ART/DATA/HEALTH: Data as creative material for health and wellbeing

Lead Research Organisation: University of Brighton
Department Name: School of Media

Abstract

ART/ DATA/ HEALTH creates an innovative and interdisciplinary process that offers disadvantaged groups and the public new tools, at the intersections of data science with art practice, to approach two key issues in healthy aging and prevention: digital skills and health literacy. There are three main reasons for bringing cultural participation and digital inclusion together for health and wellbeing:

First, there is strong evidence showing that participation in the creative arts can help promote well-being and health in communities, and can be particularly beneficial for disadvantaged groups (in terms of age, disability, income and unemployment). As technologies change, there are new questions that art and humanities research can help us address in relation to health and wellbeing. Arts-based inquiry that involves health data analysis can be an innovative intervention for public health projects.

Second, critical health literacy is considered key to empowerment, as it not only improves people's capacity to use health information, but also helps them gain greater control over life events. But as health promotion and communication moves to a digitised era, health literacy today includes the capacity to efficiently use digital health technologies and being able to critically analyse information presented online. In Britain, 12.6 million people lack digital skills and they are most likely to suffer from poor health, while in most cases they also belong in disadvantaged social groups.

Third, today scientific data and statistics of all sorts are being used in infographics, data journalism, design and art in order to create meaning from the deluge of big data. Data is considered the material of our times. Data-based art can help raise awareness about the ethical, social and cultural issues of personalised medicine, but is however still missing from public health, community-based initiatives.

This Rutherford/Inter-disciplinary Interface Innovation Fellowship uses health data as the source of experiential stories and as the source material for creative expression. In a series of exploratory workshops, a community of artists, academics and members of disadvantaged population will use a combination of creative media, storytelling and data analytics to explore evidence around health in their local communities. They will co-produce creative work that takes various forms (such as 3D-printed data sculptures, sound art and data murals around the city), which is inspired by both anonymised personal and statistical health data.

The project will contribute to the development of new theorisation and practice in the emerging field of data studies, creative arts and health in three ways:

- It seeks to explore the new opportunities that are offered in data analysis and visualisation for developing participatory communication strategies for health and wellbeing in the era of big data and personalised digital health. Through innovative artwork that translates obscure statistical data into actionable health information, it will provide a unique new experience for audiences.

- Secondly, it aims to examine how art and creativity can enable health literacy and digital skills amongst socioeconomically disadvantaged population to reduce health inequalities. Based on the premise that people's encounters with personal data help self-discovery, sense-making and storytelling, the project will contribute to a new approach to understanding healthy ageing, which involves digital and cultural participation.

- Finally, it intends to assess how a participatory arts/data interface can benefit public health and how the combination of digital inclusion and cultural participation can help people stay healthy, active and productive as they age. By drawing on lessons from art for health initiatives, it will provide knowledge on improving public health communication strategies and on designing engaging art interventions in the care sector.

Planned Impact

The project aims to create an innovative interface between art, health and data science in order to advance participatory strategies for health communication, and to enhance the capacity of disadvantaged people to handle health information and to use digital technologies, in order to adopt healthier behaviours. Hence, the outcomes will advance the digital and health literacy of the public; will provide a new process for artists, designers and the creative industry who wish to transform data into artform; and will develop new participatory and data-driven approaches to health promotion within the care sector. The beneficiaries of these results will principally belong in the following main groups: 1) Disadvantaged communities and the general public; 2) Art sector and creative industries; and 3) Care and third sector.

1) Disadvantaged communities and the wider public
Working in partnership with the Public Health team of Brighton & Hove City Council and the Clinical Commissioning Group (CCG), the project will engage people who have been identified as socioeconomically disadvantaged, potentially of older age, poor health and also difficult to reach. For these groups, participation in the training and co-production workshops will increase their confidence with using creative material to narrate health-related experiences; their comfort in using digital health technologies; capacity to understand health information and statistical data; social and critical skills that prevent isolation. The project will enhance the public's knowledge of healthy ageing and prevention, as well as awareness of the relevance of health data and statistics, through exposure in the Brighton Fringe and Digital Festival.

2) Art sector and creative industries
The commissioned artists will benefit from new professional practice knowledge (using data as creative material, incl. management, analysis and storage of data) and increased exposure to their practice. Research outcomes will directly benefit the partners Brighton Fringe & Digital Festival by expanding their programme, offering new experiences to audiences, and gaining from the exploitation of new content. The wider creative sector will benefit from greater awareness of audience perceptions about experimental art and emerging technologies, which ultimately helps them offer artwork and services that enhance the lives of those who use them.

3) Care and third sector
The project will offer solid evidence on the benefits of participatory arts-based, data-based health communication and health promotion, of relevance to policy-oriented research. It will increase public awareness of the value of statistical and other health data for prevention, health and wellbeing, including self-tracking using digital health technologies, leading to better health outcomes. It will improve professional practices by enriching them with cultural participation and data-based art; and will increase awareness of the cultural and social aspects of health.

The project will build close collaborations with the beneficiaries of the research in order to achieve the short and longer term (2+ years) impacts. News and updates will be disseminated through the project web page (maintained for 10 years after project end), the collaborator's and partners' webpages and publications. The findings of the research will be presented in an open access printed and online publication for wide educational dissemination and use in GP surgeries, art galleries and educational institutions. The creative outputs (3D prints, mural and sound file) based on citizen-led data generation, data analysis and visualisation produced by artists and participants through this research will get exposure through relevant organisations' publications and events. The training resources that will be developed for the workshops will be made available after the project completion, in conferences, project website and in dissemination material to encourage take up.

Publications

10 25 50
 
Description The outcomes of the ART/DATA/HEALTH project are intended to advance the digital and health literacy of the public; to provide a new process for artists, designers and the creative industry who wish to transform data into artform; and to develop new participatory and data-driven approaches to health promotion within the care sector. At this early stage of the project, we continue to hold co-production meetings and training workshops (Data Analysis and Story finding; and Artwork Production) with community organisations, members of the wider public, and artists, as reported in the Engagement Activities section of ResearchFish (Participation in an activity, workshop or similar - DataHub Workshops with staff from community organisations). Through feedback forms and testimonies, we have already recorded changes in participants' confidence levels, with using creative material to narrate health- and wellbeing- related experiences. Other Impact activities that were held already include the ART/DATA/HEALTH Symposium in December 2019, and the Public event DATA, HEALTH AND THE ARTS: Creating space, bridging boundaries, at the Brighton Digital Festival event, in October 2019. These two events contributed to improved awareness about data science for the social good, and the role of health data for professionals and practitioners. and demystification of how health data can aid healthy aging. The engagement activities of the project are ongoing till May 2020, and the emerging impact will be reported in the next round.
First Year Of Impact 2019
Sector Communities and Social Services/Policy,Creative Economy,Digital/Communication/Information Technologies (including Software),Healthcare,Culture, Heritage, Museums and Collections
Impact Types Cultural,Societal

 
Description Royal Society Data Theme Community of Interest
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
Description Steering group Arts, Health and Wellbeing (Living Well) Brighton &Hove Council Public Health
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
URL https://cultureinourcity.com/upcoming-development-events/arts-health-wellbeing/
 
Description Collaboration with Brighton Digital Festival 
Organisation Brighton Digital Festival
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Brighton Digital Festival is a platform that supports and encourages people across the city to experience and explore digital technology and culture. The festival both celebrates Brighton's creativity, its innovative digital economy and top-level arts scene and provides space for meaningful critique about the role of digital technology in reshaping life and culture. As the fastest growing digital festival in the UK, with audiences averaging 50,000 per year for 150+ events and a far-reaching reputation, Brighton Digital Festival is a vehicle for social change. It brings together diverse sections of Brighton's population in new settings, as creators, as audiences and as participants, to help shape the future of the region. The ART/DATA/HEALTH project organised the public event, as part of the 2019 Brighton Digital Festival 'DATA, HEALTH AND THE ARTS', on Wednesday 23rd October, 6.30-8pm, at Phoenix Art Space (Green Room, ground floor), 10-14 Waterloo Place, Brighton, BN2 9NB. The event hosted four speakers who discussed and demonstrated the cutting-edge opportunities and challenges that digital data tools and technologies present for health and wellbeing. The key themes that were discussed were: What is the role of art and creativity in public engagement with health data? How is the digitization of health records changing public attitudes and medical practices? And how can virtual/augmented reality help us experience our bodies in a different way? Programme: 'Immersive art as therapy' Sarah Ticho (@SarahTicho), specialist in arts, health and immersive technology. Sarah has extensive experience working across the interdisciplinary arts, academia, healthcare and virtual reality as a producer, curator, artist and researcher. She is the founder of Hatsumi, producer at Deep VR, and Healthcare Lead at Immerse UK. 'My healthcare data: What does it look like and what can it be used for?' Dr. Liz Ford (@DrElizabethFord), Senior Lecturer in Primary Care Research, Brighton and Sussex Medical School. Liz's research focuses on mental health and dementia in primary care and community settings, with a particular focus on novel methods for using electronic health data such as patient records. 'You can't manage what you can't measure' Jo-Anne Welsh (@BOPjo_anne), CEO, Oasis Project. Jo-Anne qualified as a general nurse many years ago. Her career has included working in both acute and community settings and in the voluntary and statutory sector. Throughout her career she has been interested in health inequalities and has worked in both HIV services and for the last 12 years in Substance Misuse provision. Jo-Anne was awarded a Wellcome Fellowship for a project exploring attachment and how it relates to clients' experiences in 2016. 'Enhancing public engagement with health data through art practice' Dr. Aristea Fotopoulou (@aristeaf), Principal Lecturer (Associate Professor) in Media and Communications in the School of Media, University of Brighton. Aristea is a UKRI Innovation Fellow/AHRC Leadership Fellow whose research focuses on social transformations that relate to digital media and data-driven technologies (e.g. self-tracking, wearables, big data, AI). Moderator: Rifa Thorpe-Tracey (@rifa), an events organiser, coach, producer and advocate for inclusivity in tech. Rifa launched SheSays Brighton (@SheSaysBrighton), curates Spring Forward Festival, runs Refigure Ltd, co-hosts a weekly arts podcast and is also a yoga and meditation teacher.
Collaborator Contribution • Participating in the steering group for the project to advise on formats for integrating the project with Brighton Digital Festival either via our curated or open programme routes and ensuring the work stays relevant to the Brighton Digital Festival audiences. • Improving outreach into the region around Brighton and Hove, also nationally and internationally and promoting the project activities via our online platforms which reach approx. 50,000 people. The in-kind promotion of the activities and staff time for steering groups would be worth an estimated £5,700.
Impact Public event (2019 Brighton Digital Festival) 'DATA, HEALTH AND THE ARTS', on Wednesday 23rd October, 6.30-8pm, at Phoenix Art Space (Green Room, ground floor), 10-14 Waterloo Place, Brighton, BN2 9NB.
Start Year 2019
 
Description Collaboration with Wellsbourne CIC 
Organisation Wellsbourne CIC
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Wellsbourne Healthcare Community Interest Company (CIC) (https://wellsbournehealthcare.co.uk) has been set up by doctors and nurses working in Whitehawk and East Brighton, in partnership with Sussex Community NHS Foundation Trust to provide a local service that understands the health needs of people using our service and provides improved services. The new practice has been established to ensure there are additional NHS services focused on supporting people living in Whitehawk. The aim of the project is to develop a participatory interface that involves creativity and use of data for the social good, in order to tackle health inequalities and digital inclusion. The project creates an innovative interface between art, health and data science in order to enhance the capacity of disadvantaged communities (such as those living in Whitehawk and the wider area of East Brighton) to handle health information and to use digital technologies, in order to adopt healthier behaviours. The research team will help Wellsbourne Healthcare CIC to identify barriers to health and wellbeing for residents of East Brighton, through our research process. The research process involves adult residents in Whitehawk who will participate in a series of exploratory workshops (which are planned for March 2020). During the workshops they will introduced to digital health apps, and data visualization. They will use a combination of creative media, storytelling and data analytics to explore evidence around health and wellbeing in their local area. They will work with the emerging artist Ian Leaver (commissioned by the project) who is embedded in the Wellsbourne CIC, and has a track record of community arts work in the area. The participants will produce creative work in the form of a mural/installation which will be permanently exhibited at the Wellsbourne site and will help improve their services.
Collaborator Contribution - The partner has provided their space as a permanent site for the art work exhibition. - They have allowed the artist Ian Leaver (who works in the Wellsbourne admin team) to participate in planning and networking meetings with the ART/DATA/HEALTH research team. - Wellsbourne CIC have provided health professional expertise, anonymised data from the surgery and reports on the indexes of deprivation.
Impact This is in progress.
Start Year 2019
 
Description Partnership with Brighton & Hove Council Public Health 
Organisation Brighton & Hove City Council
Country United Kingdom 
Sector Public 
PI Contribution The PI Dr Aristea Fotopoulou has joined as a member of the Arts, Health and Wellbeing Steering Group of the Brighton & Hove City Council Public Health Department in November 2019 (https://new.brighton-hove.gov.uk/health-and-wellbeing). As a member of the Steering Group she provides expertise and intellectual support to a range of activities initiated by the Council and by members of the group.
Collaborator Contribution Public Health at Brighton and Hove City Council work with key partners across the city - the NHS, local businesses and the community and voluntary sector - to ensure that health and wellbeing are made a priority in every area of life, and that everyone has access to the support and services they need to be healthy. Following a previous collaboration with the University of Brighton in the Leading Places 1 project and the ongoing legacy work with citizens in Brighton and Hove, Public Health have extended their collaboration with the University through their partnership with the ART/DATA/HEALTH project, in order to include the area of art and health. The project is of particular interest to public health as the theme for Brighton and Hove's next Public Health Annual Report is Arts in Health. Public Health at Brighton and Hove City Council support the project in the following ways: a) Staff time to facilitate networking b) Access to data for use in the project c) Representation on the project steering group The estimated in kind value of these resources is £800.
Impact This is ongoing. Forthcoming representation of ART/DATA/HEALTH project in the "More Culture, Less Medicine" conference, which will take place on Tuesday 28th April at the Sallis Benney Theatre, University of Brighton.
Start Year 2019
 
Description Partnership with Brighton Fringe 
Organisation Brighton Fringe
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Brighton Fringe is an open-access arts festival held annually in Brighton, England, committed to helping the arts flourish. It is the largest annual arts festival in England and one of the largest Fringe festivals in the world. The ART/DATA/HEALTH project contributes expertise to the future development of the Fringe Freedom Season (https://www.brightonfringe.org/seasons/freedom-season/) which currently focuses on programming for and by people with disabilities, and an opportunity to open it up to include information about overall health and wellbeing. The ART/DATA/HEALTH project has currently contributed two events to the Fringe programme: - A sculptural installation by Anna Dumitriu (with RISE) - A VR poem installation by Kate Genevievve
Collaborator Contribution The Brighton Fringe team has contributed as follows: ? Co-commissioning new work which enhances the Fringe offering in the city and beyond, making innovative use of digital technology and arts practice to translate health data in new and engaging forms. ? Improving outreach into the region around Brighton and Hove, also nationally and internationally. ? Participating in the steering group for the project and workshops so the work stays relevant to our industry and audiences. ? Promoting the project outcomes/exhibitions via our online platforms that reach over 70k social media followers and over 25k email subscribers, plus through our print distribution with 100,000 brochures distributed throughout Brighton, Sussex and London. The in-kind online and print promotion of the outputs/exhibitions would be worth an estimated £500.
Impact The two artworks exhibited at the Fringe festival are listed in the Brighton Fringe programme: - Kate Genevieve, Dorset Place Gallery - Anna Dumitriu, Regency House
Start Year 2019
 
Description Partnership with NHS CCG 
Organisation NHS Brighton and Hove CCG
Country United Kingdom 
Sector Public 
PI Contribution The outcomes of this collaboration will support advancement of the digital and health literacy of the public and could feed into how the NHS Brighton and Hove CCG can plan and commission services that are easy to access and helpful to use, both for new services and to improve existing services. The project pledges to increase awareness of the cultural and social aspects of health and improve data practices between professionals aligning with the CCG's vision and priorities with regards to constant service improvement. The ART/DATA/HEALTH project offers to the collaboration with the Brighton and Hove CCG : 1) An opportunity for staff and clinicians to be engaged in a research project with the local university that aligns with the CCG's strategy and goals 2) Involvement in a study that seeks to enhance the capacity of disadvantaged people to handle health information and to use digital technologies, in order to adopt healthier behaviours, in line with the CCG and NHS's wider vision 3) Access to educational printed and online publications for dissemination across local GP surgeries and other NHS services (this is in progress). 4) Datasets and training resources resulting from the project workshops (this is in progress).
Collaborator Contribution NHS Brighton and Hove CCG aims to work with, and for, the people of Brighton and Hove to improve their health and wellbeing by commissioning services that are high quality, sustainable and value for money. The CCG commits to support the project through active involvement- including on the project steering group- and through the appropriate access to, and use of, data (totalling approximately £700). The CCG has contributed expertise to the project, and has facilitated the networking process, through introductions to potential further collaborations for recruitment in the research process of the project (Travellers Family and Friends group, Wellsbourne CIC).
Impact There is a range of planned outputs for the 2020-21 period of the project, including a) educational printed and online publication for dissemination across local GP surgeries and other NHS services b) training resources resulting from the project workshops (this is in progress).
Start Year 2019
 
Description Partnership with RISE UK 
Organisation RISE
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution RISE is a Sussex-based charity that supports people affected by domestic abuse and violence (https://www.riseuk.org.uk/about-us). The ART/DATA/HEALTH project contracted RISE to perform research services, in three ways: a) RISE allowed 10 members of its staff to attend and engage with the Art/Data/Health project during the data skills and data arts workshops between January and March 2020. b) It provided the funds to recruit a Community Researcher (embedded in RISE) for 12 hours. Their key responsibilities were recruitment and support of participants; aligning research needs with University; data capture and processing at beginning and end. c) It provided further funding for 16 hours of the Community Researcher's work to provide feedback on research, to attend the project steering group meeting and assist with applications for further funding. The project offered training to members of RISE staff as follows: In a series of exploratory workshops, RISE staff were introduced to data science and data visualization. They used a combination of creative media, storytelling and data analytics to explore evidence around health and wellbeing. They collaborate (this is ongoing) with the commissioned artist Anna Dumitriu to produce creative work using both anonymised data collected by RISE, and statistical/public health data about domestic abuse. The data skills training session (DataHubs) included: 1) Intro to data for advocacy The aim of this session is to introduce participants to the process of translating data into an impactful story. By the end of the session participants will understand the relationship between data, information and knowledge, and how data is used to advocate for change. 2) Working with data: sources and textual analysis In this session participants had an overview of different sources of data, and got their hands on different datasets. They explored how to gather the data they need in order to answer a question, and how combining datasets may be more helpful than a single dataset. 3) Finding stories in data In this session we explored the different ways in which data-driven stories can have a real impact in the world. By the end of the session participants had knowledge of how to come up with an idea, what to think about when planning a data-driven campaign and what to look for when evaluating tools for organising and visualising information. 4) Write a Data Storybook For this session we told data stories using creative narratives and physical craft materials. We practiced making data-driven arguments that ask audiences to change their behaviour or change their attitude to a particular topic. The Data Arts production workshops included: - Introduction to bioart, Anna Dumitriu's art practice and process; introductions to artists work related to themes around dealing trauma, abuse and violence, such as Tracey Emin, Marina Abramovic, Yoko Ono and Christian Boltanski. - Working with a range of 3D materials including paper clay, metal and textiles to make creative experiments. Making a series of 'votives' that tell key stories, elements about experiences about the participants work and issues around domestic abuse. - Introduction to performance for experiencing the space we are in mindfully and other guided practical art making exercises.
Collaborator Contribution RISE contributed with data collected by the organisation, which they made available for analysis by the project. Between 11-14 members of staff participate in the three workshops (still in process), as research participants. The ART/DATA/HEALTH research team collects audio, visual and ethnographic data about the process of skills acquisition, wellbeing and other data that will be part of the key findings of this project.
Impact The partnership will result in a sculptural installation by internationally renowned contemporary artist Anna Dumitriu, exploring how art can help create meaning from complex health data and uncover hidden narratives. A collaboration with RISE, a Sussex-based charity that supports people affected by domestic abuse and violence. The work wlll be exhibited in May 2020, at the The Regency Town House (13 Brunswick Square, BN3 1EH, Brighton). The Brighton Fringe listing can be found here: https://www.brightonfringe.org/whats-on/a-sculptural-installation-from-artdatahealth-and-anna-dumitriu-in-collaboration-with-rise-147554/
Start Year 2020
 
Description ART/DATA/HEALTH Symposium, University of Brighton 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The ART/DATA/HEALTH symposium was a closed, by invitation-only event held at the University of Brighton on the 16th December 2019. It was an opportunity for the project advisory board and other expert thinkers to get together and explore some key themes around art, data and health. The purpose of the event was to start these productive conversations, which will inform the project as it commences fieldwork and further public engagement activities; it was also intended to explore potential future research collaborations between different sectors. To this end, the day was split into five sections:

1) presentations about the ART/DATA/HEALTH project
2) talks about datafication, design and social justice
3) a roundtable about digital technologies and tackling health inequalities
4) a panel on the ethical issues and the implications of data in the mediation of science and health
5) talks about arts and health.

The ART/DATA/HEALTH Symposium gathered together forty (40) academics, practitioners, service providers and policy-makers from the UK and oversees, to discuss future challenges and opportunities around health data and arts practice.
Speakers included: Alistair Hill (Public Health, Brighton and Hove City Council). Natalie Banner (Understanding Patient Data, Wellcome Trust)
Artists: Anna Dimitriu (Commissioned artist, partnered with RISE). Catherine Baxendale (Artists, Invisible Flock Collective). Susie Freeman (Artist, Pharmacopeia).
Designers/ academics: Catherine D'Ignazio (MIT). Emmanuel Tsekleves (Lancaster University).
Academics: Bobbie Farsides (Brighton and Sussex Medical School). Sally Wyatt (Maastricht University). Flis Henwood (University of Brighton). Gabrielle Samuel (King's College London). Kate O'Riordan (University of Sussex). Elisabeth Ford (Brighton and Sussex Medical School). Lina Denzik (Cardiff University). Neil Singh (Brighton and Sussex Medical School).

OUTCOMES:
1) Certain cross-cutting themes emerged throughout the day, both within the talks and through audience discussion:

- The scope of data, and what gets missed: How do we account for, incorporate and validate lived experience? Which demographic profiles get left out; what counts as 'material'? How do we define what data, and whose data, 'counts'?

- The role and purpose of art: is it primarily therapeutic, challenging, an act of hope and resistance, an engagement medium, a way to enact policy, a provocation, or a mirror to society? Can it be all of these things at once?

- Trust, ethics, and quality of healthcare interaction: there was an emphasis on the widespread anxiety around the nature of health delivery being altered by digital/data tools, and around the use of personal data.

- Routes to engagement:the group agreed on the need to allow audiences to define their own sense of what is valuable to them, to leave the content and form of questions open, to pay attention to 'design from the margins' and what already works for communities, to make sure it's real engagement and not top-down education/compelling them to think a certain way, and to make sure participatory methods are really necessary. A guiding questions was: whose agenda does it serve?

- Socio-political contexts and structures: the group pointed out the potential to overlook the root causes of structural inequalities behind data approaches. How can research, public engagement and participatory work act to reduce rather than exacerbate health inequalities?

2) The Symposium led to changes in the audience's attitudes towards data arts and data-based design for social change, because it introduced the work of artists and designers with whom the group was unfamiliar. We collected 10 'Postcards from the future' - Instructions given to the audience: 'We are in 2030. You are sending us a postcard from the future. What you tell us to think about in relation to health data?'. With the recordings of the discussions, these postcards constitute qualitative data for the project, which will be written up in a peer-reviewed article.

3) The Symposium led to plans for the ART/DATA/HEALTH Conference in November 2020, with confirmed keynote speaker Prof Catherine D'Ignazio (MIT).
Year(s) Of Engagement Activity 2019
URL https://www.artdatahealth.org/2019/12/11/art-data-health-symposium-16-december-2019/
 
Description ART/DATA/HEALTH blog and Twitter feed 
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 The ART/DATA/HEALTH website and blog posts provide updates about the progress of the project and its engagement activities. It is also the home of resources (to be populated)
which will be made available to third sector organisations and the general public, aimed to help with training and skills acquisition in using data visualisation and basic data analysis tools for storytelling. Twitter feeds from the project account (@ARTDATAHEALTH1) about the Brighton Digital Festival event had 1421 impressions and 52 direct engagements. The most popular two tweets from the ART/DATA/HEALTH Symposium had 887 and 820 Impressions and 19/17 direct e ngagements respectively, while others had between 100 and 500 impressions, and 10 engagements on average. These tweets reported on bioart and art/health relationships, and also gave updates about the engagement exercise during the symposium (Postcards from the Future).
Year(s) Of Engagement Activity 2019,2020
URL http://www.artdatahealth.org
 
Description Critical Big Data Literacy (CBDL) - an international working group on theoretical frameworks and promotion strategies of new literacies for citizens in datafied societies 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Study participants or study members
Results and Impact A three day workshop, 19-21 February 2020 at the CENTER FOR ADVANCED INTERNET STUDIES (CAIS), Universitätsstr. 104. 44799 Bochum, Germany

The main goal of the workshop was to allow an international network of academics who are already working on different concepts of data literacy for citizens (and producing resources to promote such literacy) to come together and discuss their work, visions and goals. The workshop was divided into a Theory Day, Practice Day, Strategy Day.
Participants included:
Valentin Dander - Fachhochschule Clara Hoffbauer (University of Applied Science), Potsdam, Germany.
Aristea Fotopoulou (University of Brighton, UK).
Harald Gapski (Grimme Institute, Marl, Germany).
Helen Kennedy (University of Sheffield, UK).
Stephan Packard (University of Cologne, Germany).
Lulu Pinney (University of Sheffield, UK).
Joanna Redden (Cardiff University, UK).
Ina Sander (Cardiff University, UK).
Dan Verständig (Otto-von-Guericke-Universität Magdeburg, Germany).
"Me and My Big Data" project, (University of Liverpool, UK).

The working group is planning a collaborative funding application and a shared repository of data skills/data literacy tools.
Year(s) Of Engagement Activity 2020
URL https://www.cais.nrw/en/homepage/
 
Description DataHub Workshops with staff from RISE 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact This is ongoing activity, with two more dates of engagement planned in March.

11-13 members of staff from RISE have been recruited to participate in a series of workshops facilitated by the research team and the commissioned artist Anna Dumitriu. The impact is yet unknown. The artwork (sculptural installation) will be exhibited at the Brighton Fringe.

The Datahub workshops so far have led to requests for more information and the research team are in the process of finalising resources for training that can be disseminated to participants and others in the third sector interested in enhancing their data skills and creativity skills. Furthermore, the collaboration with RISE created the space for further (future) fruitful study that is closely linked to the needs of RISE.
Year(s) Of Engagement Activity 2020
 
Description DataHub Workshops with staff from various community organisations 
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 The ART/DATA/HEALTH project recruited participants from 7 community/ third sector organisations for a series of four-day workshops, with the call:

Would you like to know more about how to translate data into impactful stories?
Are you interested in creating a data-driven campaign for your organisation?
Do you want to work alongside community artists and take part in the Brighton Fringe Festival?

The project received 17 expressions of interest, but only 7 participants could commit to attending 4 days of workshops.The project offered an opportunity for people working in charity or not-for-profit organisations in the area of Brighton & Hove to take part in a series of staff development workshops. During the workshops participants worked alongside the University research team and the commissioned artist Kate Genevieve. They used a combination of creative media, storytelling and data analytics to explore evidence around health and wellbeing, with a particular focus on the themes of loneliness, and substance abuse. Participants brought along data in Excel or CSV formats - for example, referral numbers or monitoring data. The purpose of the workshops were to gain data skills, and to help create an artwork which will be exhibited the 2020 Brighton Fringe Festival.

The community groups were:
- Emerging Futures CIC
- Sage Holistic
- Together co (befriending and social prescribing)
- Kennedy street CIC (Addiction recovery)
- ONCA
- Friends, Families and Travellers
- Brighton & Hove NHS CCG/Inclusive arts

At the two days of Datahub participants were introduced to using data for advocacy. The aim of this session was to introduce participants to the process of translating data into an impactful story. By the end of the session participants were able to understand the relationship between data, information and knowledge, and how data is used to advocate for change. Consequently, participants were explored different sources of data, and examined different datasets. They were introduced to the issues of thinking about how to gather the data we need to answer a question, and how combining datasets may be more helpful than a single dataset. They were shown how to use Excel to look at some relevant datasets and how to use Pivot Tables. In a following session, participants explored the different ways in which data-driven stories can have a real impact in the world, and learnt to plan a data-driven campaign. They learned about what to look for when evaluating tools for organising and visualising information, and gained critical understanding in dataviz. At the end of the two-day Datahubs, participants created Data Storybooks, to tell data stories using creative narratives and physical craft materials.

The further 2-day Data Arts workshops were led by Kate Genevieve and participants explored how they could use data and evidence about loneliness and isolation to tell an informed story, and how VR and animation could represent feelings of loneliness. The artist and participants explored how medical research approached feelings through body maps. Their input and storyboards will inform the art production process, with final output to be exhibited at the Brighton Fringe festival.
Year(s) Of Engagement Activity 2019
URL https://www.artdatahealth.org/2020/02/06/art-data-health-workshops-call-for-participants/
 
Description Public event 'DATA, HEALTH AND THE ARTS' (2019 Brighton Digital Festival) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Public event 'DATA, HEALTH AND THE ARTS' (2019 Brighton Digital Festival) on Wednesday 23rd October, 6.30-8pm, at Phoenix Art Space (Green Room, ground floor), 10-14 Waterloo Place, Brighton, BN2 9NB.

On 23rd October 2019, as part of the Brighton Digital Festival, the ART/DATA/HEALTH project welcomed 40 guests (physically) present to the first public event "Data, health and the arts: Creating space, bridging boundaries to debate the opportunities and challenges presented by digital data tools and technologies for health and wellbeing". The event was streamed on Twitter, with approx. 60 internationally viewers.

The event's intended audience was the general public, especially people interested in digital health, health data, arts and health, immersive technologies, and data for the social good.

Four speakers debated the opportunities and challenges presented by digital data tools and technologies for health and wellbeing. The audience got involved by voting in person and on Twitter for the issues around health data which are most important to them. Coming top as opportunities were knowledge and understanding, better individual care, improved diagnosis and citizen engagement, while people saw bias and ethics, and data security, as key challenges.

The first presentation was a talk on 'Immersive art as therapy' from Sarah Ticho, specialist in arts, health and immersive technology. Sarah discussed her work using Virtual Reality to explore body mapping techniques - a way in to exploring experiences of pain, emotion and allied conditions such as synaesthesia.

As Sarah puts it: "Pain and emotions are still rarely understood, and often impossible to see or measure. Using drawing, painting and collage to make these invisible experiences visible enables the indescribable to be shared with others and thereby increases the understanding of another's subjective experience. Importantly it also provides the creator with a new perspective on their own experience. Hatsumi is a VR adaptation of the body mapping process - an arts-based research tool, which, due to its focus on embodied experience, lends itself to the exploration of bodily and psychological feelings and experience.

The second speaker, Dr Liz Ford from the Brighton and Sussex Medical School gave an overview of health data, contrasting formal health data coding with more narrative approaches. Dr Ford pointed out how important it is to consider the differing purposes of collecting patient data - who benefits, and how?

The third speaker, Jo-Anne Welsh from the Oasis project (www.oasisproject.org.uk), a substance misuse service for women and their children, expanded on this question by considering the experiences of Oasis service users. Stressing the socioeconomic context to experiences of support services, she emphasised how carefully data collection must be carried out in order to avoid a situation in which we 'hit the target and miss the point'. Jo-Anne finished by showing a film from the 2018 Oasis project 'The Art of Attachment', which showcases the individual stories of women experiencing substance use, family attachment, and trauma.

The fourth speaker, ART/DATA/HEALTH project lead Dr Aristea Fotopoulou gave an overview of data science to address social issues, and the ways in which data arts can help tell stories about health and wellbeing.

Outcomes: During the event discussions, several themes arose, such as stigma and bias in data design and collection; the potential of social media for exploring and informing people about health issues; concerns around privacy and data security; the accessibility issues inherent to digital data technologies; and the potential for existing health inequalities to be exacerbated by data-focused work. A clear need was voiced for individual, qualitative, narrative stories to be part of the wider conversation about health data. The audience showed increased interest in exploring how health data can be used for the social good, and the related critical themes.
Year(s) Of Engagement Activity 2019
URL https://www.artdatahealth.org/2019/12/11/videos/