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

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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 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 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 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/