Digital Health Generation? Young people's use of 'healthy ...

Digital Health Generation? Young people’s use of ‘healthy lifestyle’ technologies

Project ReportProfessor Emma Rich | Dr Sarah Lewis | Professor Andy Miah | Professor Deborah Lupton | Dr Lukasz Piwek

Contents

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DIGITAL HEALTH GENERATION | WWW.DIGITALHEALTHGENERATION.NET

Contents 1

Suggested citation 3

Acknowledgements 4

Multidisciplinary advisory board 4

Executive Summary 5

Key recommendations and guidelines 10

1. Introduction 11

Methods 14

Phase 1: Survey of young people’s digital health engagement 15

Phase 2: In-depth interviews and focus groups 15

Phase 3: Researching young people’s digital health experiences in ‘real time’ 16

Ethics 16

2. Findings 17

What digital tools are young people using? 18

What digital technologies do young people use for health? 20

How are young people using digital health technologies? 22 One size does not fit all

Digital health knowledge: What are young people learning about health? 22

How are young people discovering information and content about health? 24

What are young people doing online? Digital health practices 25

The influence of social media 26

Disaffection and obsessive practices 33

Monitoring, tracking and quantification: ‘it’s almost a race to get to 34 eight thousand or ten thousand steps’

The labour and burden of digital health practices 38

The influence of others on young people’s digital health practices 41

Making sense of digital data and multiple messages 42

Digital literacy and the importance of support of others 44

The importance of face to face contact 47

Young people as creative producers of digital health practices 47

Data sharing and owning: Security and safety 48

Credibility and validity 50

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The promise and future of digital health 51

Young people as co-designers of digital health 52

3. Impact, engagement and resources 55

On Digital 56

Events 57

Final Event 59

2019, March - Digital Health Generation National Conference, Bath 59

Presentations 64

4. Conclusions 65

Lost in a sea of health information 65

The need for guidance 65

References 67

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Rich, E., Lewis, S., Lupton, D., Miah, A., Piwek, L. (2020) Digital Health Generation?: Young People’s Use of ‘Healthy Lifestyle’ Technologies. University of Bath, Bath, UK.

Suggested citation

Our sincere thanks to all of the following for their contributions to and support of the research:

The Wellcome Trust for funding the research study ‘The Digital Health Generation: the impact of “healthy lifestyle” technologies on young people’s learning, identities and health practices’ (203254/Z/16/Z).

The schools, teachers, young people and families who willingly and enthusiastically participated in this research project.

The various stakeholders who participated in the engagement activities and provided commentary, feedback and insight on our research and proposed recommendations.

The project expert advisory board, who have been instrumental in advising on the design and development of this project.

The local authority team for supporting this project throughout its duration.

Francis Sealey and Globalnet21 for hosting our webinars and our national policy event at the House of Commons.

Artist Laura Sorvala, who created the artwork for the report and created an illustration of our national conference and key findings.

The NHS Digital team: Hazel Jones, Director, Apps and Wearables programme, and Janet Morgan, engagement and uptake research, Apps and Wearables programme.

The University of Bath, the University of Salford, the University of Canberra and the University of New South Wales, Sydney

Roots research company.

Professor Emma Rich, University of Bath

Dr Sarah Lewis

Professor Deborah Lupton, UNSW Sydney

Professor Andy Miah, University of Salford

Dr Lukasz Piwek, University of Bath

For enquiries please contact: Professor Emma Rich Department for Health University of Bath Bath BA2 7AY [email protected]

Acknowledgements

Expert advisory board: We are grateful for the support from our multidisciplinary expert advisory board for their input into the design and development of this research study:

Dr Huw Davies, Oxford Internet Institute, University of Oxford Dr Victoria Goodyear, Birmingham University Associate Professor Mariann Hardey, Durham University Professor Christine Hine, University of Surrey Professor Shaun Lawson, Northumbria University Professor Sonia Livingstone, London School of Economics and Political Sciences Professor Jessica Ringrose, Institute of Education, University College London Dr Ben Williamson, Centre for Research in Digital Education, University of Edinburgh

NB – all art work in this report has been created by Laura Sorvala:

www.laurasorvala.com

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Executive summary

This report details the findings of the Wellcome Trust project entitled ‘The Digital Health Generation: the impact of “healthy lifestyle” technologies on young people’s learning, identities and health practices’ (203254/Z/16/Z). The project generated new insights on young people’s use of digital health technologies and involved research with over 1,000 young people and families.

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Digital health technologies are having a powerful impact on encouraging young people to approach health as a personal practice. Young people in the UK and elsewhere are growing up in a time when health care is increasingly turning towards digital tools to meet growing demand. In recent years, we have seen a significant growth in a range of digital technologies used for health purposes. These include websites, blogs, social media platforms, mobile phone applications (‘apps’) and wearable technologies (e.g. fitness bands with sensors). Many of these devices and software are focused on promoting ‘healthy lifestyles’. They can be used to find information about health, or as a tool to collect, track and share data about our health (e.g. how far we run, how much we eat). Despite the rapid growth of these technologies, there are no guidelines for those with responsibility for young people (practitioners, coaches, teachers, researchers or families) to help support young people’s engagement with health-related digital devices and media.

The research is a world-first, addressing major and pressing gaps in health knowledge by providing unique insights into young English people’s experiences of digital health technologies promoting ‘healthy lifestyles’.

Throughout the two-year study, a mixture of quantitative and qualitative methods was used to undertake research with over 1,000 young people and their parents in South-West England between 2017 and 2019. The study involved three separate components: 1) a survey completed by 1,019 respondents; 2) 30 in-depth interviews and one

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focus group discussion with a further eight young people; and 3) a study which involved seven young people wearing a tracking device and sharing their experiences with us in real time plus interviews with their parents. The project team also undertook a series of engagement activities to bring together different voices to exchange ideas and inform policy development and professional practice. Through a series of events and digital platforms, young people, families, academics, non-profit groups, industry and designers, health professionals, policy makers, teachers and others with responsibility for young people’s care participated in these discussions with us.

The experiences of young people documented in this report point to the complexities of digital health and the need to avoid technological determinism: technology is neither inherently oppressive nor empowering. We found that many of the young people who participated in our research and forums have experiences of digital health which are both positive and problematic.

Taken together, our data collection and engagement activities provide detailed insights into the digital health experiences of our young participants. These activities have informed the development of a series of recommendations and guidelines to support a range of stakeholders interested in digital health in the UK, including but not limited to: parents, coaches, teachers, health professionals, policy-makers, digital health industry and researchers. While our findings are drawn on young people living in South West England, they have relevance for other countries in the Global North.

The young participants in our study are active users of digital health technology. Internet-based activity and app use took place through personalised devices (tablets and smartphones) and the internet use was a regular feature of their everyday lives. Many of the digital practices associated with these technologies reflect a shift towards young people becoming ‘health consumers’ and expectations of self-management of their health.

This group of English young people access a vast range of health-related content online, through multiple devices, from a young age. Moreover, they use these technologies to actively learn about health and track and monitor a range of health

behaviours. The participants used a range of different technologies and move regularly between these: often these systems are linked or integrated. Rather than remaining loyal to particular tools, the young participants frequently selected technologies which were relevant to them to meet particular needs as these arise. They were frequent users of search engines and health information websites. They also used YouTube, online discussion groups, social media, apps or wearable devices.

Young people are particularly reliant on technology for learning about a ‘healthy body’. Among the benefits of such experiences for our participants was the gaining of better knowledge of their bodies, illness and healthcare and feeling more in control of health and wellbeing states. While the participants valued the convenience, accessibility, detail and diversity of information offered by digital media and devices, their experiences also highlighted concerns about navigating the volume of information. Of particular significance was the importance of face-to-face as well as online relationships and personal connections with other people for providing information and support, including family members and friends as well as medical professionals.

Commercial health technologies and social media play a particularly powerful role in how young people learn about the ‘healthy body’. In addition to having to make sense of existing ‘official’ knowledge, young people are also actively shaping health knowledge through the different media and material they produce themselves.

While young people often draw on the health advice (e.g. training plans, dietary advice) provided through digital health (e.g. training plans, dietary advice), many were concerned that they would not be able to recognise if they were over-exercising or dieting too much. As such, they expressed the need for health and fitness apps to have warning alerts or ‘limits’ built into them, involving messages advising them on when they might be exercising or dieting excessively. Digital health tools can lead some young people to engage with forms of self-monitoring which have been linked with disordered eating or excessive exercising regimens. In extreme cases, parents or others have intervened to stop young people from using fitness and dieting apps because of their perceived harmful effects.

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Young people are using an expanding range of digital devices for health (social media, apps, websites, videos, images, wearable devices) and the data on and about their bodies and health practices continue to accumulate, sometimes without their knowledge. As a result, their bodies and health states are becoming increasingly datafied and quantified. This has a significant impact on how they come to understand themselves and their health.

The participants highly valued the capacity of digital technologies to generate detailed information about their bodies and health states and imagined new technologies that would be able to achieve even more detailed personalisation and customisation. However, they expressed little knowledge or concern about how their personal health data may be exploited by others.

Digital technologies provide opportunities and risks and they do not operate in isolation. Digital health practices provide a way of understanding the different ways in which young people use digital health in the context of their complex lives. Young people are not necessarily ‘digital natives’. Our participants demonstrated varied forms of literacy, understanding and opportunities and a better understanding of inequalities is needed by those involved in the design and delivery of digital health care. The role of others is therefore crucial in data interpretation and responses. For our participants, not having access to someone who could help them interpret and make sense of health information and their personal data emerged as a key inequality and point of difference in their learning. Some participants said they did not have access to an adult who can help guide them and felt this inhibited their positive engagement with digital health technologies. Parents use different strategies to monitor what their children might do online. Some put in place rules and restrictions and others prefer to talk to their children and guide them.

Key findings:1. 70% of the survey respondents overall reported

using digital technologies for health purposes, while 55% of respondents identified their smartphones as the main technology they used to learn about health. Participants reported that they mostly have to share larger devices (laptop or desktop PC) for finding health information.

2. A total of 42% of the respondents used digital health technology specifically to learn about how to improve their health.

3. The participants had accessed digital health technologies from a very young age: 75% of survey respondents said that they owned their first mobile/tablet between the ages of 8-11 years.

4. Young people reported a high degree of autonomy in how they used technology: 62% of survey respondents said adults did not check their internet use, 72% said that they can use any technology to which they have access and 68% reported that they can do ‘what they want’ when it comes to searching online for health information.

5. This freedom poses some risks, given that one in ten young people had identified something they considered to be ‘inappropriate’ online in the week leading up to our survey. They were also concerned about advertising online and were unsure how to navigate or avoid this.

6. YouTube was the most popular source of health information, with 44% of survey respondents reporting use. Fitness is the most popular category of health-related videos watched by participants.

7. A total of 45% of participants worried about finding the correct information online.

8. Official information sites (e.g. NHS, WebMD, BUPA etc) were rated as most helpful in terms of recognised and safe knowledge about health. Young people value the ratification of digital tools by recognised authorities (e.g. NHS) to guide their selection of safe and appropriate tools.

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9. Short term use of particular technologies and apps was common: young people are focused on ‘here and now’ data and on technologies which address immediate health needs and concerns.

10. Social media platforms are important sites for young people’s learning about health. Patient experiences, training videos, blogs, vlogs, fitness and health pictures and other material are now commonplace on social media platforms.

11. Many young people are deeply affected by the images of ‘perfect bodies’ associated with health and fitness circulating in social media.

12. Given rising social anxieties about being locked into digital communication systems (Hardey and Atkinson, 2018) and the difficulty of opting out, it may be difficult for young people to resist some of the social media body pressures reported above, which can have significant impacts on their quality of life

13. Tracking and monitoring their bodies and health behaviours is common practice, with just over half (52%) of the survey respondents reporting using digital health tools to measure, track, monitor and regulate their bodies and aspects of their daily lives and behaviours: including sleep, calorie intake, exercise/physical activity, mood, heart rate and sleep patterns and menstruation.

14. Accessibility, diversity of platforms and speed at which the participants can access information were perceived benefits of self-tracking and self-reporting activities.

15. Some participants value the detailed information generated about their bodies while others remain concerned and sometimes disaffected by what they learn about their bodies or health through digital platforms. Self-tracking apps and devices might lead to an increased interest in personal health practices, but young people and families have difficulty in making sense of classifications of personal health and what their data might mean.

16. One of the major challenges for young people using digital health is navigating the extensive information and multiple knowledge forms circulating in digital health environments.

17. Many young people experience tensions and differences between what ‘data’ tell them (quantified knowledge) and what they experience in and through their own bodies (embodied knowledge).

18. Young people routinely and regularly seek information through using digital health technologies, but also seek advice from adults they trust to help make sense of data and information.

19. Young people are cautious about sharing their personal health information. Our survey respondents said they were willing to share their health data with parents (64%), but to a much lesser extent with health professionals (35%) or their friends (33%).

20. There is a lack of comprehension around how personal health data are shared and stored. Young people demonstrated minimal knowledge about data security or privacy. Most young people were not familiar with third party data use or data security issues, or the limitations of current health data protections.

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Key recommendations and guidelines

1. Developing digital literacy and adult support (e.g. parents) is crucial to promote positive and safe digital health experiences, the absence of which might further compound health inequalities.

2. Digital literacy also needs to be developed amongst those who have responsibility for young people. It is important to support adults in developing their own digital literacy to better support young people in critically evaluating the diverse range of digital platforms, devices, apps and information available to them – further guidelines, ideas for curricula and video resources will be available through our project website.

3. Future proofing policy requires that we undertake regular upstream engagement with young people and continual involvement. It is important that we include young people in policy development and digital health design. Efforts should be made to involve young people in the co-design and co-creation of digital tools which address their health and data privacy and security needs.

4. Much more attention should be given to the wider social determinants and influences of health in relation to digital engagement. Not all young people have equal access to digital technologies or to trusted adults to support their use of digital health. A key finding was the difference across social class in terms of digital health literacy and the opportunity to have access to a trusted adult to discuss digital health challenges. Participants from a middle-class background described having greater resources, better literacy and a number of trusted adults with whom they could discuss health information, their health data, choice of digital health technology and the risks involved. Furthermore, reflecting health trends more broadly, boys tended to use digital health technologies to develop muscularity whilst girls described concerns over body weight and dieting and sometimes obsessive practices of using technologies for dieting/weight loss.

5. As a priority, schools should be supported in educating young people about digital health as part of the health curriculum. This should involve considerations such as: alternative models for understanding health; staff training and development in digital literacy; an understanding

of the social, cultural and structural influences on young people’s opportunities to take up particular health behaviours; co-design of health curricula with young people; and creative teaching and learning strategies that actively engage young people and excite their interest in the topic: e.g. arts- or design-based methods that involve creative thinking and making.

6. Digital health education should promote learning that will benefit young people in ways that help them feel better prepared to manage their online health identities, particularly in social media contexts. There are already numerous examples of body image and body confidence programmes in schools which are underpinned by efforts to enhance young people’s media literacy. Our research indicates that young people are very aware that many media (including social media) images are fake, modified or edited. However, this view is in tension with their embodied learning through which young people still aspire to look like the unrealistic bodies they see in these images found online.

7. There are opportunities to mobilise the positive influence of significant others such as parents/family members, teachers, health care professionals and other trusted adults to help young people navigate digital health media and interpret information and data.

8. Children and young people should be taught about data collection, security, ownership and third parties and how to navigate multiple and sometimes competing health knowledges.

9. There is an urgent need to further examine the role of app, other software and device developers and the digital industries in terms of the appropriateness and regulation of content being produced and shared around health. These issues should also be included in school curricula, so that young people are trained to examine them critically and creatively.

10. There is potential to explore how young people’s opportunities to take up practices that can improve and promote their health status.

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1. Introduction

Over the past decade, there has been a rapid growth in digital health technologies (Lupton, 2017a). A global wearable and mobile health industry provide the means by which people’s bodies and health practices are being measured and monitored, shaping the way in which health knowledge is being created, assessed and used around the world. These technologies include mobile phone apps and other software, digital devices, mobile devices, wearable technologies (for example, fitness bands and sensors), social media platforms and websites. Many of these technologies are being used by individuals and organisations to acquire information about their own or others’ health, bodies and behaviours and seek support for a range of health issues.

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Of particular prominence are technologies which are pertinent to promoting ‘healthy lifestyles’, both within the commercial health and fitness industries, but also within public health care and medical contexts. These technologies are designed to promote healthy lifestyle behaviours, such as physical activity, body weight management, optimal sleep and food consumption and other bodily aspects such as menstruation, fertility, sexual activity and pregnancy. Individuals can use digital technologies to measure, monitor and regulate their own or other people’s health, which therefore provide new ways of understanding our bodies and health through quantified data. Digital health technologies are increasingly integrated into healthcare settings (Lupton, 2013, 2017a). Governments and health organizations recognize the opportunities afforded by these technologies and the additional responsibilities that they generate, as a means of delivering more effective health care systems, relieving overburdened health care systems and as a way of fostering a ‘digitally engaged patient’ willing and able to take responsibility for self-care (Lupton, 2013).

Such technologies are populated by data on our bodies and behaviours and have prompted new questions about how we understand the social, cultural, ethical and political production of health knowledge and promotion – questions which draw attention to the utility of particular social theories to understand ‘health education’ and learning. There is therefore an urgent need for critical understandings

of how young people globally perceive, negotiate and manage these digital environments and how these practices contribute to (or possibly detract from) their own health status.

Many of these technologies are now being promoted by schools, parents, coaches, health professionals and others, as tools to encourage young people to adopt healthy lifestyles (Lupton, 2015, 2020a). Yet, for these opportunities to be realised, existing research and policy development must be informed by studies which better understand the contexts within which digital health is used and address some of the political and ethical questions about the increased monitoring and surveillance of people’s bodies and health behaviours. There is a pressing need to understand how young people are using these technologies and the impact this has on their health, identities and health behaviours. We cannot take for granted that these technologies are always beneficial, or that they have no negative impacts.

There have been significant developments in the design of digital health technologies, including the trend towards more mobile and wearable health technologies, many of which provide opportunities for improving health. However, despite continued investment, we don’t yet know if digital media and devices are the preferred means through which young people access health information. Nor do we know how young people might be contributing to or accessing digital media that potentially contribute

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to their participation in activities which are related to physical or mental ill-health or injury, such as disordered eating, body disaffection, self-harm and drug use. Failure to address these issues may lead to significant gaps in access to digital healthcare and to potentially harmful forms of engagement. After all, while digital health services may appeal from the perspective of service efficiency, there may be situations where all a person wants is someone to sit down with and talk to face-to-face, and so the digital interface may not adequately support this healthcare need.

In the UK, where this research is based, there has been a shift towards empowering patients and positioning them as ‘informed’ and ‘consumers’. While this has brought opportunity to promote positive health, we must be cautious of shifting blame onto individuals and we need a better understanding of the inequalities surrounding digital health.

We still know little about how young people actually learn through their engagement with these technologies. Important questions are being raised about how health knowledge circulating through these digital ecosystems function as pedagogy – a process through which young people learn to become particular kinds of ‘healthy’ subjects.

Addressing these gaps, this report presents findings from a two-year research project providing evidence on how young people living in South-West England are using digital health technologies; what they are learning, how they make sense of health information and data, and the impact of this on their identities and health behaviours. Our approach in this research was to analyse the pedagogical influence (Rich and Miah, 2014) of these digital technologies, identifying what English young people are learning about ‘healthy’ behaviours and how they are learning to recognize themselves and/or others as ‘healthy’. Guided by a focus on digital health practices, we examined how digital health technologies, knowledge and social context, interact to shape what and how young people know about their own and other people’s health, bodies and ‘lifestyles’.

Using an innovative methodological approach, across three research phases we collected data from over 1,000 young people and 7 parents and hosted a series of engagement activities with a range of stakeholders. The project aimed to:

1. identify how commercial digital health technologies focused on ‘healthy lifestyles’ are used by young English people (aged 11-18 years) in the South-West region and explore their impact on health practices;

2. develop contextualized understandings of how young people discover, select, adopt, share, employ, resist or reject the information and assumptions about health and bodies that are offered by digital technologies;

3. examine how actors and agencies (official and commercial) guide and push young people towards the use of digital health technologies;

4. develop new conceptual, theoretical and empirical insights on the processes of learning about and managing human bodies and health through digital technologies; and

5. explore how social contexts shape digital health technology engagement and identify related inequalities and disparities of its use (e.g. terms of differential access and social inequalities based on such attributes as age, gender, social class, sexuality, disability and ethnicity).

As part of this research, our mission was to share resources, research-led insights and views about what works well, how things may change, and what we need to do to help young people be ready for health care systems which are becoming increasingly digitised. To this end, more information and resources can be found at our project website, including videos, articles, a blog and further details about the research.

www.digitalhealthgeneration.net

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Methods

The research study has produced one of the largest datasets on young people and digital health, made up of a total of 1,064 young participants across the South West of England. A mixture of quantitative and qualitative methods was used to undertake research with young people between 11 and 18 years old as well as some of their parents. Participants were recruited from schools across the region of South West England via a research recruitment company. The schools represented a mixture of student profiles which varied by digital engagement/literacy, gender, social class, ethnicity and age. Three key phases of data collection were undertaken:

Phase 1: Survey of young people’s digital health engagement

Phase 2: In-depth interviews and focus group

Phase 3: Researching young people’s digital health experiences in ‘real time’

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Phase 2: In-depth interviews and focus group

Phase 2 employed qualitative methods to gain an in-depth understanding of how young people used digital health technologies. A total of 38 young people took part in this phase of research, recruited from two of the schools in phase 1 as well as via a research recruitment company. 30 people took part in a semi-structured interview and eight young people participated in a focus group. The eight young people in the focus group identified as middle class, included 6 boys and 2 girls and they were aged 13-17 years old, and variously identified as white British, Chinese British, Black Caribbean, White European and White South African. The data reveals what young people are learning about health; how technologies are taken up or resisted and how this informs their health practices; issues of trust/reliability; and some of the significant opportunities and inequalities, disparities and risks associated with the use of digital technologies for health. Furthermore, through this data set, we have been able to document the processes of learning through which young people discover, select, adopt, share, employ resist or reject the information and assumptions about health and bodies that are offered through different digital technologies.

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Phase 1: Survey of young people’s digital health engagement

In Phase 1, we conducted a large-scale survey of 1,019 young people aged between 11-18 who were recruited via four schools in the South West of England. Through this survey, we have generated baseline data mapping the respondents’ digital health experiences and key milestones (e.g. average age of first smartphone ownership). The survey was conducted through the SurveyMonkey online platform, and statistical analysis was conducted in R statistical programming language.

Figure 1: Survey participants by gender. Figure 2: Survey participants by school year and age

What is your school year?

Gender

Female47%

Other 3%

Male50%

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Phase 3: Researching young people’s digital health experiences in ‘real time’ This final phase involved an experimental approach to explore the wider social contexts and relationships surrounding how young people were learning about health in digital environments. We recruited seven families via a local research recruitment agency to participate in an eight-week long study. During this phase, seven young people were given a Fitbit Charge 2 self-tracking device for a period of 8 weeks. They were invited to use it as much or as little as they wanted. They were also invited to share their experiences with the research team via the mobile communications platform WhatsApp.

Using WhatsApp as a research mechanism provided a novel means by which it was possible to map young people’s engagement with digital health technologies. This was valued especially for its capacity to provide real time and contextual insights from within the participant’s native environment (their personal mobile device), which are often difficult to achieve by other modes of data capture. Participants were able to make notes/diary entries, take photographs, or create videos, which established a micro-sociological mapping of the materiality of their digital lives. Through WhatsApp chats and meetings with the research team, the participants were also invited to complete tasks around digital health technologies. By using WhatsApp, participants were able to document their experiences in real-time, which provided the research team with additional context for understanding the digital health experiences and

has enabled us to better understand how ‘offline’ contexts shape what young people do ‘online’.

The group was made up of 5 boys and 2 girls from a range of backgrounds and ethnicities. 6 participants were still in full time education, and 5 also worked part-time. All of the teenage participants lived in the family home and had siblings (although some siblings had grown up and no longer lived in the family home). 2 of the 7 participants lived in single parent families and in both cases lived with their mothers. As well as talking to the teenage participants, this phase of the research involved us interviewing their parents/guardians. Of the 7 parents/guardians we spoke to, all were in full time employment, working in a variety of sectors from healthcare to retail, and ranged in age from 42-54 years. We predominantly spoke to mothers of participants (5 of the 7 parents).

The research involved a number of activities which were designed to be enjoyable and engaging.

Data sets: ■ Young people 7: 2 girls, 5 boys aged 16-18

■ Pre ‘Fitbit’ semi-structured interviews x 7 parents

■ Pre ‘Fitbit’ semi-structured interviews x 7 young people (45mins - 1hour)

■ Post ‘Fitbit’ semi-structured interviews x 7 parents (45min +)

■ Post ‘Fitbit’ semi-structured interviews x 7 young people (45mins +)

■ 8 weeks of Fitbit use and WhatsApp data: conversations between participants and research team, photos and video diary of participants use of their Fitbit.

The project was granted full ethical approval by the Research Ethics Approval Committee for Health at the University of Bath. Informed consent was given from all study participants. The research team ensured that young people were not harmed

through participation in the research and utilised a range of approaches to ensure that young people’s voices could make an impact.

Ethics

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2. Findings

In reporting on our findings, we include the survey results as well as the words of the young people and families who took part in the qualitative phases of the project.

The young people surveyed were active users of a range of digital health technology. Young people were using technology from a young age.

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What digital tools are young people using?

General technology use

Children and young people’s use of internet enabled technologies has increased rapidly. Unsurprisingly, many young people have access to multiple devices for internet-based activity.

The digital tools used by the young people in our research reflect broader trends. Tablet computers and mobile phones are preferred devices and as children move from primary to secondary school, acquiring a smartphone becomes a priority (Livingstone et al., 2017). Most of the participants had owned a mobile and or tablet at a young age and at the time of the research, nearly all owned a mobile phone (97%).

Young people owned a mobile phone for different reasons. Some described being given a mobile phone at a young age because of parents’ concerns about their safety:

Yeah, they [parents] kind of just wanted to obviously make sure I was safe at the time like call me and that (Aria, 15, white British)

Oh, Christ. I got it just before I started secondary school because my mum wanted me to text her after my first day to make sure that I was happy and not crying, which was fine, although in the end, I ended up texting somebody else by accident, so she didn’t actually get that text message. (Andrew, 18, white British)

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As young people move through their teenage years, they are more likely to have access to or ownership of multiple devices. Young people in the age categories 14-17 years tended to have a higher number of devices (between 4 to 8), reflecting the trend towards mobile phone ownership. Some young people described the pressures to have the very latest device and how quickly these could become ‘obsolete’:

Yeah, so, for about a year, everybody had a BlackBerry and then it just died suddenly, just died. […] then I got an IPhone3Gs […] Just because, at that age, it just looked like the most amazing thing that’s ever been made ever, so, you know, just the amount of stuff you could do on it was, yeah, incredible. (Andrew, 18, white British)

I think everyone, literally everyone had one it was like the craze in like Year 5 so, yeah, at that age everyone had one so … (Liam, 17, Chinese British)

Digital technologies feature heavily in the everyday lives of these young people and devices such as mobile phones are used routinely and frequently. They use these technologies for a range of activities, including but not limited to social networking, sharing photos/videos, homework, watching media, listening and downloading music and playing games.

In understanding young people’s engagement, it is therefore crucial to move beyond an assumed binary between online and offline worlds and instead recognise how these are ‘interwoven’ (Hine, 2015). Young people routinely search for and share information about their lives and use digital technologies to communicate and form an integral part of their daily activity as part of a ‘culture of connectivity’ (van Dijck, 2013).

75%of young people owned their first mobile/tablet device aged between 8-11 years old

97%of respondents owned a smartphone with minor gender differences in owned devices

How many devices do you have in total?

What kinds of digital technology do you use generally?

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Figure 4: Types of devices used by survey participants.

Figure 3: Number of devices owned by survey participants.

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Health technology use

Many of these young people used mobile technologies for health purposes. Our cohort of participants are active and regular ‘health seekers’ (Nettleton, 2004). Young people in our research use a range of digital health technologies to seek out information, advice and learn about health and illness, mental health and wellbeing and physical fitness. This included websites, social media, wearable tech, mobile apps and other platforms and devices.

Many young people reported specifically using their mobile phones for health-related purposes:

70%of participants overall report the use oftechnology for health

55%use their mobile phone to learn about health

Young people use these devices for a whole range of health issues – mental health, menstruation, weight, physical activity etc. Notably, half of the young people in the research where already using digital devices to track different aspects of their health.

52%use apps to track diet, fitness and/or health

What digital technologies do young people use for health?

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How would you rate your health?

As Figure 5 shows, a large proportion of the young people perceived themselves to be relatively ‘healthy’.

These are figures which potentially bring opportunities for health care but also are a point of concern when we look at what types of digital health technologies young people are using and how they use them.

Smartphone (55%) is the main tech used to learn about health, with 70% of participants overall reporting the use of technology for health.

Percentage (use for health)

General health rating

Smartphone

1 2 3 4 5 6 7 8 9

Not user

Laptop PC

Desktop PC

Tablet

wearable

other device

Which technology do you use to learn about health or to keep healthy?

0 10 20 30 40 50 60

0

5

10

15

20

25

30

As Figure 6 shows, smartphones were the main technology used by participants to learn about health. Similar to digital technology use more generally, uptake of digital health technologies was influenced by what was deemed to be popular amongst their peers. In the example below, Luke describes how he was put off using a Fitbit because of the perception of his peers:

Someone was like, “How many steps have you done today?’ and I was like “I’ve done 8,000’ and this guy was just like, “So you count your steps? Doesn’t that mean you’re like a mum who’s trying to lose weight or something?’ (Luke, 16, white British)

Per

cent

age

Figure 5: Health rating reported by survey participants.

Figure 6: Technology used to learn about health by survey participants.

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How are young people using digital health technologies: One size does not fit all

Young people often select technologies that are relevant to them to meet particular needs as these arise. Moreover, they use technologies in different ways. Many participants felt that this flexibility allowed them to experience control over their health in ways that are often not available to them through traditional health care services.

Given this variance in what and how young people are using technologies, digital health technologies are not simply a conduit through which established knowledge is shared. In terms of learning, engagement with technologies does not result in the simple transfer of knowledge, but is influenced by complex entanglement between bodies, identity, existing knowledge and literacy and wider social context. Digital health practices are therefore complex and multiple. We describe these different practices in detail below.

Digital health knowledge: What are young people learning about health?

Participants described multiple health knowledges in digital environments. Young people come to ’know’ their body in varied ways, including through the use of numbers, visualisations and their own bodies/senses. They use these technologies primarily to learn how to be healthier, look after themselves and to achieve better physical fitness.

Young people do not simply ‘consume’ information online, but are also actively shaping health knowledge through the different media and material they produce themselves. Notably, social media platforms were considered to be important sites for learning about health. Patient experiences, training videos, blogs, vlogs, fitness and health images and other material are now commonplace on social media platforms.

The young people in the study reported that their learning about health through digital technologies involved a mixture of official websites (e.g. from health organisations such as NHS) and a range of different media. As indicated in figure 7, the survey data revealed that young people used a range of different online health content to help them understand how they could be ‘healthy’:

Participants use digital technology to learn how to be healthier (42%), look after themselves (34%) and how to be fitter (33%), but 45% worry about incorrect information.

44%YouTube is the most popular source of health information

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0 10 20 30 40 50

Official information sites have been rated as the most helpful source for learning about health.

Thinking about the online health content that has helped you understand ‘being healthy’ rank the following services on the scale from 1 (the least helpful content) to 5 (the most helpful content)

Figure 7: Services used to learn about “being healthy”, ranked by survey participants.

What kind of online content do you think has helped you understand health better?

Figure 8: Services used to understand health by survey participants.

Youtube

only official information from NHS, WebMD, Bupa etc

Information sites

News

None of it!

Instagram

Wikipedia

Friends through social media

Forums

Twitter

Official information

Information websites

YouTube

Instagram

Online forums

Friends via SNS

Facebook

Twitter

26%

30%

32%

56%

60%

68%

76%

82%

65%

57%

52%

29%

26%

18%

12%

7%

100 50 0 50 100

8%

13%

17%

15%

14%

14%

11%

10%

Rating 1 2 3 4 5

Percentage

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Figure 8 reveals that young people find different types of online content helpful to understand health better. Given that 45% of the survey respondents worried about finding the correct information, it was unsurprising that although YouTube was a popular source of information, official information sites (e.g. NHS) were seen as more helpful in terms of recognised and safe knowledge and that which would be more helpful in terms of enhancing their knowledge.

Medicalised and individualised understandings of health are apparent in terms of what young people are learning about health through technology. Often, platforms and apps emphasised particular risks associated with unhealthy lifestyles. For some participants, this was motivating, while for others, it was a perceived shift in transferring responsibility for health from the state onto the individual. The pressure they felt to demonstrate active responsibility for their health often led to anxieties and burdens for some young people (see sections below).

Multiple health information reaches young people or is discovered in different ways, and has advanced beyond simply entering keywords in internet search engines. The study participants engaged in a range of digital practices, including seeking out recommended health apps and sites, tracking and monitoring their bodies and behaviours through wearable devices, searching for health information online, and through producing, sharing and engaging with social media.

Young people often seek out information or use particular technologies for specific purposes as and when such needs arise. Our participants identified different forms of content:

■ Content they seek out for themselves (e.g. using search tools)

■ Content they seek out for others (over a third of our survey participants had looked up information for others)

■ Content which is automatically recommended or they are exposed to (algorithmic media based on their previous activity)

■ Suggested or recommended content from others (e.g. family, friends, people they follow online).

Many participants mentioned that they would search for information using digital technologies when they had concerns or worries (e.g. looking up symptoms for themselves or others) and when they wanted to change something about their bodies/health (e.g. lose weight or gain muscle). Some young people described actively seeking out the opinions of others online to get advice about certain health issues and liked having access to a range of different information:

Or I’ll compare stuff like sleeping, how much I actually sleep, what sort of time. Do you know Reddit? I go on Reddit a lot, see what other people are saying. I think that’s one of the best things that I look on, because it’s loads of different personal opinions. So, I’ll say something like – you can say anything on Reddit, “I haven’t pooed for two days” and everyone on Reddit is telling you what to do,

“Drink some OJ”. (Olivia, 16, white British)

Many of them described how sensory experiences, such as pain, would prompt them to look for information online:

Yes, that’s the only thing I really use for my health, although if – I usually look at things which are if I’ve got pain somewhere, I usually type it up and I don’t do that if it’s just aching but if it’s a long lasting thing then that is something I usually do. (Luke, 16, white British)

Reflecting a common use of online searching in relation to ill-health (Miah and Rich, 2008) young people often used apps and search engines to help make sense of physical or mental symptoms:

“Why is my arm hurting?” (laughs) or, “Why is my chest woozy today?” and stuff like that. If I have a problem, I’ll google it. (Olivia, 16, white British)

Over the summer holidays I got really bad headaches and I didn’t know why, so I tried to find out what was going wrong. I found out that I was deficient in I think a vitamin of some kind - I can’t remember which. I just searched up. It was a specific kind of headache so it was - like it just came and then went. So I looked that up and there were obviously many examples, but I looked through. And the one with the symptoms of which I compared to mine which was closest I thought - and I thought that must be it. (Bethany, 16, white British)

How are young people discovering information and content about health?

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Young people also actively look for information on behalf of someone else. Parents and young people gave examples of young people looking for health information for their peers or their families, for example parents:

In fact, Dylan [son] did this for me. He searched - what did he search? It was an exercise. It was for my arms and I - my son downloaded it on my phone. I’ve got little weights over there, so I was doing a sort of arms, tums and bums sort of 15 minute workout. And that was taken from YouTube, which I used to do. (Victoria, parent)

Sometimes, young people would not be actively searching for information, but instead would arrive at health information via suggested or targeted content (links, adverts etc). These promotions and adverts might be discovered when looking for other things, or targeted based on their previous search history:

Something I see all the time is adverts on YouTube, Snapchat and Instagram. And there’s ones that are online at the moment, and it’s a pretty gripping

advert about cold water shock and stuff because that’s something that - usually I skip through ads, but if it catches my eye enough, I gave them time sometimes. Especially if it’s just a ten second one, then that’s perfect for me really. (Luke, 16, white British)

Many young people were aware of adverts targeting them to become health and fitness consumers and purchase associated products. However, there was a lack of understanding about the processes behind this - how ‘algorithmic media’ (Carah, 2014) structured content tailored to an individual’s profile of activity, such as their likes and content shares. Young people were therefore subjects to the market and commercial power of algorithms (Beer, 2018).

Young people described following particular users (often described as social media ‘influencers’) who influence social media trends or share content of interest: fitness, for example. These accounts have a high number of followers or likes and can serve as a powerful educational force amongst peer groups. We describe this in further detail in the next section.

Young people are using different devices and taking up health knowledge in multiple ways.

While digital health technologies provide a number of opportunities, our research revealed potential harms and risks associated with digital health practices, particularly those associated with the use of social media and digital health apps. The experiences of young people described below point to the complexities of digital health and the need to avoid technological determinism; technology is neither inherently oppressive nor empowering. Many young people have experiences of digital which are both positive and problematic.

What are young people doing online: Digital Health practices

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85%

The influence of Social Media

The vulnerability of young people associated with their use of digital media has been well documented (Livingstone et al., 2017) particularly with social media. Social media use, however, can also provide benefits such as accessing social support from other young people going through the same experiences and helping young people feel less alone (Lupton, 2020a). Young people were active users of social networking sites (SNSs) and video-sharing sites which we collectively refer to as social media. The participants engaged with a range of activities through social media. Consistent with other research (Third et al., 2017; Goodyear et al., 2019; Lupton, 2020a), our participants reported both negative and positive aspects of use.

Socialising

Music (78%), and watching videos (72%) are the top three app activities, while Snapchat (44%) and Instagram (28%) are the most popular social media platforms.

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0 10 20 30 40 50 60 70 80 90

0 10 20 30 40 50

Figure 9 shows that there are a range of different types of social media and young people’s engagement with these technologies is varied. Our findings are similar to other research in the UK and Australia (Goodyear et al., 2019; Lupton, 2020a), demonstrating that social media was a powerful medium through which to learn about health.

As indicated in figure 10, young people had a clear preference for image and video based social media. Snapchat and Instagram were the most popular social media platforms by far.

Which of these apps do you use on your smartphone or tablet?

Figure 9: Apps categories used by survey participants.

Which is your favourite social media platform?

Figure 10: Favourite social media platforms reported by survey participants.

Snapchat

Instagram

Whatsapp

I don’t use social media

Other

Facebook

Tumblr

Twitter

Socialising (e.g Facebook, Instagram, Snapchat, Twitter)

Music

Watching video

Taking and editing photos

Gaming

Searching for information

Getting around (maps)

Shopping

News

Tracking fitness and sport (e.g miles run, strength training)

Tracking health (e.g BMI, sleep, blood pressure, periods)

Tracking diet (e.g calories, sugar and salt intake)

I don’t use apps

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Our participants talked about their experiences of engaging with different types of photo and video activity and undertaking image creating, editing and sharing.

Like, I probably prefer Instagram because people share footage of themselves and you can kind of see what they do and like how they get fit and what they do in their life. So you kind of think, ‘Oh well, if they can do it, then like you can!’ Like that sort of stuff. (Aria, 15, white British)

Further emphasising the importance of visual content, the survey data revealed that YouTube was the most popular online content-sharing platform for helping young people to understand health better. Steps to limit and control young people’s use of social media use are increasingly used in response to the now well-documented risks associated with these platforms (Third et al., 2019). In recent years, there have been calls for greater regulation of social media use in relation particularly to potentially harmful material such as that promoting self-harm or restricted eating behaviours.

Young people’s experiences revealed the complexity of social media spaces. As reported below, many of the participants reported negative physical and psychological impacts of social media use which have been well documented in public discourse (Livingstone, et al., 2017), particularly those associated with body disaffection, anxiety and mental health. However, they also described the way in which social media acted as a source of information, but more uniquely, a point of emotional support and connectivity with others. Interviews enabled us to explore this in further depth and revealed that being able to access the experiences of others through video resources was highly valued. Connecting with others who share similar experiences (emotional distress, similar health problems/illness, shared interests) helped them to feel less isolated. This was particularly important when it came to very personal and sensitive issues such as mental health.

Social media and YouTube have become important sites for advice and support around a range of health-related issues, including but not limited to weight training, physical activity, depression, mental health, weight loss and sensitive health concerns. Young people also identified social media as an important space to learn about health from peers. They felt that peers better understood their health needs than most adults. Some of our participants suggested that such spaces were also appealing because they were environments in which older adults often didn’t belong and therefore didn’t dominate health messages. For this reason, as well, peer-generated material was highly valued. Our participants highlighted the importance to them of particular modes of video blogging (vlogging) such as ‘confessional’ stories, whereby vloggers shared powerful and intimate stories of their experiences which might not be accessible elsewhere. Such personal insights were described as a uniquely positive feature of peer-to-peer sharing in social media which ought to be better optimised in health promotion for young people.

Youtube (44%) is the most popular source of health information.

16% Fitness is the most popular category of health-related videos watched by participants. although 58% report that don’t generally watch any health videos.

44%

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0 10 20 30 40 50 60

0 10 20 30 40

Thinking about the kind of videos you watch online, do any of them relate to health/fitness/wellbeing?

Figure 11: Type of health-related content watched online, as reported by survey participants.

What do you think you learn from using digital technology for health reasons?

Figure 12: Key goals for learning about health with tech, as reported by survey participants.

How to be healthier

How to look after myself

How to be fitter

Nothing, I never use it for health information

How to search for good health information

How to look after my mental health

How to avoid bad health information

Different opinions on health matters

What my friends are doing for their health

Other

No - I dont think so

Yes- I look for fitness videos

Yes- I like watching videos about health

Yes- I like watching videos about wellbeing

Yes - I watch videos to help me sleep

Yes - I watch videos to help me sleep

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Gender was an influential factor in terms of the type of content young people watched. Boys often described wanting to learn about health and fitness from other young men/boys, particularly in terms of developing a muscular physique. YouTube was therefore a common platform for learning about weight training.

Yeah, I don’t want to sound vain but my body is very important to me. I don’t mean as in like, my body is important to me because I want to look good, I mean important to me that I stay healthy and fit and sometimes it is inspirational. Like I will watch a video and think, ‘Oh, I want to try that. If he can do it, I could do it’. It is obviously not going to come as easy as that, but I could put effort into it and work on it and it would be like my friends would tag me in something else, like, ‘Oh, look at him. He is doing well’. It is like a competition, a friendly competition and then it gets us to work harder. So yeah, it is, like… I do like to watch, like, workout videos because it is like, oh… it is good. I like doing that. (Tyler, 17, black British)

These spaces bring together multiple knowledges. In the case described by the participant above, YouTube is described as a social site of learning through which both informal pedagogies (associated with social media) and more formal (professional expertise) modes of learning interrelate. Some participants spoke positively about this, referring to the potential to find very specific or unusual health related material:

I follow this thing called Medical Talks that talk about, like, people with illnesses and like, maybe abnormalities and… yeah. (Anna, 15, Asian British)

YouTube and other social media platforms reflect the digital landscape of health knowledge. In these spaces young people’s bodies are at the intersection of multiple advice/knowledge and relationships with new forms of health expertise.

Young people watched a range of different health related videos online. Survey results indicated that fitness was the most popular category of health-related videos watched by participants.

I think one of the nice things, the positives about YouTube, is that it’s not just made of people who are there because they’re there to just post videos or whatever; there are some professionals on YouTube. So, I think you have to take everything you see with a pinch of salt, and one of the nice things is that they often explain things in a way that people of our generation can understand. I think that’s the main benefit of it. (Maggie, 17, white South African)

The comment above reveals the complexity of digital media and how social media, pedagogy and ‘expertise’ come together. Maggie describes YouTube as a digital site of learning where both informal pedagogies (typically associated with social media) and more formal (‘professional’) modes of learning interrelate (see also Fullagar et al., 2017). Rather than seeing digital spaces as promoting either formal or informal pedagogies/knowledge, the example above shows how multiple forms of knowledge are operating in digital landscapes simultaneously.

As learners who also ‘produce’ knowledge, the young people describe how they are not simply passive learners of biomedical knowledge transmitted by ‘experts’ and thus actively search for knowledge in informal spaces such as social media. For example, the boys discussed the importance of learning from other young men/boys about weight training through YouTube videos. However, the production of this more ‘authentic’ and ‘relatable’ knowledge is not free of medicalised mediation. The idea that young people ‘take everything you see with a pinch of salt’ reveals how the opportunities for learning requires work on behalf of young people to understand what is knowable and intelligible in terms of formal ‘expertise’ within informal social media platforms. While social media platforms might make the pedagogic mode more accessible for young people, this also requires work in looking for signs of expertise as made knowable by neoliberal models of health (e.g. qualified health expert, fitness trainer etc). In this regard, the boundaries between formal and informal sites are blurred across a range of digital practices such as social media, apps and self-assessment/diagnostic tools, such that the ‘expert’ or pedagogue is no longer easily identifiable.

Fitness is the most popular category of health-related videos watched by participants.

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Image-based social media such as Snapchat and Instagram were also popular platforms.

Image-based social media were often used by our participants either to share images of themselves or to search for images of other people. The online content in these platforms can be sources of pleasure, empowerment and engagement as well as surveillance, anxiety and disaffection. These idealised images are read against the images of their own and other’s bodies, such that learning through digital images is mediated by experiences of shame, pleasure, guilt, a theme explored in our focus group discussion with young people:

Harrison:

I think it’s a lot about people seeing these summer bodies, or getting hate from other people; and it’s just, like, little things that bug them can cause them...( 15, white British)

Elliot:

Build up. (14, white British)

Harrison:

Yeah, build up, and then they start thinking, “Oh, three people have called me fat now. Am I actually fat?”

Young people repeatedly pointed towards the powerful role of their bodies which intensified the learning taking place, particularly through social media. For example, the desire to achieve narrow bodily ideals in images circulating across social media provided a source of pressure and becomes a key aspect on the way in which learning takes place. In the responses above, the desire to achieve the ‘summer body’ portrayed in images found online is also shaped by previous experiences of the shame of ‘being called fat’. In this sense, we cannot separate online/offline worlds. Young people’s images online are often ‘tagged’ and this can increase the visibility of their bodies as images circulate through ‘peer networked cultures’ (Renold

and Ringrose, 2017: 1066). Young people highlighted the anxieties produced by lack of control over what happens to images of them once they were online; for example, even if they were to un-tag a photo, it could continue to circulate in existing networks and remain available for viewing.

Some young people described the influence of powerful hashtags associated with health. These hashtags are essentially words which act as a metadata tag which can then be searched for so that others can find content within that theme. One popular hashtag was ‘fitspiration’ or the shorted form ‘fitspo’. These hashtags are used to promote ‘healthy’ living to achieve perfect bodies, emphasising individual empowerment and strength. Images of toned, thin, bodies in tight fitness clothing are often accompanied by moralised slogans which are deemed to be ‘inspirational’. These fitness images represent a way of thinking which reduces health to a matter of individual responsibility and continual self-improvement and overlooks complex socio-cultural inequalities.

Girls in particular reported the pressures to learn how to create and modify digitised images of their own bodies in ways which looked like the ‘perfect healthy body’. This involved editing and sharing images of themselves whilst also seeking out, commenting, liking and circulating images of others. The circulation of celebrity and peer images through mobile and other social media platforms affects young people in significant ways.

Probably [follow] mostly Saffron Baker because she does like, I don’t know, I like seeing what… because she goes to the gym a lot and like eats healthier. I like to see that and I like some celebrities like Charlotte Crosby. (Aria, 15, white British)

In following celebrities and ‘social media influencers’, young people were learning about the consumption practices associated with achieving bodily ideals:

Yeah, I follow like people that make like smoothies and stuff like that and healthy stuff and also follow this girl that does Pilates. (Anna, 15, British Asian)

Through exposure to advertising campaigns and social media ‘influencers’, young people were learning about the commodified performances of ‘health’: owning particular branded fitness clothing, goods or technologies and foodstuffs/supplements.

Research by Macisaac et al. (2018) in Scottish secondary schools revealed the extent to which online presentation and the development of a celebrity-esque culture within social media had significant effects on the way pupils behaved and viewed themselves within Physical Education

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classes. Similarly, our research reveals how young people’s expectations of what their own bodies should look like are influenced by often idealised and unrealistic images of ‘perfect’ bodies circulating in social media. Images of ‘perfection’ within social media movements are framed by portrayals of ‘fit’, ‘healthy’ and ‘strong’ bodies. Of concern are the ways in which these representations imply that young people should aspire to be virtuous and empowered and that ideal bodies could be attained through hard work and ‘clean living’ (Tiggemann & Zaccardo, 2016).

Reflecting key skills learned through media literacy in schools and elsewhere, many young people demonstrate knowledge that many of these images are fake or unrealistic.

Yeah, because I think like these people like although you see pictures of them, you don’t know what they’re really doing. Like, they could have like a protein shake, for example, in the background as if they’ve been drinking it, when really they probably haven’t, they’ve just put it there for effect. Whereas like, real people that aren’t celebrities or something, they haven’t got all the money and that to be paying for like their own personal trainers and all these supplements and vitamins and that, so they’ve done it all naturally. So I would like kind of believe it more and it makes me believe it more than celebrities. (Aria, 15, white British)

Yet, at the same time, many of our participants reported continuing to work on their self-representation in ways which aspire towards meeting the expectation of these narrow body ideals. For example, learning a set of digital practices to edit photos, to pose in the right way and even to know how, when and where to share images.

So, I … yeah, I kind of just look and kind of compare myself to the internet. Which everyone’s is kind of like … like everyone always goes like, “Oh, you shouldn’t compare yourself to anyone,” or whatever, but everyone does. (Bethany, 16, white British)

Such images promote often unachievable body ideals, which often led to some young people feeling anxious, displaying body concerns, disaffected with their bodies and engaging in unhealthy dietary practices. Physical activity was constituted as a type of highly individualised work focused on shaping specific parts of the body to enhance individual appearance. Consequently, young people were searching for health/fitness content in an effort to transform their bodies.

Participants described a range of activities and undertook techniques to monitor each other. Liking or sharing or commenting on each other’s photos or ‘statuses’ about health (e.g. miles run, meals consumed) formed micro practices of judgement and comparison which were a source of anxiety for many (see Rich et al., 2018). For example, the value of an image or comment was indicated by the number of likes or shares they might receive once an individual had posted it. These digital practices were highly influential in terms of how young people engaged with their own bodies. Online peer to peer surveillance or what has been termed ‘lateral surveillance’ (Andrejevic, 2005) was therefore common practice and an assumed feature of their everyday internet use. Many revealed that it was difficult to opt out of these immersive and ‘always on’ media networks (see also Hardey and Atkinson, 2018).

Dominant discourses pertaining to body weight, shape and health are encoded in the regulative and instructional principles of the digital practices young people are learning online. Social media can further intensify the ‘body image’ pressures generated through media norms.

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Our analysis displaces the often-assumed binary of online/offline bodies and reveals the materiality of the digital practices young people engage with in and around ‘health and fitness’. For some young people, the consequences of failing to meet the expectations of these body codes can be incredibly harmful. Many are aware that images are unrealistic but they still want to cultivate their bodies so that they look like those in these online images. For many this prompted body concerns, disaffection with their bodies or contributed to unhealthy dietary practices involving constant modification:

I think, in society, one of our main values is how we appear physically, and people go so far just to maintain their physical appearance. And of course, being healthy on the inside is something that I think is really important. There’s a limit, there’s a fine line between going too far and developing an obsession with fitness, and then just being healthy. And I think, a lot of these fitness apps, if you’re not seeing the results you want to see instantly ... If ever I do a workout, I’ll look in the mirror and be like, “Why am I not ripped yet?” (Leif, Black Carribean, focus group)

Young people referred to a wide range of sometimes inappropriate information or images online and this raised concerns about inappropriate and unregulated material and the extent to which this can be accessed easily by very young children. While this knowledge will be varied, and in some cases potentially helpful, concerns have been raised about the extent to which young people might be contributing to or accessing digital media that not only promote health, but which also relate to ill health or injury such as eating disorders, self-harm or drug use. For example, concerns have been raised about ‘thinspiration’ images and other ‘thin-ideal media content (i.e., images and/or prose) that intentionally promote extreme weight loss, often in a manner that encourages or glorifies harmful behaviours characteristic of eating disorders.

Concerns: One of the key concerns emerging from the data is how young people are able to navigate health knowledge online, particularly in terms of sourcing safe media through social media which was reported as ubiquitous presence in their lives. Young people described the extent to which they observed and compared the images and comments about health and fitness of other people. With the online profiles of others easily accessible, this increased opportunities for viewing images and potentially comparing their appearance to others. Parents expressed concerns about these social media risks

and were unsure how to support their children and advise them on safe use. From the perspectives of our participants, it is clear that both young people and their families share serious concerns about exposure to ‘health and fitness’ related material in immersive and networked spaces.

Given rising social anxieties about being locked into digital communication systems (Hardey and Atkinson, 2018) and the difficulty of opting out, it may be difficult for young people to resist some of the social media body pressures reported above, which can have significant impacts on their quality of life. The evidence from our research identifies a number of potential risks associated with digital health practices. These include mental and physical distress; misinformation; obsessive and or disordered practices related to dieting, weight loss and physical activity; body disaffection; and narrow and reductive ways of understanding complex health issues as quantifiable.

Recommendations: Young people need to be supported through their engagement with material online, particular harmful material which might lead to disordered or harmful practices. Other research evidence has highlighted these concerns in relation to specific mental ill-health conditions such as pro-anorexia and pro-suicide and self-harm. Our research reveals the pervasive impact of online material on young people across a significant population. Social media and influential accounts (e.g. vloggers) with high numbers of followers are particularly powerful spaces for young people to learn about but also create and share knowledge.

Disaffection and obsessive practices

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Monitoring, tracking and quantification: ‘it’s almost a race to get to eight thousand or ten thousand steps’

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The majority of young people in our research can be described as ‘new digital health consumers’ who were concerned with ‘a variety of needs, relating to fitness technologies, lifestyle products and body types that rely on constant data-monitoring and sharing (Lupton, 2016, 2017a; Hardey, 2019: 992-3). Consumption of digital health tools provided new opportunities and expectation to measure, track, monitor and regulate their bodies and aspects of their daily lives and behaviours including sleep, calorie intake, exercise/physical activity, mood, heart rate and sleep patterns and quality.

These technologies and lifestyle products include mobile apps, wearable devices with sensors and other technologies which can be used to collect data. Such devices offer market solutions to health problems by encouraging individuals to purchase devices to help them stay fit and healthy. In these cases, users purchase apps that capture data about their bodies which are designed to help them make more informed decisions about their health. The growth in these technologies represents a shift towards personalization and individualization of healthcare (Lupton, 2016, 2017a). Within such systems, health increasingly becomes the responsibility of the citizen, who is encouraged to become a productive consumer who uses health data to become more informed and undertake practices of self-surveillance. This shift in the responsibility for one’s health has significant implications for young people, given the reported anxieties many of them experience in relation to their bodies and health.

Many health apps now have the capacity for monitoring and self-tracking aspects of the body and health such as weight, sleep, menstruation, diet and physical activity and mental health (Lupton, 2017a). These health and fitness apps continue to be amongst the popular of health apps available online. Although wellness and lifestyle apps and devices now represent a critical mass in the digital health landscape, they are not subject to the same forms of regulation (Powell, Landman, & Bates, 2014) as are technologies which are categorised as medical devices.

In phase 3 of our research, seven young people shared their experiences of using a wearable health and fitness wristband (Fitbit Charge). Wearable technologies, such as wristbands fitted with motion sensors have the capacity to track various activities such as walking, fitness activities, cycling or sleep. They are often used for managing and monitoring various aspects of ‘healthy living’ including physical activity, weight loss and food consumption. With the development of wearable technologies, it is no longer necessary to take out a device, turn it on and navigate to the information we seek. Instead,

with the use of sensors and the capacity for devices to connect with each other, some technologies function as if they were part of our body (Lupton, 2016, 2020a). Reflecting the way in which these devices are always on and tethered to our bodies, these devices are categorized as ‘everywear’ technologies (Gillmore, 2015). For some, using a wearable device was so routine and habitual that it felt almost like an extension of their own body:

I’m was always checking on it [Fitbit] I don’t even realise that I’m checking it, yeah. It’s just natural now, just to flick it or tap it. (Dylan, 17, mixed race British)

As with any technology, it would be reductive to think of a tracking device as wholly positive or risky. Many activities bring both opportunities and potential risks to young people. Given their popularity, these technologies provide a common means through which young people come to learn about their health and their bodies through forms of quantification.

Participants often described regular use of self-tracking apps and wearable devices. Goal setting, targets, rewards, comparisons and competitions were experienced differently by young people. Some were interested in data, for example how many steps they took each day, but this did not change their activity pattern. For others, this drove them to try and improve on their scores.

For some this was motivating, and enjoyed the process of setting targets in relation to quantified data (e.g. achieve 10,000 steps a day):

But also, if you say you have these apps or fitness bands or whatever, and you get data – so, per month, you see, “Oh, what is my progress for that?” and then you see, say, my previous month, how well I did, or how much exercise, how muchsleep, whatever, I got. And then you see, “Oh, I want to beat this milestone next month,” and that sort of gives you that burst of energy, and if that carries on, it will just get better. (Elliot, 14, white British)

Other young people reported enjoying ‘gamified’ (Whitson, 2012) aspects of tracking such as rewards and competition tables:

Well, I have compared it with people because I don’t what it is a satisfying feeling when the watch vibrates and it gives you the little fireworks and stuff. And it’s like, congratulations, I have learnt the amount of steps I usually do and my heart rate and things like that. But it’s not something that I’d usually do - like learn, like use in the future if that makes sense. (Luke, 16, white British)

Young people described the experience of ‘datafication of the body’ (Mayer-Schönberger and

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Cukier, 2013, p. 48), of understanding their bodies and health through numbers and data. Some found enjoyment and pleasure in monitoring what became a ‘data double’ (Haggerty and Ericson, 2000; Ruckenstein, 2014) or ‘data self’ (Lupton, 2020b). Some described the ‘pleasure’ experience when meeting daily goals and targets (such as walking 10,000 steps) or where they could see some form of progression through visualisations of their data.

Yeah, most of the time it seems like I am having a competition with others, but it is a competition with myself, trying to, not beat myself up, but also trying to succeed my own goals. I set a goal and say, “No, I can be better than that. I can be better at that. I can do better”. You know? (Tyler, 17, black British)

However, when asked what these figures meant, many participants were unsure. They felt these were arbitrary figures (e.g. 10,000 steps a day) but nonetheless wanted to try and improve on them. Such confusion was further compounded by visualization of their data i (see next section). While tracking might lead to an interest in their personalised health practices, young people had difficulty in making sense of how their personal health or fitness was ‘classified’ (Hardey, 2019).

Often the motivation was to use these technologies for transforming their bodies, sometimes focusing on specific parts of their bodies

I have a gym app as well. Which gives me new workouts, so like different parts of the body. You tap a part of your body you want to work out, and they give you different things (Dylan, 17, mixed race British)

Some young people described the opportunity to gain immediate insight into their body as both important and convenient.

Oh yeah, yeah definitely I’m always - as soon as I run for 10 seconds, I’m, “Oh, what’s my heart rate?”. I always check it all the time. (Dylan, 17, mixed race British)

Many described the pressures to use data to enhance their body, optimisation of physical or mental capacities, orienting them towards self-monitoring but also competition:

It’s almost a race to get to eight thousand or ten thousand steps. (Luke, 16, white British)

For many of our participants, self-tracking led to new forms of self-knowledge which shaped how they thought about themselves and the ‘healthy body’ in significant ways. In this regard, through engagement with these tracking devices, young people as ‘learners’ are encouraged to learn about particular practices of health which emphasise

progression, self-empowerment and quantification: ultimately learning that it is up to the individual to negotiate health knowledge and undertake regimes and techniques to achieve desired goals and bodies.

For some, these technologies therefore led to short term changes in their health behaviours and practices:

Actually, wait, I would say – there was actually a couple of times where I did get below 10,000, and I was going to go for a bus and I did actually decide to walk. (Dylan, 17, mixed race British)

Young people were highly aware of the ‘promise’ of these apps – that the apps would motivate and empower them. Young people were learning that not only would these technologies help to reshape their bodies, but it would transform their lives: for example, through a corresponding change in their mental health. Such images of ‘happier individuals’ as a result of engaging with commercial health products are populated in much of the marketing material of apps and wearables (Lupton 2016, 2020b; Rich, 2019).

Interviewer:

It sounds like you like having some targets along the way, or milestones to beat.

Rose (17, white British) :

I find that loads of people take progress pictures, and they see that as a way of... “Oh, that’s what I was like three months ago. Now I can see my progress and everything,” so that’s a good … You know you’re doing it for yourself then.

The comments above describe health apps which invite young people to engage as dutiful biocitizens (Halse, 2009) by demonstrating ‘digital self-care’ (Lupton 2013, 2017a; Pantzar and Ruckenstein, 2015). The expectation – indeed promise – is that through this learning they will develop the digital knowledge or literacy to make sense of their data and their activities and make any necessary changes to their health practices. Acting as ‘informed patients’ (Lupton, 2013) who seek out information to stay healthy was something they were encouraged to do by others, including parents:

Yes, yes. Another good thing about it is that it will encourage the kids to seek out their own information as well as they get older. (Anthony, parent)

These digital technologies play an important role in the extent to which young people work on their bodies in ways that are driven by the expectations to meet particular ‘data norms’. They come to understand their bodies and selves through data and processes of ‘quantification’ (Lupton, 2016, 2020b).

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However, engagement with these devices led to the generation of a lot of data and detail. Of significant concern were the reported levels of anxiety associated with tracking and monitoring health activities. Tracking devices and apps use expert classification systems (e.g. Body Mass Index, or step counters against established norms of 10,000 steps). Once these data were collected, young people might also receive advice about what the information tells them and what they should do (e.g. achieve more daily steps).

Probably if – like say it was like an app that was also linked to like Fitbits. They have, like, FitStar, which is like a coaching app which also links to your Fitbit app, so it’s, like, a lot easier to then use it. (Alice, 14, white British)

For some participants, these affordances led to forms of comparison and surveillance and accentuated the need to demonstrated changes in that which was being measured. Some young people described how their families had ‘competitions’ or ‘leader boards’:

All my family have one [Fitbits], so it’s like a bit of a competition who can do the most steps. Yeah like, on the app for Fitbits there’s a leader board. (Bella, 15, white British)

Use of these technologies and comparison of data was often influence by significant others, such as family members:

My dad, he’s quite a sports nut, so he has all the technology you can think of, for his bike because he really likes cycling. So he’ll be, like, “You should get this app and then we can link ours and then look at far we’re both going in a week”. So things like that, just my dad mainly. (Daphne, 15, white British)

Health and fitness apps can therefore promote modes of learning that ensure young people are developing forms of health knowledge and literacy based on monitoring and regulation of their bodies and lifestyles. The integration of these classification systems, along with expert ‘advice’ (e.g. increase your training/goals) can act as powerful messages for some young people through which they learn about self-management. Furthermore, this can shape how young people judge themselves or others in relation to these ‘norms’ or ‘data targets’.

Many of the young people in our study revealed how they worried about failing to meet targets, or of failing to achieve the desired bodies.

A little bit actually, because I know a couple of days, I wouldn’t get over 10,000 [steps]. I was like, why haven’t I done that, have I not been walking enough? (Dylan, 17, mixed race, British)

Others suggested that they used these apps in positive ways to help address forms of embodied distress or concerns about not eating enough:

I’m really bad with my appetite; I do want to put on weight, but I think because of my anxiety and stuff, often if I feel anxious - I just won’t be hungry. Yes, so I think an app to remind me to eat, I think that would be really good (Olivia, 16, white British)

Alarmingly, young people described the relationship between using these types of digital technologies and an approach to working on the body as a ‘boundaryless project’ (Petherick, 2015, p.363; Evans et al., 2008), with no limits:

Because it is, like, well you have reached a goal. There is no finish. There is never a finish. You need to keep going ... we will see a video of something, or someone will see a video and then they will tag me in it and be like, “Oh, I tried this today. I can do 10 – 10 reps, 10 sets”. Or whatever. And then you would be like, I can be even stronger than him, I need to do more than him. I will do even more. I will do 12 and then I will … like, I will do 14 and it is kind of like a… it is a competition at the end of the day. (Tyler, 17, black British)

Through processes of quantification, surveillance and the sharing of personalised data, these digital environments can lead some young people to engage with forms of self-monitoring that has been linked with disordered eating and/or exercising (Evans et al., 2008). These potential risks do not always translate to harm and some young people might be more vulnerable than others. Some young people described how they were subsequently identified as being ‘at risk’ and others had put measures in place to control their digital health use. For example, this included the removal of certain trackers or devices from young people’s use.

I used to have an app as well where you log like your food and sports, but then that became a bit more obsessive so I deleted that [...] It was me and my sister. (Daphne, 15, white British)

In our focus group discussion, young people were able to offer critical reflections of the pressures associated with quantification of their health:

The use of health and fitness apps can contribute to some young people over exercising or engaging in harmful dietary practices.

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Fitness is not a scale you can keep going up. At some point you have to stop, it’s not like bike riding where you can get faster and faster with bike riding and there’s no limit to how fast a human could go (there probably is) but there is a limit to how much humans can go with losing weight. Once you’ve got to a certain point, the fitness app should be “Alright, you’ve lost enough weight, now try to sustain this, don’t try to lose more”, so then they [the person using the app] should try to focus on other things. There should be a limit to your goal, it shouldn’t be to just lose weight, it should be, lose weight until you get to this point and then build muscles, but don’t build muscles too much or you might damage your body. (Simon, 13, white European)

I think if you’re going to have an app [a fitness app] it needs to tell you when to stop ... to stop you going too far. (Elliot, 14, white British)

By comparing themselves with quantified data and with images online, some young people describe

themselves as, ‘lacking’ where their health or bodies are ‘quantified’ outside of ‘norms’ (e.g. overweight, underweight). Many invest considerable time and energy using digital tools to acquire insight about their bodies and use this information to try and achieve particular goals with reference to what is deemed ‘normal’. Their comments indicate the complex negotiations that are undertaken as part of the process of becoming a ‘healthy’, fit citizen as being promoted through digital health.

Recommendations: ■ There is a need for online regulation for

technology companies and development of codes and regulation in relation to monitoring and tracking.

■ Further guidance and resources are needed to help those who have responsibility for young people better understand the risks associated with health tracking.

The labour and burden of digital health practices

In the Fitbit study, some of the participants described enjoying wearing these devices initially because it prompted interest from others, including questions about why they were wearing them. Overall, however, consistent with other research (Goodyear et al., 2019), engagement was often short term and most participants quickly became quite apathetic about using them.

Accumulating and sharing health data/information reflects a broader expectation of individual responsibility for health (Lupton, 2013, 2017a; Fotopoulou and O’Riordan, 2016). While some young people enjoyed the opportunity to gather data about their health and bodies, others described what Beer (2016) has observed as ‘labour’ in collecting data and maintaining their ‘fitness’ profiles. For some, this became a burdensome activity both in terms of collecting and tracking data but also making sense of what this data actually meant:

Not really, I just find sometimes it’s just like boring to have to, like, every night just track, like, what food you ate. It’s just like I know what food I ate, so it’s like, what’s the point in you having to track it again? (Alice, 14, white British)

Even having to wear a device was described by some as a burden:

Yeah most of the time I’d just forget or I’d misplace it or I’ll just generally forget to put it on in the morning because I was in a rush or whatever (Tyler, 17, black British)

Another specific concern related to the volume of quantified data being generated about their bodies. A significant amount of data is being produced through the things that young people do whilst using digital health technologies. As these health activities are tracked, these data are then transformed into different forms: for example, visualized (graphs) or in some categorization of their health (Lupton, 2020b). As such, measuring is not a neutral practice, but creates definitions, categories and labels about a young person’s health. Our participants talked about feeling overwhelmed and sometimes confused by the volume of data and also of the work involved in having to make sense of and interpret ‘fitness classifications’ (Hardey, 2019). This involves work by the user, for example in making sense of how metrics or graphs actually aligned with their lived experience of their bodies and quality of life.

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Even simple categorisations may be difficult for young people to make sense of. Luke, one of the participants in our Fitbit study, described looking up his Body Mass Index via an NHS website, but not having much understanding of what the figure meant in terms of his health:

I didn’t actually download it, I just did it on the NHS website, but the reason I used it is because – well, it’s just I’d like to know where I stand in terms of my friends in terms of BMI and just how healthy I am, because I think I’m just that average BMI. To be honest, I’m not really that clear on what it means and stuff. If it’s in the green zone then I’m happy, but I’m not really sure why it’s in the green zone. (Luke, 16, white British)

Luke also described feeling confused about how to make sense of the sort of data presented in Figure 14: in this case, about the steps he was achieving:

It doesn’t tell you anything – like if it’s good or bad. It doesn’t plot it on a graph or anything. Because I would really like that – when you see something on your graph and you think “Wow!” … Well, I’ve learnt, I haven’t really learnt anything that I’ll use in the future. But I do enjoy looking at the stats and stuff on my phone and how many steps, because it’s almost a race to get to eight thousand or ten thousand steps. (Luke, 16, white British)

The young people in our study describe the process of making sense of their health data by interpreting

and comparing against ‘other’ knowledge. A key challenge for young people when using digital health technologies is the tension and differences experienced between what ‘data’ tell them and what they experience in and through their bodies. Participants regularly compared ‘data’ of something being measured (e.g. sleep, physical activity) with the knowledge they had formed through their own bodily or lived experience. In some cases, this can lead to a source of resistance to digital data. Some felt that tracking was unnecessary and that they would rather trust their own sensing, feeling body:

Yeah. See, with tracking calories and things like that, I kind of know how many calories I burn, just from knowing what I do already. Like I know how much a 45- minute run’s going to burn, and how much walking’s going to burn and all of that, so I just have it in my head. I don’t need to know certain things. And I wouldn’t use – like if I had like a medical condition and there were apps for it, I would use it. […] Everyone has their way of calming down, it’s not necessary to have to breathe. You don’t need something [breathing feature in FitBit] to make you breathe slowly. (Adam, 17, white British)

When reviewing quantified data, young people spoke of how they compared these metrics with different experiences felt through their bodies, such as comfort, stigma or pain. Participants described the ‘extra work’ needed to reconcile the differences between what data tell them, and what their bodies tell them. Therefore, tensions emerge through body knowledge and the biomedical knowledge which comes to define their bodies as knowable through data collection and quantification.

Whether or not this is seen as a burden was shaped by wider expectations of what technology should do – its capacity. This is captured by Olivia, who describes her experience of what she found frustrating about using a Fitbit:

Some of it was really stupid. Like, there was things for, like, eating and drinking, but you have to log it each time you drank so then it will show you how much you have. I just think surely that defeats the point. I don’t know how much water I’ve drunk. I thought you’re meant to like feel it with my pulse or something. What if I forget as well? Everyone forgets. So I was pretty annoyed. (Olivia, 16, white British)

For many young people, using tracking devices was described in a way that suggested they felt apathetic about the experience. In phase 3 of our research, where young people used a Fitbit for eight weeks, many reported both ambivalence and apathy towards ‘tracking’.

Figure 14: Screenshot with example screen from a fitness tracking app.

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Use of these technologies in some cases led to changes in health practices but engagement was often short term.

Our participants reported feeling bored or frustrated about using their Fitbit, particularly in terms of monitoring their activities.

I don’t know if I love it. I mean, I enjoyed the experience of using it and I’m glad I used it, but actually in the last few days, I feel like it’s just been a bit annoying. I’d rather not have it. But I don’t know, maybe it’s just I’m preparing myself for the loss. But I don’t feel like it’s that much of a loss, I can do without it and this [the Fitbit] is just more comfortable on my wrist as well. There’s actually pros and cons that it’s not just, I don’t lose that much from it, I think. And to be honest, if I was keeping it, I’m not sure if I would carry on using it that much. I’m not sure, maybe I would. It’s good for when I do exercise, but if I’m like boxing or something, keeping it on my wrist just doesn’t work, because I’ll have to have the glove over and stuff like that. So for that side, it’s not practical. (Liam, 17, Chinese British)

On the one hand, there was an initial interest and a desire to follow trends of digital health, but the participants also described not finding much value in their use. Consistent with the findings of others (Goodyear et al., 2019), our participants reported feeling quite excited about initially using the Fitbit, but after a period of novelty they became far less interested or engaged with the fitness band and the data it produced.

Far from motivating, some young people referred to the ‘nudge’ technologies within certain digital health devices, such as alerts and prompts, as intrusive and ‘nagging’ them to be active:

It was just like a bit like sluggish, and it kept on nagging. (Alice, 14, white British)

I would gather that, certainly with, kind of, certain exercise apps, it will try and take over parts of your life and be quite invasive in that. (Andrew, 18, white British)

Yeah it does do that, it’s really annoying. And you think, shut up! (Olivia, 16, white British)

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Survey results revealed that relatives, health professionals and sports/fitness coaches are the main groups that encourage use of digital technology.

Concerns have been raised about the extent to which these technologies are acting as ‘key techniques of governing’ young people, particularly within education settings (Williamson 2016, p. 2). Some young people reported the concerns about organisations or individuals pressuring them to use certain technologies:

Umm, I don’t think I’d be too keen on having it because I don’t think I’d use it. It would just clutter up my phone really. And also, I find the Change4Life adverts incredibly irritating, so that’s already prejudice me against it. Umm, ugh, the theme tune, the plasticine people, literally everything about it … Yeah, when I was a lot younger, I used to be a lot fatter than I am now, and so I had a lot of, a lot of, that kind of stuff put towards me, and that just angers me …. Yeah, I found it patronising and quite invasive in a lot of ways. (Andrew, 18, white British)

Some young people described how certain communication platforms, such as WhatsApp, were used for purposes of discussion or instruction about health, sometimes placing them under ‘surveillance’:

Yeah. I mean especially with, like, football mates. I calculate data with myself and because there is other people on my team as well that have coeliac [disease], I think two other people, we have a similar rota, similar data, similar diet plan, similar training plan, similar exercise programme. And it is kind of comparing our data, saying how we feel at the end of the week. Not just us three, but like everybody in general. How we feel at the end of the week, how maybe this bit of training helped us more than this bit definitely did. (Tyler, 17, black British)

Young people described the ways in which they were encouraged or pushed to use certain digital health technologies:

My Mum’s recommended to me like the step apps and stuff. Especially a while ago, because I used to do a lot of hiking. (Bethany, 16, white British)

It was actually my music teacher, like, from, like last year. And also in school, we have, like, these seminars where people talk about some stuff. And meditation was mentioned. And they said, like, the apps could be good. But I’ve never had to use one of them I suppose. (Liam, 17, Chinese British)

Coaches also used technologies to explore and analyse young people’s sporting performances with them:

We post drills [to a WhatsApp group]. So when we do a drill, the coach will film it and then we’ll put it on there and then sort of analyse it. (Dylan, 17, mixed race British)

Parents also reported using technologies to monitor their children’s health:

Just looking for type of food that I’d be putting in lunchboxes, how much exercise they should be doing, sugar content, how much calories they should be eating [use of Change4life app]. (Christine, parent)

The influence of others on young people’s digital health practices

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62%

Competing and sometimes contradictory information can lead to anxiety about using digital health technologies

Young people reported a number of concerns about using digital technologies for health which might act as barriers to potential engagement. Survey findings indicated that nearly half (45%) of the respondents worried about ‘incorrect information’ about health. Other common concerns included ‘not knowing where information comes from’, ‘who has access to the information’ and ‘being able to understand the information’.

Some young people felt particularly anxious when looking up symptoms online and trying to navigate through a sea of information:

Also, the terror, I suppose, that can come around that. So, you know, I’ve got this rash, which means I’ve got cancer, which means I’m going to die tomorrow. So that kind of panic, I think, is pretty prevalent on the internet … Yeah, and I think that’s pretty common. I think there are a lot of amateurs who think that they know a lot more than they actually do, and they’re undoing all the work that the NHS is trying to do. (Andrew, 18, white British)

One of the key challenges for young people using digital health is navigating the extensive information and multiple knowledge forms.

Making sense of digital data and multiple messages

42% partcipants use digital technology to learn how to be healthier, look after themselves (34%) and how to be fitter (33%), but 45% worry about incorrect information.

62% of respondents are not checked for internet use and 72% report they can use any technology they have access to.

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Some young people described being given ‘guidance’ about what they might use. However, as reported in Figure 16, 61% of survey participants reported that they could ‘do what they like’ in terms of online access to digital health information. These concerns are also significant given over a third of the survey participants reported that they were also looking up health information for others.

Young people reported that schools taught them about the dangers of being online, but there were few opportunities to learn about digital

technologies and health. Davies (2017: 2766) suggests that although young people might find it ‘difficult to find and accurately evaluate information’, he cautions against attributing this to ‘a straightforward lack of skill or ability’. His research revealed how young people ‘may stop searching when they have their misapprehensions confirmed by new, apparently trustworthy information’. Similarly, young people are developing techniques to compare and evaluate health information in different ways.

Does anybody check up on your internet use?

Figure 16: Internet use checks, as reported by survey participants.

Figure 15: Desired technology reported by survey participants.

Is there any form of digital technology that you would like to use but don’t?

I pretty much can do what I want

Parent(s)

Family member(s)

Teacher(s)

Friend(s)

0 10 20 30 40 50 60 70

0 10 20 30 40 50 60 70

No, I use everything I want to use.

I would like my an ipad/tablet/laptop but we can’t afford one

I would like a fitness band but we can’t afford one

Other

I would like an ipad/tablet/laptop but I’m not allowed one

I would like a fitness band but I’m not allowed one

I would like a fitness band but find them difficult to use

I don’t use any digital tech and dont want to

I would like a mobile phone but I’m not allowed one

I would like a mobile phone but we can’t afford one

I would like a mobile phone but find them difficult to use

I would like my an ipad/tablet/laptop but find them difficult to use

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As they engage with multiple digital health platforms, young people are exposed to a mixture of medical, scientific, clinical, popular, (social) media, users and formal education which all contribute to different ‘knowledge’ about digital health. They reported seeking out information and advice about these ‘gaps’ with someone they trust.

Consistent with the findings of other studies (Third et al, 2017; Goodyear et al., 2019; Lupton, 2020a), adults were identified as important in providing support in three key ways:

1. manage the risks associated with the vast amount of health information available online in order to find safe and reliable information

2. helping them to interpret and make sense of data specifically about their own health behaviours

3. guiding young people towards particular media and technologies to help support their health needs.

Parents played an important role in helping young people make sense of health information online. For example, Heather described how her daughter, Olivia, often panicked after ‘googling’ symptoms and her role in helping Olivia:

Oh yeah, she’s even worse. So in a month, I think she’s diagnosed herself with bone cancer she’s had. She’s always convinced she’s got something. I think she enjoyed it, that one. She is quite obsessed with health, but I mean, she doesn’t do anything so she hasn’t got anything to think about really. So what she does think about and then she will then google it. So the other day her arms hurt so googled it and she said I’ve got bone cancer. Yeah, and then I’d be like, well do you know what, another cause of this is lack of vitamin D, which is probably more like it. Usually I just talk her round. (Heather, parent)

64% Participants would be most willing to share their health data with parents (64%). Interestingly, friends (33%) were reported almost as frequently as various healthcare specialists (36%, 32%) as a person to share data with.

Digital literacy and the importance of support of others

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However, even parents reported that they experienced difficulties with searching for information for themselves or their children and navigating the vast amounts of information available

Because I think it’s very easy to put in symptoms, you come up with a load of different things and someone has got a headache and they end up you thinking they’ve got a brain tumour. So I think that in particular and no matter what they do to an app they can’t get it right, not 100% of the time, they can’t. I just think there’s a tendency to think that digital can answer everything and I just don’t think it can. I think sometimes it’s just common sense and experience. So I do shy away from it sometimes, just because I think there’s so much emphasis on it that people do think that it is the be all and end all. And it’s not, it’s very good help but it isn’t everything. (June, parent)

In response to these issues, parents described feeling ill-equipped to support young people in the way that they would like.

Trust was an important element in how the participants evaluated the validity, accuracy and support offered by information sources. Similar to the experiences of young people in Australia (Lupton, 2020a), our participants discussed how important it was to them to be able to trust the information they found online, and how face-to-face interactions as part of established social networks with doctors, friends and family members were often the most trustworthy interactions.

I don’t really know. Sometimes I could talk to my parents about it as well. Sometimes I will talk to my parents and be, like, I don’t know if this is trustworthy, I don’t know if this is true. Does this actually happen? Or stuff like that. Because they are wiser. But I mean, like, sometimes I, kind of, use my own initiative. If it is just bias, if it is just their own opinion or if it is just, like, facts and truth a little bit … but most of the time I kind of, like, use my own initiative for stuff. (Tyler, 17, black British)

Some young people were also able to discuss digital health technologies with older siblings:

It depends what kind of health app it was. Like, if it was like a counting calories one for example and it cost money, then [my brother] would be like, “Why would you want this?”, and he would be, like, “You don’t need it”, and all this stuff, as big brothers do. (Anna, 15, Asian British)

Young people often find it difficult to differentiate between information, opinions and expertise. On the one hand, digital health platforms might make the health knowledge more accessible for young people. On the other hand, this also requires work

on their behalf in terms of looking for looking for signs of expertise as made knowable by particular ‘official’ of health (e.g. quantified health expert, fitness trainer etc).

According to the participants’ accounts, those deemed to have intimate knowledge of health were highly valued as a pre-eminent source of information: particularly those who had ‘professional’ training and expertise in health and fitness. Other important factors were the extent to which others were aware of the specific ‘personalised’ needs of the individual.

Some parents who took part in our research raised their concerns about their children’s digital health practices and the importance of exploring this with their children. For example, June describes her concerns about the reliability of Fitbit data:

Yes, I think it’s just you can’t believe everything. That doesn’t mean it’s bad, but it doesn’t mean it’s absolutely accurate. (June)

Other parents raised concerns about the potentially harmful effects of using tracking devices:

Getting obsessed with it, I suppose. because it’s always with you, isn’t it? You can always check up on it, can’t you or think, I’ll just do this. (Heather)

In navigating these digital health ecologies, one of the central concerns reported was ensuring they were finding ‘safe’ spaces and ‘trusted experts’ through which to learn about health. This also points towards the way in which digital health technologies are part of a complex systems of health made up of multiple actors and different knowledge about health. Digital tools were not perceived to replace health care but supplement it.

I think one of the problems, like, today with using technology to monitor health and that there’s no humanity aspect of it, it’s all computers and that. And I think health is such a personal thing and everyone’s different. And you can’t have a computer run an algorithm and figure out what this person should do, because it might be completely different to what someone else needs to do. (Maggie, 16, white South African)

Our research data points towards the importance of young people deferring to adults to help make sense of data and information found online

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Young people in our study describe turning to the significant adults in their lives, often those who held an intimate knowledge of their health, to help them to make sense of health data. One example of this was Bethany, who mentioned to one of our researchers that one morning she woke up and told her Mum, “I didn’t sleep very well”, but then her Fitbit had said to her, “No, you have actually slept well”. Natalie, Bethany’s mother, described how they had to work together to make sense of this:

Yeah, I think it made us both look at, sort of when you assume you’ve had a bad night, how bad that night really is and whether you can put today down to that. How you feel today, maybe you just need to pick yourself up a little bit more.

…. You kind of gauge it a lot of the time as well. I think with teenagers especially their expression says it all. They don’t necessarily look unwell or look pale or they are kind of a bit – you don’t mind me saying, do you Bethany, when you are tired – she just looks a bit miserable sometimes. And then to find out that you didn’t actually have a bad night, you can’t really have that excuse now. (Natalie, parent)

In cases like this, the sensing, feeling body can lead some young people to resist or distrust the quantification of their bodies. Tensions could emerge, for example, between an exercise app and the data generated about a physical activity and how it actually felt to be moving and running; perhaps of experiencing fatigue, stigma, danger as one goes on a run.

Some young people recounted how friends and family members had recommended websites, apps or wearable devices. They explained that they valued the embodied experience-based knowledges that these people could provide.

Some young people felt that they were not heard and that there was a lack of meaningful engagement with those who had a responsibility for them. Many of them suggested that schools should be encouraged to place greater emphasis of the role of the digital in shaping young people’s learning about health.

Recommendation: ■ Adults who have a responsibility for young

people’s health need support to develop digital literacy so as to better understand and support young people in their care in making sense of different health information.

■ Adults need support in developing their own digital literacy to better support young people in critically evaluating the diverse range of digital platforms, devices, apps and information available to them.

■ Whilst many young people had learned about media literacy at school, much more was needed in terms of helping them to understand complex digital environments as most young people are aware of the way in which media images are often manipulated/edited. In particular, young people described the need for a space to discuss, reflect, experience and discuss the health-related material they discover in digital environments.

The findings thus highlight the importance of adults’ digital literacy in supporting young people in their digital health use. Where young people do not have access to support networks, this can emerge as a form of inequality.

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While young people valued the convenience, accessibility, detail and diversity of information offered by digital media and devices, their accounts also highlighted concerns about navigating the volume of information and the importance of face-to-face as well as online relationships and personal connections with other people for providing information and support, including family members and friends as well as medical professionals.

It would be interesting to use [the Babylon app]. I would like to try it, however I kind of feel like talking to someone, like having a talk with actually

someone, would actually benefit me more. Whereas if I was to talk over an app or type over an app, things could get muddled up or I could just be like, it may not give me an accurate search. Whereas if I am talking to someone generally face-to-face, it might help more. (Tyler, black British)

I think also some young people can be embarrassed to go to the doctor about some things, so I think if it was on Facetime it might be easier, because I think face-to-face things when it’s in person, it can be quite awkward. (Olivia, 16 white British)

The importance of face to face contact

Young people as creative producers of digital health practices

Young people do not always use digital health technologies in straightforward or predictable ways but are active in shaping or constituting these technologies, and use them in ways that might suit particular needs. As such, it is not always possible to know in advance how young people use technology, and sometimes this might be counter to the intended design of that technology. A study by Davies and Eynon (2018) revealed young people’s creative and transgressive use of technology. Our research reveals how these practices are also present in their engagement with digital health technologies. The ‘health data practices’ of young people were sometimes unpredictable or resistant. Young people reconfigure data or categorisation of their health in ways which become meaningful to them and the cultures in which they live their everyday live.

In the focus group discussion, the participants described the emerging trend amongst their peers to use apps or online diagnosis tools to self-diagnose mental health problems. These practices of self-diagnosis were considered to be ‘performative’ within social contexts where mental ill-health was actually seen to be ‘trendy’:

I think self-diagnosis is like one of the worst things. And I, you know, count doing a test online: “Do i have psychosis?“, and it’s like ”Yes, you have schizophrenia“, or whatever. People like really get into that [self-diagnosis]. And I think personally that’s why, I don’t mean to offend anyone, but I haven’t met a girl my age who doesn’t claim to have depression or anxiety. And I’m sure it wasn’t

that way perhaps when you were my age [directed at interviewers]. Because I think, because of the internet, so many people can go on and do a little test and say ”Oh wow, I’ve got depression”. (Hugo, 14, white British)

One thing I think I should have mentioned a bit earlier is ... I don’t know if you guys are aware of it, but in the subculture that I’m into, like the musicians and all of the fashion and stuff ... It’s quite odd, but mental illness is, like, a cool thing to have. There’s this whole ‘sad boy’ subculture, and like, all these rappers who market their depression and stuff like Lil Tracy, and Lil Peep, who recently died. Yeah, people really make money off it. A lot of people want to be able to be, like, “Yeah, I’m in the sad boys club. Yeah, I’ve got depression”. So when they take these tests, they put these things in, because they want to get a result saying that they’re depressed so that they can kind of flaunt it – which is really weird. (Leif, 14, black Caribbean)

This example illustrates the way in which knowledge practices and processes were being produced by young people within and beyond formal spaces of learning (Fullagar et al., 2017). In this example, one boy from the focus group discussion describes the way in which pleasure and empowerment are associated with the ‘performance’ of emotional distress in certain social contexts (‘sad boy club’). The diagnostic tools available in mental health apps include biomedical ‘norms’ which give legitimacy to the claims that one might be experiencing mental ill-health.

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Young people identified the following concerns in relation to information about health online:

■ Incorrect information

■ Getting too much information

■ Being able to understand information

■ Not knowing where the information comes from

■ Who has access to information.

The survey results reported in Figure 17 suggest that most respondents were uncertain or ambivalent about whether adults should check up on the kind of information young people are accessing online.

Should adults check up on the kind of health information young people are accessing online?

Figure 17: Adult checking of young people’s access to health information.

Data sharing and owning: Security and safety

Some young people described learning about the difference between private and public settings in relation to social media.

When you’re like on Instagram and like public and private, like I went through a phase of putting it on public. Then I realised that loads of people may see my profile that I don’t really want them to see it. So then I changed it to private and now I’m on private because I kind of feel uncomfortable with people that I don’t really know looking at my like social media and stuff. (Anna, 15, Asian British)

Most young people were not familiar with third party or data security nor of its limitations. Young people are aware of commercial influence online, for example of social media advertising, but understanding of data security, privacy and ownership is very limited. Here again, there are strong similarities with Lupton’s (2020a) findings from her Australian study.

Mostly the participants did not make reference to privacy or security issues unless we asked them

directly. When they did discuss these issues, they demonstrated a limited understanding about where their personal health data went or how this might be used.

Doesn’t it [Fitbit] keep like a … I don’t know what it’s called but like it keeps like footsteps or something like that and it collects the information but I don’t really know what it does to it. (Anna, 15, Asian British)

When we explained third party use, few seemed concerned:

I don’t know, with this whole – you know how people are saying, “Be careful with your information” and stuff, as of recently because of what Mark Zuckerberg was up to. I don’t really care at all, I think, “What’s anyone really going to do with my information?”’ I think people are just getting a bit too excited about it, I don’t think they care about a 16-year-old girl who lives in the city and chills at home all day, you know? I’m probably not top of the radar. (Olivia, 16, white British)

0 10 20 30 40 50

Not sure

no, they shouldn’t

Maybe

Yes, definitely

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Health data was not seen as something to be concerned about in terms of security and privacy. Often, such issues were instead related to identity theft or financial theft:

I don’t think anyone’s really going to care if I tell them how many steps I’ve done in a day. No-one’s going to scam my credit cards because I’ve told them that ... it’s not very in detail, not your address or something really personal to you. If you put, like, me in a group of a hundred other people who put our addresses online that would be important to anyone and they would be able to identify me. But if you put me and a hundred other people’s daily steps they wouldn’t really know which one is me. (Luke, 16, white British)

These views also were expressed by some of the parents in our study:

No, not really, no risks. I mean it’s all data, it’s all been collected somewhere but I don’t think it’s data that someone’s going to fraudulently empty your bank account with or anything like that. I think it’s all quite limited. A lot of these sites don’t really want anything more than an email, I don’t think so. (Natalie, parent)

Parents were aware that young people were actively sharing information and media online, but did not have a clear understanding of privacy, security or safety issues online in relation to health.

They’ll share everything. But that’s partly because I think they’re used to it and partly I guess, because you’re young. (Heather, parent)

Do you know I’ve got absolutely no idea [what happens to health data] (Victoria, parent)

Some young people expressed doubts about what happened to information about them:

It [health data] could get like used and like shared around and stuff, so. I know it goes to like a data place, because when you’re starting that, you have to say I accept like all of my data to go somewhere. (Alice, 14, white British)

Some young people conveyed a sense of trust in these platforms, but had difficulty in explaining particular terms or understanding who it was that owned their data. They differently referred to data ownership as mine, shared or belonged to someone else.

I didn’t really mind that the app had my information (Bethany, 16, white British)

This unquestioned investment of trust raises concerns, given that young people reported frequently moving across different platforms and data might synced to other devices or platforms, sometimes without their knowledge. How data are used by companies was not always visible to users and remains a pressing issue for future engagement. Aware of these concerns, parents reported using different strategies to monitor what their child was doing online. Some put in place rules and restrictions about what apps or platforms their children could use. Others preferred to talk to their children to discuss and agree guidelines.

Predominantly, young people’s understanding about digital safety was derived from what they had learned in school about ‘e-safety’ and remained mostly focused on communications online and privacy issues:

I had endless PSHE lessons [at school] on updating your password …. internet safety and online abuse, that kind of thing. (Andrew, 18, white British)

We don’t really learn about digital health, you just learn about e-safety in general. And then it’s like in Year 10, everyone’s like, you know, “More e-safety?”’. You get it now. (Alice, 14, white British)

Recommendations: There is a clear need for parents and guardians to be supported in the development of their knowledge and skills for effectively supporting their children to understand issues of data owning, sharing, privacy and security related to the use of digital technologies for health-related purposes.

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Young people used a range of mechanisms to judge the validity of the health information they found online, including the number of likes, reading reviews of apps, and internet search results. The role of the NHS (UK National Health Service) was crucial in help them ascertain which sources of health information they could trust. Several participants described the NHS logo as important in judging or verifying trust.

I usually try to stick to the NHS because like that’s the one that I trust the most (Cassie, 15, white British)

Others indicated that if a result was top of the list of results in a search engine, then they judged it to be the most reliable source of information:

The top result has always got to be the answer [on google search]. Because it’s got – everyone’s going on it so I trust it. (Olivia, 16, white British)

The design and architecture of a platform were also identified as important factors:

If it’s, like, worded quite simple, you probably know it’s like not always trustworthy. And if it’s like formatted quite well, you know they’ve actually put time and effort into it, not just try and scam you. (Alice, 14, white British)

Others felt a digital platform was valid if it included scientific/medical language or research ‘evidence’:

I usually don’t believe what they say. You have to give factual evidence otherwise I don’t really believe it and so I usually won’t use that website again. (Bailey, 17, white British)

Online reviews of apps or comments included in Youtube were also used to help guide both parents and young people towards ‘reliable’ information and safe platforms:

I look at the comments really [on Youtube] and also, like if I’ve seen some people, if I’ve seen like a channel before which has been reliable then I know. (Liam, 17, Chinese British)

I wouldn’t say that I would trust everything, but if most of the stories are going the same sort of way and you feel then I would say that’s an average of, I’d give it an average of 90% or something out of ten then I’m pretty sure that is quite accurate. I’ll just judge it on if someone has made a comment or if someone has made a statement saying something, then I’ll look at that person’s profile and make sure who are they, are they someone who can be trusted to give that information. And then, if it’s somebody you can’t even find any real pictures of a face or anything like that, then I’ll just say that you just take it with a pinch of salt. I’ll just use common sense really to outweigh it and things. I don’t believe anything I read on the internet: if it just seems if something is too good to be true or whatever, I just dismiss it. (Jonathan, parent)

Another indication of a reliable form of health knowledge was if it was promoted via a large or recognised company:

It would be more things like that. I suppose websites that I knew maybe are more familiar with the company name or something that type of thing. (Victoria, parent)

Credibility and validity

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The promise and future of digital health

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Digital health care systems, industry and designers have a duty of care. In some cases, these technologies served as the first time or entry point into seeking help. For others, it may be the only source of seeking health information. Particularly with reference to mental health, many young people don’t access treatment at the time they need it or experience long waiting lists. Digital health technologies may therefore play an increasingly significant role in supporting young people.

In both our research and our engagement events, young people repeatedly expressed the importance of being included in the process of design and regulation of digital health technologies. They felt strongly that the digital health industry and the government should do more to consult with them on legislation. This related to their concerns about the growth in self-harming and pro-anorexia material, the impact of images of idealised and unrealistic ‘fit’ bodies circulating online and the increasing volumes of unsafe health information.

Young people identified a range of barriers which they felt limited their engagement and were not well understood by a range of stakeholders/industry.

When asked about the future of digital health design, young people described features of features of ease of use, diversity of information and affordability. The participants often imagined an app, website or device that could do everything in one place and meet their multiple health needs.

So it would cover all bases really, so nutrition, how to control stress and stuff as a young person, that’s something that I think a lot of people are affected by. Especially mental health as well because we get taught about that in school but it seems like

– that it’s got a stigma and stuff, especially as it’s – because there’s a big thing going around at the moment, lad culture and stuff and how you can’t come out and accept your flaws in front of other people. Because I think a lot of boys in my year who I’m friends with, I couldn’t talk to them about mental health and I’d want to find out how to open up a conversation and just admit that you’re flawed or whatever. I think that would benefit a lot of people who I know. Other than that, I think it would just be something that would affect – which would influence young people like sleep, how to balance your time effectively and maybe I think it would be more – a lot more mental than physical, I think. (Luke, 16, white British)

Young people as co-designers of digital health

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Affordability One of the key inequalities identified by both parents and young people was the affordability of digital health technologies:

Funnily enough, loads of people are like, “Oh my Mum’s got one of them”, and I was like “Oh”. I think because I’m poor, I’ve never heard of such a thing as a Fitbit. I just think why would someone spend £100 on a thing to tell them how fit they are? You know, I’m pretty working class, we don’t get this kind of stuff, the tech stuff. But all my other friends are like, “Oh yeah, Mum’s got that”. (Olivia, 16, white British)

Design/personalisation Young people emphasised the importance of the design of digital health technologies in affecting their initial uptake and also whether they would continue to use the particular device or platform. This included the importance of it being personalised to them:

Actually, yeah, I did like [the smartwatch]. I said it looks quite cool. I think the watch itself is a cool watch. It’s not just to tell the time, it’s developed and it’s developed for you. It’s not developed for everybody, it’s developed specifically for you. So yeah, I think it’s actually quite a cool feature. (Tyler, 17, black British)

The appearance and popularity of a device was important and could encourage or deter young people from using a particular technology:

People do want even a silly thing like an app to have a bit of a – yeah, something a bit trendy about it, bit catchy, eye catching. (Victoria, parent)

Ease of use/practical design Practical aspects of design, such as battery life, also restricted young people’s engagement. We found that inconsistent use of wearing the Fitbit band was not simply about individual choice, but restraints and barriers which prevented them from being able to wear it in certain situations.

Probably my main complaint is you have to have Bluetooth too, and Bluetooth drains my battery so fast. So I think it’s really good but it’s not something I check every day because usually I don’t, I never have Bluetooth on. But I think what [the Fitbit] could do though, is store all the data it has, then when you do turn Bluetooth on, put it in for the last few days if that makes sense? (Luke, 16, white British)

Capacity of mobile phone storage/device also influenced which apps young people decided to download. Luke revealed how he couldn’t download apps he wanted from the NHS apps library because of problems with his phone:

No well my phone is on the edge of storage anyway – it keeps crashing on me. And it was a time when I had all the sciences and maths [school work] in one week, so I just didn’t really get around to doing it. (Luke, 16, white British)

Other participants described situations where the technology failed or broke:

I do have a Fitbit, but it keeps breaking. (Bella, 15, white British)

Bethany described her frustrations using a barcode scanning app which she installed to give her information on foodstuffs she could purchase:

I had installed it a few days ago, just out of curiosity. And I can’t really remember why and I remember last time I installed it, every time I went to scan something it would be, sorry, we don’t have this food registered to our system yet, we don’t have this food. And I just felt, like, bit of a nightmare really and it was like, well what do you have access to? Everything I’m eating you don’t even have the information for! So I wanted to try it out this time and it did work better, but it was just a bit of hassle really or like every time I had anything to eat I had to check my phone and check how much and it wasn’t really something that I was interested in much. It was all quite basic – popular foods like chocolate bars and stuff that I wasn’t really surprised that they had on there. I think if it was more alternative, not very common foods, then I probably wouldn’t have had it on there. (Bethany, 16, white British)

Others found the activities involved in digital health technologies difficult to understand or to use. Tyler describes his experience of using the breathing feature of the Fitbit, which he assumed might help him relax:

I was quite disappointed with it, especially because of the fact that it was really uncomfortable. I didn’t find it comfortable, I felt like it was, I should be, I kept checking my Fitbit because I didn’t know what was going on. It didn’t give me a step through guide, it wasn’t walking me through it so I didn’t know what would happen. After a while, I kept looking and listening to it and it was 1 minute 45 through and I didn’t really have time to relax to it. Plus the constant vibrations on my wrist was just like, it was instead of me trying to relax my whole body, it was just kind of setting myself in the wrist so I couldn’t really relax myself. When I tried it again, I had to take the watch off instead of having it on, I took the watch off to listen to it and it still wasn’t really helpful. It was constant vibrations and it was just really uncomfortable and not really relaxing to listen to. (Tyler, 17, black British)

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During the Fitbit study, participants also reported frustrations and confusion over setting up the device:

Accuracy As the evidence above suggests, some young people were either not able to make sense of data or felt it was not accurate in capturing their physical activity levels (see also Goodyear et al 2019). For example, some devices might capture steps taken but not weight training exercise. Others reported differences in reported number of steps taken across two different tracking devices and therefore unsure of whether to trust the data.

Comfort The sensation and feel of wearing a device was an important reason why some people only used a device for a short time. For example, during our Fitbit study, participants described how uncomfortable it was wearing a the device overnight to track sleep. Furthermore, having to take a device on and off could be a source of frustration:

I don’t mind having a wearable device on, it’s just like the things I do in the day which means I just have to constantly take it on and off. Especially for exams as well, I had to keep taking it off. And there was times when I almost took it into the exams because I forgot it was there. (Liam, 17, Chinese British)

Recommendations ■ The needs of different stakeholders are crucial

to the future design of digital health (Lupton, 2017b). Digital technologies should support and enable young people as decision makers but not in ways which further shift the blame for health onto them.

■ The importance of developing spaces where young people’s voices can be heard points to the need for upstream engagement and co-design of digital health technologies.

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3. Impact, engagement and resources

“Leveraging the great work carried out by Dr Emma Rich and Dr Andy Miah is hugely valuable to the work we are doing at NHS Digital in terms of the Empower the Person initiative. Hearing directly from young people and the other esteemed speakers enables us to factor the insights in to our plans for health tech.” Hazel Jones, Programme Director, Apps and Wearables, NHS Digital.

From the project’s inception, the research team sought to provide multiple access points for public involvement and researcher collaboration. Central to this was the design of a digital infrastructure around the research, which involved a range of stakeholders, along with the production of events, which provided continual sharing of the research process, findings, and questions it generated. From these components, a number of resources were also created, which document the research findings.

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On digital

Our project website was the central space used for communicating our research, around which a number of other assets was created and/or utilised. Notably, our content is accessible through our profiles in Twitter, LinkedIn, Research Gate, YouTube, Slideshare, Zoom, and Prezi, each of which share content about the project’s findings and theoretical lens.

The Website: www.digitalhealthgeneration.net

The DHG website was designed for use by other academics, teachers, policy makers, health professionals, and young people and now hosts a range of resources that were produced throughout the project’s duration. It includes a summary of data findings, videos of presentations and talks, summaries of our project events and a blog which includes articles written by the project team and also guest writers (other academics, health professionals etc).

Further videos will be added to the resource which summarise our key findings and will be tailored to different stakeholders and as the research moves into a legacy period.

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Events

Over the project’s lifetime, we hosted, co-hosted, and produced a series of events designed to share the project’s development, engage a range of audiences and stakeholders, and work across national and international networks to enrich the project’s development.

Launch event

2017, November – Health 2.0 and Young People [Conference]A one-day symposium in Manchester focused on sharing existing knowledge on young people and digital health practices. Bringing together contemporary research-led insights, this event has helped us to establish future research agendas and identify pressing policy issues and challenges which we took forward to our National Policy Workshop at the house of commons.

Key Discussion Points

■ How can we involve young people continually on digital health provision?

■ How do we ensure adequate agility in digital healthcare given the rapid shift in platforms and technologies?

■ How do we avoid solutionism around digital health and accommodate different kinds of access/literacy among users?

Engagement and horizon scanning events

2018, January – Insights into the Digital Health Generation, Webinar with Global Net 21, January 2018This webinar covered some of the key early insights from the project. If you were not able to be there, you can watch it on the video.


■ Lack of awareness about ownership of data (third party access);

■ There are key issues to address regarding young people’s continuity of use of digital health – we describe this as digital health fatigue;

■ The potential loss of control over young people’s health data, some of which might be highly personal.

■ There is a need for better regulation of advertising of mobile health.

■ The preparedness of educators in helping young people remains a pressing concern;

■ There is a need for lifelong learning of digital health literacy;

■ We need a greater understanding of fake news about digital health and how this affects what young people are learning about health;

■ There is a loss of authoritative expertise due to expansion of digital information;

■ Excessive behavioural change around endless gamification of health;

■ There is need for freedom to export data from one platform to another.

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2018, March – The World of Mobile Health Apps: Transformations for the NHS [Webinar]Webinar with Global Net 21, March, 2018Co-produced with Global Net 21, This webinar discussed the latest mobile health applications in conversation with Hazel Jones, Programme Director – Apps and Wearables, NHS Digital.


■ Need to provide clinical underpinning to mobile health apps;

■ Establish regulatory structure around mobile health apps;

■ Develop a pipeline for developers who can converse with the healthcare industry;

■ Knowledge deficit among clinicians of latest technologies

■ Desire from users to trust platforms

■ How to ensure public dividend from private digital health insights

2018, April – Artificial Intelligence and Health Care [Webinar]Webinar with Global Net 21, Salford April, 2018 Co-produced with Global Net 21, As this webinar took place within part of a wider conference in this subject, the project team took part in a webinar about how young people regard the possibility of AI delivered healthcare, fusing an online and in person audience.


■ There is receptiveness among young people for artificial intelligence in healthcare

■ Concern that digital health services do not engage young people well enough

■ Need to explore intergenerationality in digital healthcare

■ Design of digital health interface needs radical rethink around objects that are imbued with caring roles

2018 June – Sheffield International Documentary Festival [Debate]As part of ShefDocFest, the DHG project took part in an event focused on the use of virtual reality in healthcare, involving some groundbreaking VR developers and film makers.


■ Virtual reality an emerging and experimental platform in digital health

■ There is a need to distinguish between different forms of immersive reality experiences

■ High technology refresh rate at the moment

■ Capacity to build empathy, understanding, and insights into illness are key

2019, June – Cheltenham Science Festival [Installation]Commissioned by Cheltenham, we brought a range of virtual reality health experiences to the festival and shared materials about our findings with visitors.

National policy workshop

2018, May – Health 2.0 & Young PeopleThis event took place at the House of Commons and was attended by a variety of stakeholders including some of the NHS digital team.


■ Need to find vehicle for ongoing involvement of young people in digital health

■ Concerns were identified that government is not at the cutting edge of technologies.

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Final event

This final event brought together experts from a variety of fields to collaborate and discuss the next stage of our research and what digital health needs most urgently.

At this national end of project event hosted in Bath, we had over 150 attendees including schoolchildren, health professionals, digital industry representatives, teachers, mental health workers and other professionals. We reported on the key findings of our research and discussed future issues and agendas.

Participants were also able to try some of the latest digital health technologies (games, virtual reality, mindfulness apps etc)

2019, March – Digital Health Generation National Conference, Bath

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With thanks to artist Laura Sorvala who captured the research and the event in the following illustration ‘Digital Health Generation 2019’):

At this event concerns raised about these systems were not just pertinent to individual interests: there are critical concerns about the way in which app data is distributed within proprietary systems, which can have an impact on how healthcare provision takes place.

Concerns about data ownership and exploitation is emerging as one of the most important issues facing the healthcare industry today, since an ability to harness data will dictate the limits of solutions in the future.

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Speakers at the event included:

Marta Swaby (Mental Health)

Andy Wilkins, Vision4health (Vision)

Knut Schroeder (Design)

Aislinn Bergin & Bethan Davies (Therapies)

Alan Taman (Inequalities)

Sally Powell, One Health Tech (Engaging communities)

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Young people talk about their experiences of digital health technologies at the DHG19 national conference. Panel members included: Hazel Jones, Huw Griffith, Huw Davies, Andy Wilkins (Vision4health)

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The collation of big data on particular groups/populations may come to have significant implications, particularly in terms of potential inequalities. There are questions about social inequities that arise in relation to how such data is utilized in the development of particular health promotion programmes, interventions, or funding plans.

Whilst digital health is celebrated for its ubiquitous potential, it is necessary also to be vigilant of the populations that are still absent from these environments and the inequalities and disparities this might exacerbate, as it increasingly integrated into health care. Insights from Livingstone and Helsper (2007) are instructive here, where they describe as ‘a continuum of digital inclusion’, particularly where access to mobile health is in its development

Stakeholders agreed there was a need to protect young people from harmful content, but that there was a need to not undermine young people. In the context of broader internet use, Livingstone and Haddon (2009) in their examination of research findings from 21 European members states into how

children and young people use the internet and new online technologies, recommend that protection and empowerment need to be carefully balanced.

There was an identified need to address gender differences in health concerns

Policy approaches must move beyond an assumed division between online and offline worlds.

The future of digital health is developing and innovating at a rapid speed. In recent years we have moved from mobile, to wearable and now ingestible digital health technologies. Any initiatives to develop digital literacy or initiatives should be continually evaluated. Digital health technologies, as they develop, will bring changing demands, opportunities and risks which need to be reviewed.

A mixture of imposed, co-regulation and self-regulation between various stakeholders will be necessary to address these complex environments.

As we move towards more biometric data, there are ethical issues about which institutions will hold this data (e.g. NHS).

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Presentations

Designing Healthcare for the Digital GenerationDigital Health and Well-Being Conference, Milton Keynes, Nov 2018.www.slideshare.net/andymiah/designing-healthcare-for-the-digital-generation

Making Digital Health SustainableImperial College London, June, 2018.www.slideshare.net/andymiah/making-digital-health-sustainable

The Digital Health Generation: Policy ConsiderationsThe House of Commons, May 2018www.slideshare.net/andymiah/the-digital-health-generation-digital-healthgen

Artificial Intelligence and Health: What does Generation Z expect?University of Salford, April, 2018www.slideshare.net/andymiah/artificial-intelligence-and-health-what-does-generation-z-expect

Where is Digital Health?Webinar, January, 2018www.slideshare.net/andymiah/where-is-digital-health

Designing Digital Health for the Entire Life CourseUniversity of Bath, June 2017.Awards In 2019 the study won the ‘research impact award’ at the Bristol and Bath Live health and care awards.

Awards

In 2019 the study won the ‘research impact award’ at the Bristol and Bath Live health and care awards.

Dr Dawn Harper, doctor, media personality and television presenter presents the Research Impact Award to the project team (Photo: Dr Sarah Lewis from the project team)

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Conclusions

Lost in a sea of health information

One of the biggest fears that young people expressed about digitally mediated health information was the risk of misinformation. They were concerned that misinformation could lead to panic and anxiety, that it could lead to young people to unwittingly engaging in dangerous practices. Regardless of their age, young people were concerned about the impact of misinformation on people younger than themselves, fearing that they may not have the capacity to differentiate between fact and fiction. In order to mediate concerns around misinformation, the young people we spoke to had developed their own methods of ascertaining if health information online could be trusted. Some key features they said they would look out for were: top level domains, website format and design, use of statistics, links to other sources and how the website is ranked when googling information.

The need for guidance

The cases described in this report point to the complexities of digital health and the need to avoid technological determinism: technology is neither inherently oppressive nor empowering. Many young people have experiences of digital which are both positive and problematic.

There needs to be a careful balance between empowering young people and directing them. Young people are developing their digital literacy through their everyday interactions and critical education should focus not only on technology but be conducted through technology. It is important that we don’t invoke polarised understandings. Young people are learning within and across different social sites simultaneously. Digital media should not be seen as separate from ‘offline’ structures, practices and social sites. These are embedded in young people’s everyday lives. Young people are learning about health through their everyday

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digital interactions, not always the direct result of deliberately searching for health information.

One of the main findings is that opportunities to learn about navigating digital health landscape are inadequate. These findings are particularly important given the trends identified in the research towards engagement with often inappropriate or harmful material online. Young people are frequently positioned as ‘digital natives’, a term that should be problematised, as proficiency in using digital technology does not equate to a comprehensive understanding of the consequences of digital technology use. The young people we spoke to were overwhelmingly in need of guidance when it came to using digital technology for health, they were unsure of what were the ‘right’ decisions to make and used technology with an overarching sense of uncertainty. They often stated that they were unsure as to where to turn for guidance. Parents and school were felt to be lacking the knowledge needed to engage with young people on issues surrounding digital health technology and personal health data privacy, as they were seen to be out of step with online communication, youth culture and the technologies themselves.

There are already numerous examples of body image and body confidence programmes in schools which are underpinned by efforts to enhance young people’s media literacy. However, our findings suggest that young people are already very aware that many media (including social media) images are fake, modified or photoshopped. However, this ‘rationalist’’ orientation is in tension with the embodied affective learning through which young people come to desire to develop bodies like those they see in these images.

Children and young people should be taught about data collection, security, ownership and third-party use. As they use digital health technologies, an increasing range of data is being gather about their use. Much of this data now includes personal data about their health practices. Tracking devices used by parents to keep a check on their child’s health may have implications for them. Young people become increasingly datafied. Furthermore, such data could be used in the future by health companies or health care systems to make judgements about insurance policies or health care access.

Our final recommendations are as follows:

■ There is a need for stronger digital health literacy to be delivered through schools

■ Ensure those who have a responsibility for young people (coaches, teachers, health professionals, parents etc) learn the digital skills and knowledge to help support young people navigate complex digital health environments

■ Where digital health literacy is taught in schools, we would recommend developing curricula which work with children, including the development and use of creative approaches where children can discuss and debate and draw on their own digital expertise. These could include arts- and design-based methods, including, for example, zine making, photo-elicitation, creative writing and drawing activities.

■ Provide more support families who lack digital literacy, including for both young people and their parents

■ Regulate social media in relation to potentially harmful images and posts

■ Social media and other related companies should make their data policy terms clearer and adopt a child friendly language.

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For enquiries please contact: Professor Emma Rich Department for Health University of Bath Bath BA2 7AY [email protected]

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