Bakermans-Kranenburg Marian J, van IJzendoorn Marinus H
ISPA - University Institute of Psychological Social and Life Sciences Lisbon Portugal.
Research Department of Clinical, Educational and Health Psychology UCL London UK.
JCPP Adv. 2024 Jul 3;4(4):e12258. doi: 10.1002/jcv2.12258. eCollection 2024 Dec.
Participant and Public Involvement in youth mental health research aims at making research more responsive to the needs of youth struggling with mental health issues, their parents, and mental health professionals and other stakeholders. Do characteristics of Patient and Public Involvement (PPI) in youth mental health research align with transparency and replication prerequisites as necessary conditions for translation? Relatedly, the question is addressed whether co-authorship should be assigned to youth involved in the study.
Here we address these questions re-visiting 50 PPI studies included in two recent systematic reviews of PPI on characteristics that are pertinent to questions about transparency, replicability, translatability, and co-authorship in PPI research.
Almost two-third of the studies on youth mental health incorporating PPI translate their results to policy or practice, mostly as recommendations but sometimes also by dissemination of (online) interventions. At the same time the authors of a substantial majority of the studies (70%) also suggest the need for further work on their results, for example, in randomized controlled trials to validate the outcome of their exploratory inquiry. Only a quarter of the studies using PPI met the conditions for replicability, thus a majority of the PPI studies suggest premature translation of results. Authorship to involved participants was assigned in 24% of the studies.
"Anything goes" for PPI in an exploratory stage to generate fruitful hypotheses. Translation of the findings of PPI studies however require a firm evidence base of replicated results. Radical merging of research and action in participatory action research seems incompatible with replicable and therefore translatable inquiry. Assigning co-authorship to PPI representatives is often at odds with current guidelines for authorship. More evidence from randomized trials on the translational impact of PPI is needed before grant foundations should require PPI in grant proposals.
让参与者和公众参与青少年心理健康研究旨在使研究能更好地满足那些正在与心理健康问题作斗争的青少年、他们的父母、心理健康专业人员及其他利益相关者的需求。青少年心理健康研究中的患者及公众参与（PPI）的特征是否符合作为转化必要条件的透明度和可重复性要求？与此相关的问题是，是否应将共同作者身份授予参与研究的青少年。
在此，我们通过重新审视最近两项关于PPI的系统评价中纳入的50项PPI研究来解决这些问题，这些研究涉及与PPI研究中透明度、可重复性、可转化性及共同作者身份相关问题的特征。
几乎三分之二纳入PPI的青少年心理健康研究将其结果转化为政策或实践，大多是作为建议，但有时也通过传播（在线）干预措施来实现。与此同时，绝大多数研究（70%）的作者也表示需要对其结果做进一步研究，例如，通过随机对照试验来验证其探索性研究的结果。只有四分之一使用PPI方法的研究满足可重复性条件，因此，大多数PPI研究表明结果转化过早。24%的研究将共同作者身份授予了参与研究的人员。
在探索阶段，PPI可以“不拘一格”以产生富有成果的假设。然而，PPI研究结果的转化需要基于可重复结果的确凿证据基础。参与式行动研究中研究与行动的激进融合似乎与可重复且因此可转化的探究不相容。将共同作者身份授予PPI代表往往与当前的作者身份指南不一致。在资助机构要求资助申请中包含PPI之前，需要更多来自随机试验的关于PPI转化影响的证据。
