Evidence map›Paper›PMID 42786499›Full record

ReviewResearch involvement and engagement2026

Conceptualising and operationalising 'patient and public involvement' (PPI) and 'responsible research and innovation' (RRI) in youth mental health research: a scoping review.

Josimar Antônio de Alcântara Mendes, Mathijs Lucassen, Alex Adams, Ayan Mahamud, Lucy Hitcham, Sachiyo Ito-Jaeger, Christine Aicardi, Emma Nielsen, Lily Roberts, Ellen Townsend and 1 more

Abstract readReview
In one paragraph

Review in Research involvement and engagement, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Josimar Antônio de Alcântara MendesResponsible Technology Institute, Department of Computer Science, University of Oxford, Wolfson Building, Parks Rd, Oxford, OX1 3QG, UK. josimards@gmail.com.ORCID http://orcid.org/0000-0001-8230-1998
Mathijs LucassenCity St George's, University of London, Northampton Square, London, EC1V 0HB, UK.ORCID http://orcid.org/0000-0001-6958-3468
Alex AdamsSprouting Minds (Young People Advisory Group - Digital Youth Programme), University of Nottingham, Nottingham, NG7 2UH, UK.ORCID http://orcid.org/0009-0006-8615-0262
Ayan MahamudSprouting Minds (Young People Advisory Group - Digital Youth Programme), University of Nottingham, Nottingham, NG7 2UH, UK.ORCID http://orcid.org/0009-0004-2392-6516
Lucy Hitcham *National Institute for Health and Care Research (NIHR) Nottingham Biomedical Research Centre, Nottingham, NG7 2UH, UK.ORCID http://orcid.org/0000-0003-2117-1936
Sachiyo Ito-Jaeger *National Institute for Health and Care Research (NIHR) Nottingham Biomedical Research Centre, Nottingham, NG7 2UH, UK.ORCID http://orcid.org/0000-0001-9664-7797
Christine AicardiKing's College London, Strand, London, WC2R 2LS, UK.ORCID http://orcid.org/0000-0003-1112-7720
Emma NielsenUniversity of Nottingham, Nottingham, NG7 2UH, UK.ORCID http://orcid.org/0000-0002-6550-9487
Lily RobertsUniversity of Nottingham, Nottingham, NG7 2UH, UK.ORCID http://orcid.org/0009-0000-9216-7809
Ellen TownsendUniversity of Nottingham, Nottingham, NG7 2UH, UK.ORCID http://orcid.org/0000-0002-4677-5958
Marina JirotkaResponsible Technology Institute, Department of Computer Science, University of Oxford, Wolfson Building, Parks Rd, Oxford, OX1 3QG, UK.ORCID http://orcid.org/0000-0002-6088-3955

Funding

UK Research and Innovation Digital Youth Programme award [MRC project reference MR/W002450/1]
6 · The paper itself

Abstract

backgroundMeaningful youth involvement has gained attention in mental health research, especially in collaborative approaches such as Patient and Public Involvement (PPI) and Responsible Research and Innovation (RRI). While both aim to support inclusive research, there is limited clarity on how they are conceptualised and used in projects together with young people. This scoping review examines how PPI and RRI approaches are defined and implemented in mental health research involving young people as collaborators rather than solely as research participants.

methodsThe included studies were empirical, peer-reviewed articles published in English that involved young people (aged 10-25 years) as collaborators in shaping mental health-related research, interventions, or products beyond their contributions as study participants, and used PPI, RRI, or related collaborative approaches. Reference to terms such as "participatory research" alone was not treated as evidence of involvement; eligibility required young people to have a reported collaborative role. Eight bibliographic databases (Scopus, Web of Science, MEDLINE, PsycINFO, CINAHL, ASSIA, PsycARTICLES, and IBSS) were searched on 21 February 2024. Following the JBI methodology and PRISMA-ScR guidelines, records were screened. Data were then charted from the included papers to capture study characteristics, definitions and applications of PPI and RRI, and the modes and reported forms or roles of youth involvement.

resultsThirty-two papers were included, most were published from 2022 onwards, originated from high-income English-speaking countries, and defined and applied PPI more frequently than RRI. However, both approaches lacked operational clarity. Key terms such as co-production, co-design, and participatory research were widely but inconsistently used, often without clear definitions or sufficient information to establish whether young people were involved as partners rather than solely as research participants. Explicit discussions related to power or intersectional barriers to youth involvement were rare. Some studies reported involving large numbers of young people, including up to 339 youths, raising questions about feasibility and depth of involvement.

conclusionsThis review highlights promising trends in extending youth involvement in mental health research, but also reveals important conceptual and ethical limitations. The findings emphasise the need for clearer definitions, explicit distinctions between meaningful youth involvement and being researched as a study's participant, more inclusive research practices, and stronger commitments to equity. Expanding future research is crucial for advancing responsible and collaborative approaches in youth mental health.

Indexed as

Adolescent Mental HealthCollaborative researchCo-productionPatient and Public Involvement (PPI)Responsible Research and Innovation (RRI)Youth Involvement

Identifiers

PMID42786499
PMCPMC13602541

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.