. It provides opportunities for collaborative working, increasing patient choice and shared decision making [ 66 , 67 , 69 ], but even when clinical innovation is manifest and patient advocacy groups are active, there is disparity in the implementation of PPIE activities, most being delivered in research [ 67 , 70 , 71 ]. Across the field of NBS, PPIE work has exposed challenges for clinicians in patient and family counselling on rare diseases outside of specific specialist services, which can contribute to compromising patient and family journeys, with parents on occasion reporting the diagnostic period following NBS a lasting traumatic experience [ 72 , 73 ].…”

Section: Discussionmentioning

confidence: 99%

Parental Engagement in Identifying Information Needs After Newborn Screening for Families of Infants with Suspected Athymia

Howley,

Soomann,

Kreins

2024

J Clin Immunol

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Congenital athymia is a rare T-lymphocytopaenic condition, which requires early corrective treatment with thymus transplantation (TT). Athymic patients are increasingly identified through newborn screening (NBS) for severe combined immunodeficiency (SCID). Lack of relatable information resources contributes to challenging patient and family journeys during the diagnostic period following abnormal NBS results. Patient and Public Involvement and Engagement (PPIE) activities, including parental involvement in paediatrics, are valuable initiatives to improve clinical communication and parental information strategies. Parents of infants with suspected athymia were therefore invited to discuss the information they received during the diagnostic period following NBS with the aim to identify parental information needs and targeted strategies to address these adequately. Parents reported that athymia was not considered with them as a possible differential diagnosis until weeks after initial NBS results. Whilst appropriate clinical information about athymia and TT was available upon referral to specialist immunology services, improved access to easy-to-understand information from reliable sources, including from clinical nurse specialists and peer support systems, remained desirable. A roadmap concept, with written or digital information, addressing parental needs in real time during a potentially complex diagnostic journey, was proposed and is transferrable to other inborn errors of immunity (IEI) and rare diseases. This PPIE activity provides insight into the information needs of parents of infants with suspected athymia who are identified through SCID NBS, and highlights the role for PPIE in promoting patient- and family-centred strategies to improve IEI care.

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“…PPI activities are planned to co-design the educational contents of the intervention, the data collection strategies, and the dissemination activities of the core outcomes of this study, in accordance with the current guidelines and research recommendations for interventional studies. 37 , 38 PPI will preliminarily support this project by providing an enhanced fit of the research activities to the target population. The plan involves a representative panel of stakeholders (e.g., teachers, parents, and adolescents) by holding group meetings.…”

Section: Methodsmentioning

confidence: 99%

The community nurse’s role on the promotion of papillomavirus vaccination among young students: A study protocol

Simonetti,

Tomietto,

Comparcini

et al. 2024

Human Vaccines & Immunotherapeutics

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Vaccination is the principal strategy for primary prevention of infection by Human Papilloma Virus (HPV), which causes different pathological conditions, up to cancer, in both males and females. However, to date, knowledge among adolescents and their parents about the HPV vaccine is still low. The aim of this quasi-experimental, multicenter study is to assess the effectiveness of a digital educational intervention, conducted by a multidisciplinary health-care team including a Community Nurse, to increase adolescents’ HPV vaccination uptake, their knowledge, self-efficacy, feelings and involvement in HPV vaccine decision-making, and parents’ vaccination hesitancy. The study will be carried out among a population of students (and their parents), aged between 11 and 13, at secondary schools in Italy. Validated questionnaires will be administered to both students and parents at baseline (T0) and 3 months after a digital educational intervention (T1). The findings may be useful in evaluating and deepening a methodology for designing and implementing educational interventions, embedded in the school setting, that could promote the achievement of outcomes within the broader process of youth’s health promotion.

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Considerations for patient and public involvement and engagement in health research

Cited by 19 publications

References 24 publications

An evaluation of a public partnership project between academic institutions and young people with Black African, Asian and Caribbean heritage

An evaluation of a public partnership project between academic institutions and young people with Black African, Asian and Caribbean heritage

Parental Engagement in Identifying Information Needs After Newborn Screening for Families of Infants with Suspected Athymia

The community nurse’s role on the promotion of papillomavirus vaccination among young students: A study protocol

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