# Engagement of people with lived experience in the design and development of digital mental health interventions: A scoping review of engagement characteristics and impacts

## TL;DR

This paper reviews how involving people with mental health experience in digital tool design affects outcomes, finding mostly consultative roles and unclear links to success.

## Contribution

The study provides a comprehensive scoping review of PwLE engagement in DMHI development, highlighting engagement characteristics and gaps in outcome evaluation.

## Key findings

- Most PwLE engagement occurred through consultation methods like focus groups.
- Engagement led to changes in DMHI content, design, and delivery.
- Links between PwLE engagement and mental health outcomes remain unclear.

## Abstract

Digital mental health interventions (DMHIs) aim to increase access to mental healthcare for people who would otherwise not access it. Accordingly, the design and development of DMHIs may particularly benefit from engaging people with lived experience (PwLE).

A scoping review involving systematic database searches identified and synthesised original research reporting PwLE engagement in the design and development of DMHIs (published January 2000– April 2024). Articles were independently title/abstract screened by two authors, and full-text screened by one author. Included article data were extracted, independently checked, and descriptively synthesised.

Twenty-nine studies were included, published 2012–2024, in high-income countries. Engagement was mostly via ‘consultation’ level activities (e.g., focus groups), followed by ‘involvement’ or ‘collaboration’. In almost half of studies, engagement spanned multiple engagement levels across the different development stages. Reported impacts included changes to content, design, and delivery (e.g., revised language). Authors credited engagement with improved DMHI relevance, acceptability, and inclusivity, while noted challenges include limited diversity among engaged PwLE and resource demands. For reported DMHI outcomes, studies reported positive findings related to use, and attitudes towards using DMHIs. However, reported findings were more mixed for mental health outcomes (e.g., symptom improvement). Additionally, it was not possible to directly link outcomes to PwLE engagement.

Review findings highlight the increasing but predominantly consultative engagement of PwLE in developing DMHIs. Future research directions include more transparent and consistent reporting of engagement, deliberative decision-making around engagement levels/types, and more rigorous evaluation of engagement to investigate its association with DMHI outcomes.

•Design of DMHIs may particularly benefit from engaging people with lived experience.•Scoping review synthesised 29 studies reporting PwLE engagement in DMHI development.•Engagement was mostly consultative; changes spanned DMHI design, content, delivery.•Benefits were commonly reported, but direct links to DMHI outcomes remain unclear.•More detailed reporting and rigorous evaluation of engagement in DMHI research needed.

Design of DMHIs may particularly benefit from engaging people with lived experience.

Scoping review synthesised 29 studies reporting PwLE engagement in DMHI development.

Engagement was mostly consultative; changes spanned DMHI design, content, delivery.

Benefits were commonly reported, but direct links to DMHI outcomes remain unclear.

More detailed reporting and rigorous evaluation of engagement in DMHI research needed.