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.
 
Description The main findings from the network interactions with the Young People (YP), the Early Career Researchers (ECR) and the stakeholders are that there is a high demand for digital mental health. Everyone we engaged with recognized the need to upscale mental health support for youth and perceived digital mental health as a great tool to do so. The ECRs/YP made it clear that digital mental health is welcomed for the spectrum of mental health: from treatment for disorders to assistance in wellbeing. There are structural and legal challenges that hinder access and use.
Some of the identified factors include:
1. Poor internet network causes disruptions to the programme of therapy sessions
2. Expensive data charges limit YP interactions on the digital platforms.
3. Online platforms are impersonal
4. Online platforms are susceptible to the threat of free riders
5. YP participation on online platforms demands a different set of conversational triggers to get them comfortable to open up for therapy
6. YPs in rural areas are not fully exposed to digital platforms and amongst others have limited digital literacy.
7. Mental health factors also affect the digital mental health therapies such as stigma, privacy, confidentiality and safety concerns

Another important finding is that the young people highlighted that most existing digital innovation in mental health lacks context and is developed mostly in the West. This makes it hard for YP in Africa to utilise such a platform even when they have the access. An ethnographic understanding of recipients is key to engaging them in developing context relevant innovations. This will be the focus of future research within the EMDIYA network.
Exploitation Route The outcome can be used to obtain more research funding within their country teams or even at network levels.
Developers of digital mental health innovation can use the opinions of the EMDIYA team when they develop innovation targeted for young people in Africa.
Sectors Digital/Communication/Information Technologies (including Software),Education,Healthcare
URL https://www.tiktok.com/@emdiya
 
Description There are two clear emerging impacts of our network: advice in regards to digital mental health applications and research; and best practice guidance in providing a platform for young people to dialogue with academics and technology developers. EMDIYA has set up a platform where young people, early career researchers, digital innovators, regulators, civic society, patients and carers, can meet and discuss ethical issues in digital innovations for the young people in Africa. These network meetings across the EMDIYA sites and at consortium level are forums for discussing how to build responsible and relevant innovation for mental health. The discussions with innovators is showing that most innovators are market oriented and through our interactions have come to realise the need to develop more responsible and relevant AI that will actually help the African Young Person. For example, in Ghana the engagement between young people and digital innovators has led to discussions on developing relevant low cost mental health technology that can assist young rural people. Another example of this is the working group set up in September 2020 by an EMDIYA Early Career Researcher (ECR) to design a strategy to include young people informing the various stages of digital innovations development as well as to address emerging ethical issues in digital innovations, including how to embed consent within the digital application, how to overcome the risk of participants becoming a target as the recipient of a smartphone with the digital technology, and safeguarding against the stigma associated with COVID-19 track and trace innovations. Members of this group work in a very diverse range of projects, such as: Parenting for lifelong health digital, a collaborative project with the University of Oxford and UNICEF; Digital delivery of behavioural activation to overcome depression and facilitate social and economic transitions of adolescents in LMICs; and Digital HIV care for young people amidst the COVID-19 pandemic (Bidirectional, Upbeat communication and Differentiated, Distanced care for Young people), and the Accelerating Achievement for Africa's Adolescent Hub. Bringing together this broad range of expertise allowed us to develop guidance on engagement with young people ensuring this is appropriate and relevant for African youth. As the project evolves through the next few months we hope to achieve case study papers on the emerging ethical issues, and publish guidance on how to co-create digital mental health innovations with young people for the different stakeholders.
First Year Of Impact 2020
Sector Digital/Communication/Information Technologies (including Software),Education
Impact Types Policy & public services
 
Description Influence mental health awareness training by the World Health Organization in Digital Mental Health Ethics , for the Zimbabwean healthcare worker programme
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Influence training of Early Career Researchers in Digital Mental Health Ethics
Geographic Reach Africa 
Policy Influence Type Influenced training of practitioners or researchers
Impact The network developed a structured mentoring programme to ensure that the 17 Early Career Researchers in EMDIYA have the maximum academic benefit from being part of the network. The programme includes, (1) Direct Mentorship from a selected expert , (2) Peer-to-Peer Mentorship through interaction amongst ECRs across Africa , (3) Structured Courses and (4) Industry-Related Placements. In 2020 despite the COVID-19 restrictions all the ECRs completed certificate course in ICT Tech for Good course. The course looks at the ways in which stakeholders are coming together to answer big questions about what our future will look like in a hyper-digitized world. It also addresses the new challenges that technology can introduce, such as privacy, data management, risks to cybersecurity, e-waste, and the widening of social divides. This has a direct impact on how ECRs are trained in ethical reflection on digital innovation in mental health.
 
Description EMDIYA Network 
Organisation Centre for Sexual Health and HIV AIDS Research Zimbabwe (CeSHHAR Zimbabwe)
Country Zimbabwe 
Sector Charity/Non Profit 
PI Contribution The University of Oxford has created this Africa-wide multidisciplinary network of experts in mental health , adolescent health , public health , bioethics and technology development to form a research and advocacy platform and partnership to tackle ethical reflection of digital innovations for young people in Africa. The network has created robust ECR programmes, Young Peoples Advisory Groups , Empirical Research and Network building programmes.
Collaborator Contribution During this phase of the EMDIYA network , the partners have all contributed working space for the EMDIYA phase 1 programme free of charge. They have allowed access for the Early Career Researchers to utilize their resources for the benefit of the EMDIYA network. They have also provided extra funding through other sources for all ECRs to be able to work on the EMDIYA network activities. They have leveraged their existing networks and resources to form the Young People's Advisory groups in their respective countries and also across the network.
Impact The main output is the building of a platform where there is direct interaction between the technology developers of health related applications, researchers , internet service providers , carers, regulators and young people. EMDIYA is also shaping and influencing the careers of the young people involved in digital mental health at all levels. EMDIYA has helped shape the training of early career researchers in the technology development , bioethics , philosophy , psychiatry , psychology and media. We have infused ethical reflection in their curriculums. This is a multidisciplinary network spanning the disciplines of , bioinformatics, AI developers , bioethics , philosophy , media production, public health , mental health, technology industry, internet service providers and adolescent health.
Start Year 2020
 
Description EMDIYA Network 
Organisation Makerere University
Country Uganda 
Sector Academic/University 
PI Contribution The University of Oxford has created this Africa-wide multidisciplinary network of experts in mental health , adolescent health , public health , bioethics and technology development to form a research and advocacy platform and partnership to tackle ethical reflection of digital innovations for young people in Africa. The network has created robust ECR programmes, Young Peoples Advisory Groups , Empirical Research and Network building programmes.
Collaborator Contribution During this phase of the EMDIYA network , the partners have all contributed working space for the EMDIYA phase 1 programme free of charge. They have allowed access for the Early Career Researchers to utilize their resources for the benefit of the EMDIYA network. They have also provided extra funding through other sources for all ECRs to be able to work on the EMDIYA network activities. They have leveraged their existing networks and resources to form the Young People's Advisory groups in their respective countries and also across the network.
Impact The main output is the building of a platform where there is direct interaction between the technology developers of health related applications, researchers , internet service providers , carers, regulators and young people. EMDIYA is also shaping and influencing the careers of the young people involved in digital mental health at all levels. EMDIYA has helped shape the training of early career researchers in the technology development , bioethics , philosophy , psychiatry , psychology and media. We have infused ethical reflection in their curriculums. This is a multidisciplinary network spanning the disciplines of , bioinformatics, AI developers , bioethics , philosophy , media production, public health , mental health, technology industry, internet service providers and adolescent health.
Start Year 2020
 
Description EMDIYA Network 
Organisation Moi University
Country Kenya 
Sector Academic/University 
PI Contribution The University of Oxford has created this Africa-wide multidisciplinary network of experts in mental health , adolescent health , public health , bioethics and technology development to form a research and advocacy platform and partnership to tackle ethical reflection of digital innovations for young people in Africa. The network has created robust ECR programmes, Young Peoples Advisory Groups , Empirical Research and Network building programmes.
Collaborator Contribution During this phase of the EMDIYA network , the partners have all contributed working space for the EMDIYA phase 1 programme free of charge. They have allowed access for the Early Career Researchers to utilize their resources for the benefit of the EMDIYA network. They have also provided extra funding through other sources for all ECRs to be able to work on the EMDIYA network activities. They have leveraged their existing networks and resources to form the Young People's Advisory groups in their respective countries and also across the network.
Impact The main output is the building of a platform where there is direct interaction between the technology developers of health related applications, researchers , internet service providers , carers, regulators and young people. EMDIYA is also shaping and influencing the careers of the young people involved in digital mental health at all levels. EMDIYA has helped shape the training of early career researchers in the technology development , bioethics , philosophy , psychiatry , psychology and media. We have infused ethical reflection in their curriculums. This is a multidisciplinary network spanning the disciplines of , bioinformatics, AI developers , bioethics , philosophy , media production, public health , mental health, technology industry, internet service providers and adolescent health.
Start Year 2020
 
Description EMDIYA Network 
Organisation University of Ghana
Country Ghana 
Sector Academic/University 
PI Contribution The University of Oxford has created this Africa-wide multidisciplinary network of experts in mental health , adolescent health , public health , bioethics and technology development to form a research and advocacy platform and partnership to tackle ethical reflection of digital innovations for young people in Africa. The network has created robust ECR programmes, Young Peoples Advisory Groups , Empirical Research and Network building programmes.
Collaborator Contribution During this phase of the EMDIYA network , the partners have all contributed working space for the EMDIYA phase 1 programme free of charge. They have allowed access for the Early Career Researchers to utilize their resources for the benefit of the EMDIYA network. They have also provided extra funding through other sources for all ECRs to be able to work on the EMDIYA network activities. They have leveraged their existing networks and resources to form the Young People's Advisory groups in their respective countries and also across the network.
Impact The main output is the building of a platform where there is direct interaction between the technology developers of health related applications, researchers , internet service providers , carers, regulators and young people. EMDIYA is also shaping and influencing the careers of the young people involved in digital mental health at all levels. EMDIYA has helped shape the training of early career researchers in the technology development , bioethics , philosophy , psychiatry , psychology and media. We have infused ethical reflection in their curriculums. This is a multidisciplinary network spanning the disciplines of , bioinformatics, AI developers , bioethics , philosophy , media production, public health , mental health, technology industry, internet service providers and adolescent health.
Start Year 2020
 
Description EMDIYA Network 
Organisation University of KwaZulu-Natal
Country South Africa 
Sector Academic/University 
PI Contribution The University of Oxford has created this Africa-wide multidisciplinary network of experts in mental health , adolescent health , public health , bioethics and technology development to form a research and advocacy platform and partnership to tackle ethical reflection of digital innovations for young people in Africa. The network has created robust ECR programmes, Young Peoples Advisory Groups , Empirical Research and Network building programmes.
Collaborator Contribution During this phase of the EMDIYA network , the partners have all contributed working space for the EMDIYA phase 1 programme free of charge. They have allowed access for the Early Career Researchers to utilize their resources for the benefit of the EMDIYA network. They have also provided extra funding through other sources for all ECRs to be able to work on the EMDIYA network activities. They have leveraged their existing networks and resources to form the Young People's Advisory groups in their respective countries and also across the network.
Impact The main output is the building of a platform where there is direct interaction between the technology developers of health related applications, researchers , internet service providers , carers, regulators and young people. EMDIYA is also shaping and influencing the careers of the young people involved in digital mental health at all levels. EMDIYA has helped shape the training of early career researchers in the technology development , bioethics , philosophy , psychiatry , psychology and media. We have infused ethical reflection in their curriculums. This is a multidisciplinary network spanning the disciplines of , bioinformatics, AI developers , bioethics , philosophy , media production, public health , mental health, technology industry, internet service providers and adolescent health.
Start Year 2020
 
Description EMDIYA Network 
Organisation University of Zimbabwe
Country Zimbabwe 
Sector Academic/University 
PI Contribution The University of Oxford has created this Africa-wide multidisciplinary network of experts in mental health , adolescent health , public health , bioethics and technology development to form a research and advocacy platform and partnership to tackle ethical reflection of digital innovations for young people in Africa. The network has created robust ECR programmes, Young Peoples Advisory Groups , Empirical Research and Network building programmes.
Collaborator Contribution During this phase of the EMDIYA network , the partners have all contributed working space for the EMDIYA phase 1 programme free of charge. They have allowed access for the Early Career Researchers to utilize their resources for the benefit of the EMDIYA network. They have also provided extra funding through other sources for all ECRs to be able to work on the EMDIYA network activities. They have leveraged their existing networks and resources to form the Young People's Advisory groups in their respective countries and also across the network.
Impact The main output is the building of a platform where there is direct interaction between the technology developers of health related applications, researchers , internet service providers , carers, regulators and young people. EMDIYA is also shaping and influencing the careers of the young people involved in digital mental health at all levels. EMDIYA has helped shape the training of early career researchers in the technology development , bioethics , philosophy , psychiatry , psychology and media. We have infused ethical reflection in their curriculums. This is a multidisciplinary network spanning the disciplines of , bioinformatics, AI developers , bioethics , philosophy , media production, public health , mental health, technology industry, internet service providers and adolescent health.
Start Year 2020
 
Description Global mapping of aspirations and barriers for youth participation in wellbeing initiatives 
Organisation UNICEF
Country United States 
Sector Public 
PI Contribution This joint project aimed to map young people's aspirations, spheres of influence, training needs and barriers for engagement with metal health initiatives. Our team was responsible for designing the project, leading co-production sessions with the Lancet Young Leaders for Global Mental Health, performing data analysis and drafting the paper.
Collaborator Contribution UNICEF was responsible for co-designing the survey, collecting data (via U-Report, UNICEF's social messaging platform), performing preliminary data analysis, and co-drafting the paper. The Lancet Young Leaders for Global Health co-designed the survey and provided input into the draft. One of the YLs, Chantelle Booysen, took a leading role in facilitating the collaboration, and also presented the findings at the Grand Challenges Canada Conference.
Impact Pavarini, G., Booysen, C., Jain, T., Lai, J., Manku, K., Farmer, M., Lancet Young Leaders for Global Mental Health, Singh, I. Youth Perspectives on Transforming Global Mental Health: A Cross-Sectional Survey of over 40,000 Young People in LMICs. Under review at Adolescent Heath.
Start Year 2020
 
Description WISH 2020 Forum on Mental Health and Digital Technologies advisory group 
Organisation World Innovation Summit For Health (WISH)
Country Qatar 
Sector Charity/Non Profit 
PI Contribution Invited member to the Advisory Board at the WISH 2020 Forum on Mental Health and Digital Technologies. Together with Dr Gabriela Pavarini, I've coordinated youth integration into this work by: a) facilitating a consultation with the Lancet Young Leaders for Global Mental Health and their input into the written summary of their contributions, and b) providing training and input for one of the Lancet Young Leaders (Chinwendu Ukachukwu) to join the panel that launched the report.
Collaborator Contribution The WISH Advisory Board included leading researchers in digital mental health; they were responsible for providing expert advice on the state of art in digital mental health and make recommendations for future directions in the field.
Impact Roland J, Lawrance E, Insel T, Christensen H. The digital mental health revolution: Transforming care through innovation and scale-up. Doha, Qatar: World Innovation Summit for Health, 2020. ISBN: 978-1-913991-00-5
Start Year 2020
 
Description Digital Mental Health for Rural Young People in KwaZulu Natal, South Africa 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Study participants or study members
Results and Impact A series of three consecutive engagement events were held with the Rural Young People in the South African EMDIYA site. A maximum of 20 young people were invited to each event in three different locations. The events were meant to raise awareness on mental health literacy and digital literacy. The workshops had youth friendly activities such as poetry competitions , drama , music competitions and story telling as part of the learning process. They also went through using an online mental health application to introduce them to the concept of digital mental health. The young people expressed their concerns over the use of digital tools from a rural young person's perspective. They also expressed that they will need more workshops to fully understand how to take advantage of the digital revolution for their own mental health.
Year(s) Of Engagement Activity 2021
 
Description Digital Mental Health for Young People in the ZVANDIRI Programme (Zimbabwe) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact The Young People's Advisory Group (YPAG) in Zimbabwe managed to arrange a workshops on the mental health needs of Young people living with HIV and AIDS in Dzivarasekwa community hall Harare, Zimbabwe. The YPAG members held roundtable discussions on the various aspects of mental health, digital literacy , mental health literacy and the ethics of digital mental health. They used games , story telling and focus group discussions to ensure full engagement and the young people were able to freely share their stories. The YPAG members reported an increased awareness of risks and benefits of digital mental health for young people from the perspective of an African young person. YP living with HIV and AIDS identified discrimination and poverty some there are facing mental health due to Covid 19 as main challenges they face in their community. They also highlighted issues of digital exclusion as some noted that they lack access to smart phones , computers ad high speed internet.
Year(s) Of Engagement Activity 2020
URL https://neurogene.org/groups/emdiya/
 
Description EMDIYA Digital Campaign 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact This campaign was a global engagement with mental health ethics, as well as vision and power of young people's voices in the future of digital mental health. This digital campaign was created and led by a team of 29 ECRs and YPAG across the 5 African countries. The young people wanted to share contextual and accessible information on digital mental health and the ethical issues that are important for them. The digital campaign began with a contextual introduction to mental health, digital mental health innovations, and the digital mental health regulations across the countries. This included videos, infographics, and a comic. They were hugely successful with over 17,000 impressions, 2,300 views, and 600 engagements (comments/replies, shares/retweets, and likes).
Year(s) Of Engagement Activity 2021
URL https://neurogene.org/groups/emdiya/
 
Description EMDIYA-KENYA STAKEHOLDERS' WORKSHOP 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Policymakers/politicians
Results and Impact The EMDIYA network organized this workshop in order to share findings with a small group of key stakeholders . The objectives of the workshop were threefold: i) to disseminate the findings of the EMDIYA Kenya project, ii) validate the findings with key stakeholders; and, iii) get advise on the way forward in view of the findings.
One of the Early Career Researchers, Dr. David Nderitu Wanjeri, presented on the EMDIYA digital campaign, an initiative of EMDIYA Early Career Researchers (ECRs) and Young People Advisory Group (YPAGs) to inform and engage stakeholders in the ethics of mental health among young people in the participating countries indicated above. He also shared the social media accounts for the same and displayed various modes of display to be used in the campaign such as scripts and videos. He also highlighted the thematic areas of the program such as Mental Health (MH) conditions in Digital Mental Health (DMH), ethics and engaging young people in DMH. He stated that DMH innovations promote wellbeing, measure and test physical reactions and provide treatment. He raised a concern that discrete regulations that addressed specific aspects of MH are not harmonized. He recognized the need to regulate DMH due to lack of evidence, failure to prioritize security concerns and breach of the privacy and confidentiality of users. He gave recommendations to ensure certification and adherence to clinical concerns in DMH. He also raised some ethical concerns in DMH like confidentiality, affordability and accessibility and informed consent. He outlined various ways to engage young people in DMH through research, activities they like and encouraging them to take part in policy
making. After this presentation, there was an open discussion on engaging the youth in DMH.

The following are some of the issues that were raised in the open discussion:
*It is not only the youth who are at risk of mental health illnesses. Everyone is. A major contributing factor to mental health illnesses is boredom. We therefore need to find ways
to deal with this so that it does not end up being a mental health problem. Also, the youth need to be educated on the content to share on social media to avoid cyber bullying.
*Structural violence is an area of concern and needs to be addresses as a mental health issue.
*Human beings are social beings. There is need to promote peer to peer support but also to have conservations to bridge the gap between intergenerational relations.
*Therapy should not be taken into digital space; DMH is better used as a first aid to mental health illnesses.
*There was concern that in Kenya we are too keen to legislate anything including legislation of values.
*Another concern was that of technology accepting humans rather that humans accepting technology. There is need to humanize technology to regain control.
*DMH services make therapy lose its meaning as at times they do not provide the actual meaning (non-verbal communication, and variation of tone and feelings may be lost) and
there may be little or no time for elaboration.
*A psychological care giver shared her experience on use of digital platforms. She noted that on social media, most clients want immediate solutions.
*Artificial Intelligence and Natural Language Processing technologies might be solutions to the aforementioned concerns. An algorithm could be developed that can be able to
identify and analyze a person's emotions, tone, language and suggest a possible solution to the mental health condition that they have.
*There are lessons from People Living with HIV, specifically the Determined Resilient Empowered Aids-free Individual campaign. Such initiatives provide more options as pilot
tests for other programs have shown.
*There is need to create awareness, capacity building and advocacy for ethical DMH innovations through involvement of the community and application of individual values in
different aspects of life.
*There is need to introduce psycho-education on the use of digital spaces for mental health in schools.
*Promotion of mental wellbeing on digital spaces could be ensured through partnerships for improvement on quality, accessibility and affordability of such spaces. Blending of
new and old techniques of counselling could help.
*DMH innovators could aspire towards keeping MH at optimal level through promotion of MH, prevention of mental ill health and early intervention

Discussion on Way Forward
Members took time to discuss the way forward for the EMDIYA initiative. Members indicated that the formation of a youth-led Ethics for Mental Health Digital Innovation for Young People in Kenya (EMDIYA - Kenya) Network was a good idea as was aimed by the study. They suggested that the network be formed comprising both young people and older professionals in all relevant fields. The more experienced fellows would be available to mentor and to equip young people with knowledge, skills, and values to take on the Network. The key activities of the Network would be to lobby and advocate for ethics of digital innovations for mental health for young people in Kenya and in Africa as a whole. They raised a need to leverage fun settings to pass messages for mental health, for example like the way Factual Films used in Kenya in the 1970s and 80s. They raised the need to have different IEC materials for the same, bring traditional techniques of passing messages like folk stories and skits back and the use of Human Library, where people share their lived experiences with mental health conditions. Members agreed that the Network would be led by young people. There was a discussion on the network composition and it was agreed that it would comprise of young people themselves, IT experts, mental health service providers, ethicists, target populations and influencers. This
network would also ensure a collaboration with various experts including advocacy groups. For the sustainability of the network, members expressed willingness to meet regularly. Prof Kamaara offered her office to support virtual coordination of the Network for the time being until the Network acquires an office. Prof Lukoye Atwoli urged the young people and ECRs to engage in proposal writing and competitions for grants in order to generate evidence around which to lobby and advocate and for sustainability of the program. He offered to support research initiatives in different ways.
Year(s) Of Engagement Activity 2021
 
Description Ethical Issues in AI and Tech Development in Ghana 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Industry/Business
Results and Impact This activity was aimed at engaging with young people involved in the technology development industry. These will be one of the main stakeholders in the EMDIYA programme. The Activity was in the form of practicing using an online mental health application and having the tech developers pick up any flaws in the system, pick up on ethical issues at each stage of use of the App. The second exercise was a mapping of the digital tools used by African youth to address mental health issues. The last part of the workshop was a presentation on adolescent mental health. This was meant to show the link between adolescent mental health and access to digital mental health. They had very interesting things to say, talking about how religion, culture and stigma affect the understanding of mental health. Others spoke about their lived experiences and work experience in the mental health space. The developers expressed that they had never been exposed to ethics or to issues affecting the African young person and they are willing to develop technology that caters for the needs of a young person in Africa.
Year(s) Of Engagement Activity 2020
URL https://neurogene.org/groups/emdiya/
 
Description Formation of Virtual Young People's Advisory Group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Study participants or study members
Results and Impact The EMDIYA network formed a virtual Young People's Advisory Group (YPAG) to ensure that we have a young-people led network to inform the development of accessible, relevant, and responsible digital mental health innovations to enable improved mental health and wellbeing in young people across Africa. Using a co-production model supported by a capabilities approach, we involved a small group of young people to be the initial seed of Young People who became our EMDIYA Network YPAG.
The EMDIYA YPAG spans five African countries; Ghana, Kenya, South Africa, Uganda and Zimbabwe. The EMDIYA network includes active inclusion of vulnerable young people including urban young people, rural young people, young people living with HIV/AIDS, young LGBTQIA+ community members, young people in tertiary institutions, young survivors of sexual abuse, and young women selling sex. The YPAG has 13 members, 2-3 per country, aged 18 - 25yrs old. Most engagement was virtual, using emails, phone calls, and WhatsApp. Over 8 months we held 6 Zoom calls and 5 WhatsApp meetings at network level. In each country a total of 20 meetings took place (12 virtual and 8 face-to-face). Overall, we had at least 80% attendance for each virtual meeting. The formation of a digital network amidst the pandemic provided the opportunity for young people to connect with each other both within and across 5 African countries.
Year(s) Of Engagement Activity 2020,2021
URL https://neurogene.org/groups/emdiya/
 
Description Uganda Stakeholder workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Undergraduate students
Results and Impact The meeting was a feedback session with network members on recommendations for promoting and enhancing access to digital mental health innovations to young people in Uganda. The discussion was very interactive and lasted more than one hour. Young people gave several suggestions on how to popularize and enhance utilization of DMH interventions in Uganda.
during the feedback session the following issues were discussed :
i. Knowledge, perceptions and experiences of DMH among young people in Uganda.
ii. Key ethical and technical considerations during the development of DMH applications.
iii. Advantages and facilitators of DMH.
iv. Perceived challenges and barriers to access of DMH services by young people.
v. Privacy and data security concerns in DMH.
vi. Mental health interventions and support systems for young people in Uganda
vii. Recommendations for expanding of DMH services to Uganda people in Uganda
Year(s) Of Engagement Activity 2021
 
Description Zimbabwe EMDIYA Stakeholders Meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact A total of 35 stakeholders from various organisations attended the stakeholder's workshop. Key stakeholders to note was representation from Ministry of Health and Child Care Mental Health Department, Technology developers, mental and public health specialists, youth officers and key populations. The purpose of these stakeholders coming together was to fully dissect the topic of digital mental health technologies in the country- the availability of these technologies, awareness of these technologies amongst the young people and other; access, reach and utilization of these technologies; ethical concerns around the utilisation of digital mental health technologies, and challenges and opportunities for development and fair expansion of these technologies for young people.
The workshop started with a presentation on the purpose of the workshop. Thereafter, stakeholders were split into groups to conduct the stakeholder mapping process. The groups were each given different topics to discuss and write down issues of note. Groups gave feedback on each of their given topics and issues presented were taken not of. This session was then followed by a plenary discussion on challenges and opportunities for digital mental health technologies for young people in Zimbabwe.

Meeting highlights:

The workshop was successfully conducted, and issues highlighted by stakeholders during the workshop were as follows:
1. There are several applications that cater for DMH such as, WhatsApp, University portals, flow applications, talk space, and Maisha. However, these applications exclude needs of key populations.
2. There are security and safety concerns of digital mental health applications such as technologies being prone to hackers and viruses.
3. There are concerns around assurance that a qualified person will be responding to the needs of the users
4. There is a lack of understanding around the terms and conditions of digital applications presenting concerns around confidentiality and security of data
5. Lack of resources to use these applications is a key challenge for accessing digital mental health technologies and services.
6. Currently in Zimbabwe there is no regulatory framework for provision of digital mental health and there is also no prioritisation of digital expansion. even though there is lack of regulatory framework there are laws that protect users, however such information is not cascaded to the intended audience.
7. There should be stakeholders, like a local EMDIYA network, who inform on policy and digital mental health technologies development. These key stakeholders should include key populations, youths, social workers, psychologists, counsellors, Ministry of Health and Child Care, Ministry of women and gender, Ministry of Youths, Ministry of ICT, POTRAZ, Ministry of labour and Ministry of social welfare.
8. Young people were invited to be part of the Ministry of Health and Child Care mental health subcommittee on policy.
Year(s) Of Engagement Activity 2021