Public and patient involvement in paediatric research

Bate, Jessica; Ranasinghe, Neil; Ling, Rebecca E.; Preston, Jennifer; Nightingale, Ruth; Denegri, Simon

doi:10.1136/archdischild-2015-309500

Cited by 37 publications

(46 citation statements)

References 1 publication

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“…Involving people at all stages of health research (including young people) is now widely recommended, considered to be ethically important and has been called for by young people themselves [1–3]. In the UK, this has resulted in changes to the grant and ethics committee processes and to patient and public involvement (PPI) being widely advocated by professional bodies.…”

Section: Introductionmentioning

confidence: 99%

What do young people with rheumatic disease believe to be important to research about their condition? A UK-wide study

et al. 2017

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BackgroundThe involvement of people of all ages including young people in research is now widely advocated but prioritisation of research topics is still driven largely by professional agendas. Evidence from adult literature has reported a mismatch between a researcher and patient generated list of research topics. There have been no studies to date exploring the priorities of young people with long term conditions other than in SLE. The study aimed to explore the research priorities of young people across the UK with respect to rheumatic conditions.MethodsFocus groups were undertaken with young people aged 11–24 years with rheumatic conditions recruited across the UK via members of the Barbara Ansell National Network for Adolescent Rheumatology BANNAR and relevant national charities. Data was analysed using a Framework approach. Participants discussed their beliefs about what should be researched in: Basic Science; Clinical Medicine; Health Services, Psychosocial, and Public Health. They were then invited to prioritize these areas in terms of how much funding they should receive.ResultsThirteen focus groups were held involving 63 participants (18 males: 45 females, mean age 16 years, range 10 to 24) in all four nations of the UK. Young people’s research priorities were influenced by whether they felt research would achieve benefits for all or just some patients and long or short term goals. Another influence was whether participants felt that research areas were already well funded.Across all groups, Basic Science was a key priority and participants felt that psychosocial research should be prioritized more. Health Services Research was a lower priority, as the majority of participants were happy with their care. Clinical medicine was not a high priority as young people were happy with their medication or uncomfortable with trying new ones. Finally, for nearly all groups, Public Health was a low priority. Differences were also observed between the two age groups and across the geographically diverse focus groups.ConclusionUnderstanding young people’s research priorities is important to develop research that is in tune with their needs. The results highlight the importance of considering the whole age range of adolescence and young adulthood as well as geographical diversity. The findings from this work will inform the future research of the Barbara Ansell National Network for Adolescent Rheumatology BANNAR in the UK.

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Section: Introductionmentioning

confidence: 99%

What do young people with rheumatic disease believe to be important to research about their condition? A UK-wide study

et al. 2017

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“…While public involvement in research has historically received little empirical evaluation, improvements in both the quality and accountability of research have been observed (Bate et al, 2016). In one systematic review, beneits of public involvement at all stages of the research process were reported, including: identifying research questions; facilitating recruitment; and disseminating study indings (Brett et al, 2014a).…”

Section: Background Public Involvement In Researchmentioning

confidence: 99%

“…The importance of pre-planning, involving members early in the study, and being mindful of the use of jargonistic and technical language by researchers has also been noted (Buck et al, 2014). The current body of knowledge in this area is concentrated on the involvement of adults, although there is a growing literature on the experiences of involving children and young people (Bate et al, 2016;Parsons et al, 2018;Alderson et al, 2019;Dovey-Pearce et al, 2019;Brady and Preston, 2017;Bird et al, 2013;Nufield Council on Bioethics, 2015;Kellett, 2005;Forsyth et al, 2019). For example, children and young people have been involved in the design of interventions for clinical trials (Boote et al, 2016) and in synthesizing evidence from systematic reviews (Oliver et al, 2015).…”

Section: Background Public Involvement In Researchmentioning

confidence: 99%

Patient and public involvement in a study of multimedia clinical trial information for children, young people and families

Sheridan¹,

Preston²,

Stones³

et al. 2020

Research for All

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There is increasing recognition of the need to involve the public in health research, but accounts of how best to achieve this are scarce. This article describes public involvement in the TRials Engagement in Children and Adolescents (TRECA) study, which is developing and evaluating multimedia information resources to inform children, young people and their familes about clinical trials. A dedicated group of young people with long-term health conditions and their parents met regularly throughout the study; further involvement was sought when specific input was required. Review of formal impact records and informal discussions highlighted how public involvement can positively influence research practice and the people involved. By detailing the methods of involvement used, this work also provides guidance for successfully implementing public involvement in research, and highlights challenges that should be considered in future research projects.

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“…Eleanor J. Molloy 1,2,3,4 Neonatology, Our Lady's Children's Hospital, Crumlin, Dublin, Ireland; 5 European Foundation for the Care of Newborn Infants, Munich, Germany and 6 Section of Neonatal Medicine, Department of Medicine, Imperial College London, Chelsea and Westminster campus, London, UK Correspondence: Eleanor J. Molloy (eleanor.molloy@tcd.ie)…”

Section: How To Do This?mentioning

confidence: 99%

“…The use of different terminology and definitions in different countries has contributed to this variation. 2 Similar types of patient and family involvement are termed engagement in North America and participation in the Netherlands whereas the UK National institute for Health Research (NIHR) divides different activities into engagement, involvement and participation depending on their nature (https://www.nihr.ac. uk/patients-and-public/).…”

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confidence: 99%

Parent, child and public involvement in child health research: core value not just an optional extra

Molloy

Mader²,

Modi

et al. 2018

Pediatr Res

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z THE RIGHTS OF THE CHILD Healthcare professionals are advocates for families and children but have no consistent framework research involvement. The Convention on the Rights of the Child (CRC) enshrined 'The right to an opinion' stating that all children have the right to express their views. They also have the right to be informed and give their opinion about the world around them 1. Here we discuss Patient-Public Involvement (PPI) in research and why it is important and provide a framework to assist healthcare professionals.

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Public and patient involvement in paediatric research

Cited by 37 publications

References 1 publication

What do young people with rheumatic disease believe to be important to research about their condition? A UK-wide study

What do young people with rheumatic disease believe to be important to research about their condition? A UK-wide study

Patient and public involvement in a study of multimedia clinical trial information for children, young people and families

Parent, child and public involvement in child health research: core value not just an optional extra

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