'Be Seen: an arts-led participatory approach to understanding 'big data' in young people's mental health and use of images by young people
Lead Research Organisation:
Swansea University
Department Name: Institute of Life Science Medical School
Abstract
'Big data' is a buzzword in many areas of our lives. The rapid linkage of information from a wide range of sources - health, social media- has resulted in hope for a new era of research into young people's mental health. The Adolescent Mental Health Data Platform (ADP) aims to harness this step-change bringing together multiple sources of 'big data' anonymously and securely in one place, protecting young people's privacy. The data is made 'research ready'-it doesn't need tidying or cleaning-so approved researchers can deliver results in a timely way.
This is all great but working with young people from diverse backgrounds, who can be hard to reach, needs to be a central part of this new era- so they can express their feelings about their data, often created as they go about their daily lives, being used for research and influence the questions being asked. We have made a start on this working with paid student interns (A level and University), MQ's Young People's Advisory Group and creating ADP Ambassadors. As part of the ADP platform we also developed the 'Be Heard' initiative. This brings together the voices of young people affected by mental health issues and directs the type of content we create for the page- such as a video about how we anonymise data made by young people for young people, who asked for it to be made. We were surprised they wanted to know those details but that's the point!
This engagement work has also highlighted the quickly changing nature of the way young people communicate, particularly online. Image-based platforms have replaced the once popular forums. Young people are keen to share their stories and now do this predominantly through imagery (both photography and moving images/ videos). This project will bring young people together with professionals from arts, data science and medicine to develop the 'Be Heard' initiative into 'Be Seen.' A series of workshops will be held with young people aged 16-24. These workshops will equip young people with the creative thinking skills in terms of how they want to be seen and include discussions around the use of their data. We will use our real 'big data' projects as examples. Workshop participants will include those who have experienced mental health problems or who have self-harmed. One workshop will be held with young people from the Gypsy and Traveller community and include discussion of a current 'big data' project in their community. Another with Refugee and Asylum Seeker young people.
The workshops will enable young people to be more analytical about their own creative stories. Issues such as ownership of these images and the tension between the intent behind a post and it's interpretation by those viewing it will be talked about. These workshops will also explore alternatives to photography including filmmaking and creative spaces in virtual reality. Young people's perspectives will steer the direction of the project.
Following these workshops researchers will work one-to-one with young people should they wish. This will include young people who have experienced self-harm and mental health issues to create pieces of artwork. Through this one-on-one work, alternatives to photography will be explored and young people will be equipped with the tools to manage any tension between intent and interpretation and to create imagery as catharsis without increasing risk to themselves or others. Stringent safety criteria will be employed. No graphic imagery will be used and instead abstract alternatives such as virtual or augmented reality spaces will be explored.
The artwork created by these young people will be showcased in an online exhibition and film. The exhibition will be open to the public and will highlight the critical thinking and skills covered in the creation of pieces. The exhibition will also aim to raise awareness of issues around the use of 'big data' and narratives through images, facilitate open talking and reduce stigma.
This is all great but working with young people from diverse backgrounds, who can be hard to reach, needs to be a central part of this new era- so they can express their feelings about their data, often created as they go about their daily lives, being used for research and influence the questions being asked. We have made a start on this working with paid student interns (A level and University), MQ's Young People's Advisory Group and creating ADP Ambassadors. As part of the ADP platform we also developed the 'Be Heard' initiative. This brings together the voices of young people affected by mental health issues and directs the type of content we create for the page- such as a video about how we anonymise data made by young people for young people, who asked for it to be made. We were surprised they wanted to know those details but that's the point!
This engagement work has also highlighted the quickly changing nature of the way young people communicate, particularly online. Image-based platforms have replaced the once popular forums. Young people are keen to share their stories and now do this predominantly through imagery (both photography and moving images/ videos). This project will bring young people together with professionals from arts, data science and medicine to develop the 'Be Heard' initiative into 'Be Seen.' A series of workshops will be held with young people aged 16-24. These workshops will equip young people with the creative thinking skills in terms of how they want to be seen and include discussions around the use of their data. We will use our real 'big data' projects as examples. Workshop participants will include those who have experienced mental health problems or who have self-harmed. One workshop will be held with young people from the Gypsy and Traveller community and include discussion of a current 'big data' project in their community. Another with Refugee and Asylum Seeker young people.
The workshops will enable young people to be more analytical about their own creative stories. Issues such as ownership of these images and the tension between the intent behind a post and it's interpretation by those viewing it will be talked about. These workshops will also explore alternatives to photography including filmmaking and creative spaces in virtual reality. Young people's perspectives will steer the direction of the project.
Following these workshops researchers will work one-to-one with young people should they wish. This will include young people who have experienced self-harm and mental health issues to create pieces of artwork. Through this one-on-one work, alternatives to photography will be explored and young people will be equipped with the tools to manage any tension between intent and interpretation and to create imagery as catharsis without increasing risk to themselves or others. Stringent safety criteria will be employed. No graphic imagery will be used and instead abstract alternatives such as virtual or augmented reality spaces will be explored.
The artwork created by these young people will be showcased in an online exhibition and film. The exhibition will be open to the public and will highlight the critical thinking and skills covered in the creation of pieces. The exhibition will also aim to raise awareness of issues around the use of 'big data' and narratives through images, facilitate open talking and reduce stigma.
Technical Summary
The Adolescent Mental Health Data Platform curates 'research ready big data'. A pivotal part of the platform is engagement with young people. This project aims to develop the existing 'Be Heard' initiative into 'Be Seen' reflecting the increasing preference of young people to use images to express their mental health. Our vision is for young people's voices to 'be seen' and influence the use of their data and the public conversation on their use of images.
This project will partner young people and cross-disciplanary researchers, using an arts-led participatory design, to explore these issues, story-telling and embodiment using imagery. A series of workshops will be held to equip young people with creative and critical analysis skills. We will explore alternatives to photography such as virtual reality and filmmaking.
Researchers will work with young people from a range of backgrounds (Asylum Seekers, those with a history of self-harm, Gypsy Travellers). We will work with individuals to develop pieces of artwork. Alternatives to photographs, e.g. abstract 3D virtual reality environments, and archived historical images will be explored. Participants will complete standardised measures designed to capture levels of distress over the course of the study. Participants will be asked about their history of creating, sharing and viewing images. An exhibition displaying the pieces created and a video will be disseminated online.
Semi-structured interviews will be conducted to gain feedback from work-shop participants involved in the exhibition. Feedback on the video will be collected via an online survey. Both aim to analyse the project's impact; whether the images represent lived experience; any impact on wellbeing and whether the creation or viewing of such images could have a therapeutic benefit. We will co-produce an online toolkit to support the use of images to tell stories based on project findings. Results will inform future research, policy and practice.
This project will partner young people and cross-disciplanary researchers, using an arts-led participatory design, to explore these issues, story-telling and embodiment using imagery. A series of workshops will be held to equip young people with creative and critical analysis skills. We will explore alternatives to photography such as virtual reality and filmmaking.
Researchers will work with young people from a range of backgrounds (Asylum Seekers, those with a history of self-harm, Gypsy Travellers). We will work with individuals to develop pieces of artwork. Alternatives to photographs, e.g. abstract 3D virtual reality environments, and archived historical images will be explored. Participants will complete standardised measures designed to capture levels of distress over the course of the study. Participants will be asked about their history of creating, sharing and viewing images. An exhibition displaying the pieces created and a video will be disseminated online.
Semi-structured interviews will be conducted to gain feedback from work-shop participants involved in the exhibition. Feedback on the video will be collected via an online survey. Both aim to analyse the project's impact; whether the images represent lived experience; any impact on wellbeing and whether the creation or viewing of such images could have a therapeutic benefit. We will co-produce an online toolkit to support the use of images to tell stories based on project findings. Results will inform future research, policy and practice.
Planned Impact
Young people
The primary goal of this project is to engage young people in a number of important issues related to the use of their data and their use of imagery online to express their mental health, and for researchers to learn from their experience. We intend that the exhibition and film will reach a wide audience and inform future research and educational programmes related to helping young people navigate the online world and image-based media. This promise of disrupting current perspectives by true partnership between young people and professionals from across disciplines- arts and humanities, data science, clinical- using digital forms of expression though imagery (the preferred mode of communication in young people) aligns strongly with the UKRI's priority area Technology Touching Life.
More broadly the online toolkit to support young peoples' use of images to tell their stories based on project findings will foster a greater understanding of intent and interpretation in young people and influence behaviour online helping young people navigate the online world and image-based media.
Parents, Carers and Society
Parents, carers and society will benefit from the broader impacts on society through improved life chances for children and young people (e.g. social, educational and occupational) and reduced costs to society (e.g. through health care needs that may otherwise persist into adulthood) through healthier behaviours online and personal development of young people. Dissemination materials and images will raise awareness regarding young people's online activity and their use of imagery potentially supporting more open dialogue.
Policy
This project will go on to inform policy and practice related to self-harm imagery. This may encompass informing guidelines for internet service providers and social media platforms on appropriate posting restrictions that prioritise safety without increasing stigma or reducing possible positive impacts of some kinds of imagery (e.g. creative content or photos showing scars particularly those related to recovery).
Practice
There could also be implications for clinical practice. It has previously been suggested that clinicians should routinely ask about internet use in relation to self-harm as part of their assessment. The results of this project may have implications for further research into the use of creative imagery as an intervention for self-harm that could be potentially applied both in clinical and online settings (provided appropriate monitoring and safety precautions were in place).
Data Scientists
Both the researchers involved, and the wider data science community will be informed regarding young people's feelings about the use of their data. This is important given issues around the ethics of using personal but publicly available social media data. The positive benefits and knowledge transfer of working with young people will be evidenced and translate to closer working in future projects.
The primary goal of this project is to engage young people in a number of important issues related to the use of their data and their use of imagery online to express their mental health, and for researchers to learn from their experience. We intend that the exhibition and film will reach a wide audience and inform future research and educational programmes related to helping young people navigate the online world and image-based media. This promise of disrupting current perspectives by true partnership between young people and professionals from across disciplines- arts and humanities, data science, clinical- using digital forms of expression though imagery (the preferred mode of communication in young people) aligns strongly with the UKRI's priority area Technology Touching Life.
More broadly the online toolkit to support young peoples' use of images to tell their stories based on project findings will foster a greater understanding of intent and interpretation in young people and influence behaviour online helping young people navigate the online world and image-based media.
Parents, Carers and Society
Parents, carers and society will benefit from the broader impacts on society through improved life chances for children and young people (e.g. social, educational and occupational) and reduced costs to society (e.g. through health care needs that may otherwise persist into adulthood) through healthier behaviours online and personal development of young people. Dissemination materials and images will raise awareness regarding young people's online activity and their use of imagery potentially supporting more open dialogue.
Policy
This project will go on to inform policy and practice related to self-harm imagery. This may encompass informing guidelines for internet service providers and social media platforms on appropriate posting restrictions that prioritise safety without increasing stigma or reducing possible positive impacts of some kinds of imagery (e.g. creative content or photos showing scars particularly those related to recovery).
Practice
There could also be implications for clinical practice. It has previously been suggested that clinicians should routinely ask about internet use in relation to self-harm as part of their assessment. The results of this project may have implications for further research into the use of creative imagery as an intervention for self-harm that could be potentially applied both in clinical and online settings (provided appropriate monitoring and safety precautions were in place).
Data Scientists
Both the researchers involved, and the wider data science community will be informed regarding young people's feelings about the use of their data. This is important given issues around the ethics of using personal but publicly available social media data. The positive benefits and knowledge transfer of working with young people will be evidenced and translate to closer working in future projects.
Publications
Khanom A
(2021)
Asylum seekers' and refugees' experiences of accessing health care: a qualitative study.
in BJGP open
| Title | Workshops and Exhibiton |
| Description | The workshops enabled young people to be more analytical about their own creative stories. Issues such as ownership of these images and the tension between the intent behind a post and its interpretation by those viewing it can now be talked about. These workshops also explored alternatives to photography including filmmaking and creative spaces in virtual reality. The artwork created by these young people was showcased in an exhibition and film. The exhibition was open to the public and highlighted the critical thinking and skills covered in the creation of pieces. The exhibition also aimed to raise awareness of issues around the use of 'big data' and narratives through images, facilitated open talking, and reduced stigma. |
| Type Of Art | Artistic/Creative Exhibition |
| Year Produced | 2021 |
| Impact | This engagement project benefited academic researchers across a broad range of disciplines from arts and humanities to data science and medicine by: 1. Fostering new and emerging interdisciplinary collaborations in order to develop an understanding of real-world real-time mental health problems in young people 2. Engagement with stakeholders (including children and young people with relevant lived experience or from vulnerable groups) and industrial partners, providing new pathways to impact for future research 3. Cemented relationships to develop novel, interdisciplinary research projects 4. Developed the skills and knowledge of Early Career Researchers 5. An exhibition accessible to interdisciplinary academic and non-academic audiences (with international reach) 6. Academic publications that result from the interdisciplinary participatory design and findings 7. Knowledge transfer of current up to date knowledge and understanding of young people's perspectives (including those from communities that can be challenging to engage) on the use of their data and the use of images to express themselves 8. Development relationships with young people from diverse communities who may be open to participating in future studies 9. The development of safe and effective tools to allow individuals to use images to tell their stories may have the potential for therapeutic intervention and lead to future novel research studies and trials. 10. The insights gained from young people related to the use of their data will inform future use of their routinely collected data for computational research studies but also social media data. 11. Highlighted that many researchers use young people's social media data without ethical approval since it is publicly available. |
| URL | https://www.youtube.com/watch?v=I8N5_lmUxHI |
| Description | Evidenced based mental health and wellbeing resources made by young people for young people in the COVID-19 context |
| Amount | £235,344 (GBP) |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2020 |
| End | 01/2022 |
| Description | Health Experiences of Asylum seekers and Refugees: how well are their interpretation needs met? (HEAR 2) |
| Amount | £229,988 (GBP) |
| Funding ID | RfPPB-19-1682 |
| Organisation | Health and Care Research Wales |
| Sector | Public |
| Country | United Kingdom |
| Start | 10/2020 |
| End | 09/2022 |
| Description | 'Do the Right Thing', Cochrane Theatre, Southampton Row, London. - 27th January 2019 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | debate regarding 'Do the Right Thing', Cochrane Theatre, Southampton Row, London. |
| Year(s) Of Engagement Activity | 2019 |
| Description | 'How do my feelings become numbers?' virtual invitation to talk to the Turing Data Science for Mental Health Interest Group. - 16th April 2020 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | presentation/ talk - 'How do my feelings become numbers?' virtual invitation to talk to the Turing Data Science for Mental Health Interest Group |
| Year(s) Of Engagement Activity | 2020 |
| Description | Chaired the Racism and the mental health of children & young people in the UK: What do we need to know to make a difference? Emerging Minds. - 21st January 2021 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | hosting workshop for Chaired the Racism and the mental health of children & young people in the UK: What do we need to know to make a difference? Emerging Minds |
| Year(s) Of Engagement Activity | 2021 |
| Description | Invited to speak at the online National Suicide Prevention Conference 2022. - 20th April 2022 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | Invited to speak at the online National Suicide Prevention Conference 2022 |
| Year(s) Of Engagement Activity | 2022 |
| Description | MRC - #BeSeen exhibition Swansea |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Ann attended an exhibition for the MRC - #BeSeen Project in Swansea Volcano Theatre, which displayed the digital creative works achieved by the young people who had engaged with the workshops run earlier in the year. |
| Year(s) Of Engagement Activity | 2021 |
| Description | MRC - #BeSeen workshop - Plymouth |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Ann attended workshops for the MRC - #BeSeen Project engaging with young people on the topic of mental health. The young people attending used VR equipment to express views on mental health in a creative environment. There were also discussions about the impact of media on young peoples mental health. |
| Year(s) Of Engagement Activity | 2021 |
| Description | MRC - #BeSeen workshop - Swansea |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Ann attended workshops for the MRC - #BeSeen Project engaging with young people on the topic of mental health. The young people attending used VR equipment to express views on mental health in a creative environment. There were also discussions about the impact of media on young peoples mental health. |
| Year(s) Of Engagement Activity | 2021 |
| Description | MRC - Workshop for Young People from Leaders Unlocked - 2023 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | MRC - Workshop for Young People from Leaders Unlocked - 2023 |
| Year(s) Of Engagement Activity | 2023 |
| Description | MRC Workshop/ Interviews with young people from refugee asylum seeker community and young people from the transgender community - 2022 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | VR workshops and interviews takig place in England and Wales with young people from refugee asylum seeker commuity and those of general background. also included young people from the transgender community with MRC |
| Year(s) Of Engagement Activity | 2022 |
| Description | Mental Health Roundtable: Creating united mental health environments with communities, Bevan Commission. - 18th September 2020 |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | roundtable discussion - Mental Health Roundtable: Creating united mental health environments with communities, Bevan Commission |
| Year(s) Of Engagement Activity | 2020 |
| Description | Presentation to Welsh Government Education Policy: Understanding the mental health of pupils Educated in Other Than At School (EOTAS) A Retrospective e-cohort study utilising the Secure Anonymised Information Linkage (SAIL) electronic databank. - 2023 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Understanding the mental health of pupils Educated in Other Than At School (EOTAS) A Retrospective e-cohort study utilising the Secure Anonymised Information Linkage (SAIL) electronic databank. Presentation to Welsh Government Education Policy Administrative Data Research Centres 2018 |
| Year(s) Of Engagement Activity | 2023 |
| Description | Presentation to Welsh Government health Policy: Understanding the mental health of pupils Educated in Other Than At School (EOTAS) A Retrospective e-cohort study utilising the Secure Anonymised Information Linkage (SAIL) electronic databank. - 2023 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Presentation to Welsh Government health Policy: Understanding the mental health of pupils Educated in Other Than At School (EOTAS) A Retrospective e-cohort study utilising the Secure Anonymised Information Linkage (SAIL) electronic databank. - 2023 Administrative Data Research Centres 2018 |
| Year(s) Of Engagement Activity | 2023 |
| Description | Speaker at the Shifting the goal posts: how racism in sport impacts mental health? Hope not Hate webinar. - 22nd March 2022 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | Webinar - Speaker at the Shifting the goal posts: how racism in sport impacts mental health? Hope not Hate webinar |
| Year(s) Of Engagement Activity | 2022 |
| Description | Speaker at the suicidal ideation webinar. - 31st March 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | Speaker at the suicidal ideation webinar |
| Year(s) Of Engagement Activity | 2022 |
| Description | The New Suicide Prevention Alliance Conference: Reaching further and Deeper into Communities. - 24th January 2023 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | The New Suicide Prevention Alliance Conference: Reaching further and Deeper into Communities |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK Biological Security Strategy Roundtable: Pandemics and Emerging Infectious Diseases. - 19th April 2022 |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | Meeting regarding UK Biological Security Strategy Roundtable: Pandemics and Emerging Infectious Diseases |
| Year(s) Of Engagement Activity | 2022 |
| Description | Virtual Q&A session with year 9 Didcot Girls - Debating Mental Health project. - 25th November 2020 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | debate - Virtual Q&A session with year 9 Didcot Girls - Debating Mental Health project |
| Year(s) Of Engagement Activity | 2020 |