From participants to partners: reconceptualising authentic patient engagement roles in youth mental health research

25 January, 2023

Citation, summary and comment from me below.

CITATION: From participants to partners: reconceptualising authentic patient engagement roles in youth mental health research

Matthew Prebeg et al.

Personal view| volume 10, issue 2, p139-145, february 2023

Published:December 08, 2022 DOI:

SUMMARY: The value of involving people with lived experience in the research process (ie, patient engagement) is increasingly being recognised within youth mental health research. The wide-reaching benefits of patient engagement have been documented in the literature, including the empowerment of patients, improvement of research outcomes, and increased relevance of research findings. Although various models exist to guide patient engagement, there are key concepts that deserve exploration to ensure the authentic implementation of these models and development of patient roles. Our Personal View aims to: identify and discuss barriers to patient engagement roles in the context of youth mental health research; consider how key concepts of relational empowerment, fluidity, and flexibility can address some of these barriers; and provide tangible recommendations for implementing authentic patient engagement throughout the research process.


1. Patient (citizen) engagement is neeeded not only in mental health research, but in most if not all types of research. And patient engeagement has a roll in all components of the global halthcare information system: (generating, publishing, synthesising, packaging finding and applying evidence).

2. In addition to conventional technical groups, communities of practice (of which HIFA is one of many examples) is a communication approach that can give voice to all as equal 'partners'

3. Patient representation on HIFA is high (100% of us are patients) but specific advocacy on behalf of patients is relatively lacking - we would greatly welcome more patient representatives and activists. I'm sure we have a few members of the INterantaional Association of Patient Organisations among our members. I am sure there there is scope for increased linkages with them and with specialised patient associations.

Dr Neil Pakenham-Walsh, HIFA Coordinator

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