1.5 Elevating the Perspective of People with Lived Experience of Extreme Distress and Disability

For many decades, people with lived experience of distress and mental health issues have had a profound impact on rethinking and rearranging societal responses to mental health and distress.¹⁶³ In policy and practice, this group has altered service provision and prompted policy change and law reform. Quite outside of traditional services they have established forms of mutual aid and community development to help people in personal crisis, profound distress and extreme states of consciousness. In research, service user and survivors and representative groups have challenged traditional research assumptions, theories and methods, developed ethical frameworks and aligned their work to other social movements. All of this has contributed greatly to the development of knowledge about distress, mental health, illness and disability.¹⁶⁴

The involvement of diverse groups of people with firsthand experience in mental health services in research typically affects how that research is undertaken, including the empirical and conceptual approaches that are chosen, and what is produced. Yet, in many public documents celebrating the positive potential of digital technologies in mental healthcare, there is a concerning lack of partnership with people with firsthand experience of mental health services and their representative organisations.¹⁶⁵ In a 2021 survey, Piers Gooding and Timothy Kariotis reviewed all applied studies that used algorithmic and data-driven technologies in ‘online mental health interventions’.¹⁶⁶ Of the 132 papers in the survey, only four (or 3% of the field captured in the survey) appeared to involve people who have used mental health services, or those who have lived experience or psychosocial disability, in the design, evaluation or implementation of the proposals in any substantive way (Refer to Figure 1). The studies demonstrated ‘a near-complete exclusion of service users in the conceptualisation or development of algorithmic and data-driven technologies’ and their application to mental health services.¹⁶⁷ This pattern conforms with a longstanding marginalisation of lived experience perspectives in academic research.¹⁶⁸

Figure 1: The field captured in the survey of ‘online mental health’ studies

Exclusion does not define all initiatives in the field. Indeed, there are good examples of technological responses that have been designed with a high level of active input by those most affected by the Technology¹⁶⁹. There are also several data-driven technologies initiated and led by people with lived experience of distress and mental health services,¹⁷⁰ including a growing range of ‘digital peer support measures’ around the world.¹⁷¹

Hello Human, Hello Machine by Rachel Hanlon, Dr Johanne Trippas, Dr Matthew Gardiner, and Jess Coldrey in Science Gallery Melbourne’s MENTAL. Photo by Alan Weedon. This version was developed in collaboration with Dr Johanne Trippas. Five members of Sci-Curious: Eli/Elena McGannon, Annabel Yenson, Claire Price, Jess Coldrey and Joseph Doggett-Williams. Creative technical assistance from Dr Matthew Gardiner

Other initiatives promote mutual forms of peer support and community development

Informal initiatives such as the Kenyan virtual support network may not make it into the public spotlight in the same way governments, health practitioners, large NGOs, and private sector actors do. Nor may they deploy AI or other ‘cutting edge’ technologies. Yet, they often warrant resources or further research to determine how and why they are working (if indeed they are) and how they can be supported.

Other peer-led initiatives use data-driven technologies in systemic advocacy and the monitoring of state-run services.

However, despite some good examples, there are concerning signs that much activity in academia, the market and government have not adopted the standard of active involvement of people with lived experience.¹⁸⁰

Furthermore, of the little commentary and scholarship by people with lived experience that does exist, most commentators tend to be more ambivalent about digital technology’s role in mental healthcare and crisis responses than those in government, industry and professional bodies. These diverse and varied viewpoints will be discussed throughout this report.

Ultimately, our report is premised on the view that active involvement of those most impacted by algorithmic and data-driven technologies should not be seen merely as a matter of ‘stakeholder engagement’, but rather as an ethical orientation. This ethos requires a stronger social and political commitment by actors involved in digitising mental health initiatives to avoid the pitfalls of past research that was ‘done to’ and not with or by people who are primarily impacted.

Thoughtful, participatory design is also likely to result in higher quality technological practices that better meet the needs and preferences of those for whom they are designed. Without it, there is a greater likelihood of costly technologies being introduced in an unthinking manner, created to address one issue without sufficient thought to harmful flow-on consequences. According to Dainius Pūras, the former UN Special Rapporteur on the Right to the Highest Quality Physical and Mental Health:

Diverse parts of the international social movement of disabled people have also advocated along these lines, as have multiple international and national human rights agencies.¹⁸²

Harms perpetuated in the name of mental health care in the past offer a cautionary tale for any proposed solutions in mental health services today that exclude affected populations. Clarence Sundram has written of widespread abuse and violence perpetrated in recent times, in which people deemed mentally, intellectually and cognitively impaired in some way were subject to cruel, inhuman and degrading treatment of various kinds.183 This included arbitrary detention without legal process (sometimes for life), forced sterilisation, being chained and caged, confinement to squalid conditions in institutions, the use of painful medicines and procedures, irreversible surgical interventions, and medical experimentation against individuals’ wishes, including experimentation with no intended benefit for the person.

This history recalls that harms in the name of care have occurred in living memory, some of which continue today (as discussed throughout Part 2). Many people who have experienced distress, psychosis, psychosocial disability and so on, have had negative, violative and dismissive experiences in mental health services—even as many have had positive experiences.184 Several commentators with a range of experiences with mental health services have demanded that the digital turn must not extend or exacerbate these historical patterns of harm, even if that means proceeding cautiously.¹⁸⁵

The consequences of poorly designed algorithmic and digital technologies to assist people in mental health crises will be borne by people who have engaged with mental health services, or who live with distress, illness and disability. Hence, these groups must be actively involved in governance of algorithmic and data-driven technology in the mental health context. Jonah Bossewitch puts it succinctly when he writes: ‘It is possible to redirect this wizardly technology to help support people better. Doing this well starts with inclusive design—people with lived experience need to be involved in planning and shaping the systems meant to support them. Nothing about us without us.’¹⁸⁷

To draw out the various issues raised by the rise of automation in the mental health context, the remainder of this report is ordered around the following inter-related themes, or ethical and political values: