Engaging Young People in the Development of Digital Mental Health Innovation in Africa

Lead Research Organisation: University of Oxford
Department Name: Psychiatry

Abstract

Mental health challenges are faced by 1 in 4 people globally, but in Low and Middle Income Countries (LMIC), up to 80% of people do not receive preventive or acute care . Digital mental health is seen as a promising route to address the treatment gap, but also raises ethical, legal and policy challenges. In LMICs, lack of ethics, governance and policy guidance can slow down or prevent translation of digital mental health innovations into the healthcare system. This impinges on the rights of individuals to access mental health technologies that arise from digital innovations. A further consequence of the lack of attention to ethics and governance challenges is that the balance of harms and benefits of digital mental health have not been properly identified and analysed. The lack of analysis is likely to disproportionately affect young people, who are a key target for mental health interventions, and who also have distinctive individual and social vulnerabilities. To address this problem, the network will bring together stakeholders and experts in the ethics of digital mental health, digital innovators, mental health practitioners, and policy makers across Africa. The chief aim is to develop a robust framework for responsible and relevant digital mental health interventions for young people in African countries. The cross-disciplinary network will have a group of young people at its core, who will co-create all its work and outputs. The network will use a stakeholder mapping surveys, workshops and interdisciplinary training and exchanges to achieve its aims. It will contribute not only to scholarship, but also to research capacity, co-production, inter-sector mobility, and democratic participation among young people.

Project activities will include:
-Intensive training and capacity-building opportunities for early career researchers and young people (e.g. workshops; visiting scholar programmes);
-Meetings and workshops to facilitate the transfer of knowledge among stakeholders;
-Literature reviews to critically assess and synthesise existing work, identify gaps, and formulate research questions
-Community engagement to inform empirical questions
-With young people, co-create a sustainable engagement strategy to involve young people, with a focus on representation from vulnerable groups, such as LGBTQ+; sexual violence survivors; those living with HIV/AIDS

Young people will be at the core of the Network, integrated with expert groups of researchers in ethics and social sciences; service providers (app developers, mental health practitioners and researchers); religious congregations, policy and governance. This will ensure the network outputs reflect the needs of young people and that the framework is scalable and sustainable as it is co-produced with young people, researchers, service providers, and policy makers.

1. Patel, V., Saxena, S., Lund, C., Thornicroft, G., Baingana, F., Bolton, P., et al. (2018). The Lancet Commission on global mental health and sustainable development. The Lancet, 392(10157), 1553-1598.

Planned Impact

Our network sees mental health as a multi-dimensional challenge across the life-course and adolescence as a critical 'window' for mental health support . As such young people are at the core of our strategy because they are the most exposed to digital abuse. Our vision is that 2 young people from each Co-I's country will form a core group. They will be supported to develop and/or engage in country networks forming spokes of young people. This core group will be mentored and further supported by the Lancet Global Young Leaders for Mental Health for digital mental health advocacy. The LGYLMH have contributed to this proposal. In sum, we envision a young people led network its centre, enabled to increase the engagement of young people in by building spokes in their countries and beyond.

1. YOUNG PEOPLE will benefit by:
a. Participation in Network Hub and Spokes activities such as mentoring, training in digital interventions, mental health, ethics, and research methodologies, public engagement workshops.
b. Young People beyond the network will benefit by engaging in network activities like methods development, validation of findings, dissemination activities.
c. LGYLMH will share knowledge and experience with digital health with new groups of young people.

Young people will change as a result of this work by
a. Building digital mental health literacy and developing capacity for engagement in mental health ethics, digital mental health advocacy.
b. Providing virtual and in-person fora to discuss barriers to engagement with digital innovations.

Young people will be engaged through:
a. Participation as core group of stakeholders and the Network Advisory Board
b. Lead the network spokes activities such as the mentorship programme.
c. Participating in social media groups, publishing video diaries, campaigns and develop a website.

2. AFRICAN DIGITAL MENTAL HEALTH DEVELOPERS
Digital innovators will be represented in the Network Advisory Group and will benefit through:
a. Engaging target population that enables designing, iterative piloting and amending relevant innovation for discussions of risks, benefits, facilitators and barriers to digital innovation.
b. Enable anticipating ethics and governance challenges in the design process.

What will change?
a. Developers will access target population, enabling relevant, responsible and acceptable mental health tool development with built in, features to ensure responsible innovation.
b. Developers can pilot innovations to provide evidence of acceptability, safety and efficacy.

Industry will be engaged through:
a. Industry representatives will be invited into the network, network advisory board and be involved in activities except where conflicts of interest are identified.
b. Industry sites will provide opportunities to young people and ECRs for temporary placements.

3. GOVERNANCE and ETHICS BODIES
Representatives of National Bioethics /Ethics Committees (EC) and policy-makers responsible for digital health governance will be invited to join the network and will they benefit through:
a. Through cross-stakeholder understanding and development of guidance for responsible digital innovations in African context.
b. Enhanced understanding of young people's needs and preferences around digital mental health.

What will change?
a. Development of robust ethics and governance guidance on digital mental health innovation through engagement for shared knowledge and co-creation of guidance that supports mental health advocacy.
b. Ability to hold digital users, innovators and policy makers accountable for responsible innovations.

Governance and ECs will be engaged through
a. National EC members and policy-makers will be invited into the network and to network activities.
b. A workshop held specifically for this group will be held to share emerging findings from stakeholder and to identify training needs in ECs.

Publications

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