The Involvement of Service Users and People With Lived Experience in Mental Health Care Innovation Through Design: Systematic Review (Preprint)

Abstract

BACKGROUND Mental health care faces challenges where innovation is seen as necessary. Many of these challenges require the involvement of service users and people with lived experience in developing and evaluating mental health care services. Since the development of digital interventions is becoming more prevalent, design approaches are also increasingly finding their way into mental health. There is evidence that these approaches can successfully integrate user experience into mental health services. However, there is no clear overview of the studies conducted and their lessons learned concerning the involvement of service users and people with lived experience. OBJECTIVE This systematic review aims to present an overview of the involvement of service users and people with lived experience in mental health care services through design approaches and to provide insight into the advantages of design approaches in mental health care innovation. METHODS The following six databases were searched for relevant abstracts: PsychInfo, PubMed, Web of Science, Scopus, and Embase. Additionally, two health design journal archives were searched. Both journals publish papers at the intersection of health and design. RESULTS Our initial database search yielded 2758 records. After removing the duplicates, 2013 records were screened. Next, of the 42 records, we screened the full text, leaving 28 papers for inclusion. We also identified 71 records via searching two specific health design journals. After removing the duplicates, we retrieved 54 records that were assessed for eligibility. Of those 54 records, 5 papers were included. This makes a total of 33 included papers. Most of the included studies focused on the design or evaluation of a digital intervention. The results show that design approaches are widespread in mental health services and that participants are involved in different roles, except in diagnostics. We identified a variety of reported added value, ranging from tailoring and testing (digital) interventions, improving engagement and collaboration, gathering the needs of stakeholders, emancipating participants, and using design as a paradigm for the therapeutic and personal recovery process itself. The challenges range from recruiting participants, flexibility and time management, providing a safe space and avoiding stigmatization, balancing insights from design and medical science, to managing design processes in medical environments. CONCLUSIONS This systematic review provides an overview of studies that used design to involve service users and people with lived experience in mental health care innovation. Design approaches have advantages for involving service users and people with lived experience in mental health care innovation, offering added value and having manageable challenges. Future studies using design approaches in mental health care should involve participants as partners and decision-makers, and report on collaboration in a systematic and clear manner.

Co-producing digital mental health interventions: A systematic review

“…Phase of involvement was variable, with highest user involvement during the first stage of the co-production process, and only nine studies involving end users throughout all stages of co-production. The findings from this review overlap with the systematic review conducted by Veldmeijer et al, 31 who explored the extent to which stakeholders were involved in mental healthcare through design, including DMHIs. Both reviews found that the level of involvement of end users was lower in the latter phases.…”

“…The review found most studies involved end users at a ‘co-thinker’ level within the matrix framework developed by Smits et al, 29 with no single study involving end users at the highest level as ‘decision maker’. These conclusions were supported by another review of 433 studies by Baines et al 31 who explored co-production within digital health innovation, implementation, and evaluation, and found whilst co-production is recognised as essential, it is rarely practised. Whilst these reviews concern co-production, they did not describe the methods and approaches to facilitate co-production, nor explore the barriers and added value to implementing co-production, which would be clinically useful for guiding decisions when co-producing DMHIs.…”

“…Search terms were also informed by title and abstracts of key papers, including review papers. 30 , 31 Search terms were categorised into: (a) mental health difficulties, (b) mobile applications and (c) co-production. Free text and Medical Subject Headings (MeSH) terms were used for each database.…”

Designing a Library of Lived Experience for Mental Health: integrated realist synthesis and experience-based co-design study

“…Existing models for sharing mental health experiences do have limitations. Many opportunities are offered only periodically by health services and educational institutions, such as those linked to service improvement [9] or health professional training [10]. Others require commitment to more formal positions, including the peer-support worker role in the UK [11], which may preclude access by those with existing commitments.…”