Digital Health Generation Project Findings
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A project funded by Wellcome Trust, led by University of Bath, University of Salford, and University of Canberra
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Digital Health Generation Project Findings
- 1. #DHG19 1
- 2. #DHG19 Digital Health Generation? #DHG19 Emma Rich, Sarah Lewis Andy Miah, Deborah Lupton, Lukasz Piwek The impact of ‘healthy lifestyle’ technologies on young people’s learning, identities, and health practices
- 3. #DHG19 Landscape of digital health and young people Formal institutions and organisations (e.g. schools, health organisations) encourage use of commercially based digital technologies and their associated data practices (Gard, 2014; Lupton, 2015). The ‘promise’ of digital health First generation to experience digital healthcare Not necessarily digitally native Risks of social media/sharing information Subjects of surveillance? Williamson, (2016) notes that digital data technologies play an increasingly prominent role in the collection, calculation and circulation of information about children. 3
- 4. #DHG19 4
- 5. #DHG19 How are we theorising digital health in our research? Devices are part of an arrangement of other things 5 What can digital health do? Questions of affect, inequality, opportunities, risk and potential for change, as part of the social life of digital data. Inseparability of body, device and data practices in context Digital health assemblage: An approach which enabled us to understand digital health practices – relationships between young people, health practices (e.g. physical activity) digital practices (e.g. self- tracking) and others (e.g. parent, doctor)
- 7. #DHG19 PHASE 1 1,019 people (11-18years) Survey assessment of digital health engagement Analysis - Dr Lukasz Piwek 7
- 8. #DHG19 PHASE 2 Interviews & focus groups (13-18yrs) 8 Understand how young people discover, select, adopt, share, employ, resist or reject digital health information/data. Examine the role of actors and agencies (official and commercial) in digital health engagement
- 9. #DHG19 PHASE 3 In-depth case studies, self-tracking families, 8wks 9 Real time data collection- Whatsapp Explore how social contexts shape digital health technology engagement and identify related inequalities and disparities of its use.
- 11. #DHG19 11 75% of young people owned their first mobile/tablet between 8-11 years old 55% use their mobile phone to learn about health 52% use apps to track diet, fitness and/or health 70% of participants overall reporting the use of technology for health.
- 12. #DHG19 The Influence of social Media Favourite social media application for health?
- 14. #DHG19 Source of anxiety and pressure for young people
- 15. #DHG19 Engagement with inappropriate content eg. unrealistic nature of images. Some are actively engaged with and influenced by images and hashtags e.g. #fitspiration Negative relationships with food/body/self Development of obsessive habits and body disaffection.
- 16. #DHG19 16
- 17. #DHG19 17 YouTube is the top site to help them understand health better (44%) The importance of connecting with ‘relatable’ others / People experiencing similar things The ‘trajectories’ of digital health engagement Followers, likes, watch history/cookies, suggesting links and adverts shape what young people ‘find’ Peer influence is significant in terms of recommendations of who or what to follow online (e.g. YouTube) and likes/follows
- 19. #DHG19 Self-Tracking techno-solutionist (Lupton, 2014: 706) approach Health and wellness apps and devices - critical mass in the digital health landscape they are not subject to the same forms of regulation (Powell, Landman, & Bates, 2014) new opportunities to measure, 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 19
- 20. #DHG19 Self-Tracking Opportunities for new learning / knowledge Self knowledge - Shapes how young people think about themselves and their bodies in significant ways motivate themselves to achieve goals or aspirations. Apps and wearable devices used for mental health and wellbeing, self-tracking sleep, heart rate, steps and other physical activities, weight loss, and menstrual cycles. The users of wearable devices and apps- opportunity to monitor bodily functions and activities and generate a lot of data and detail Convenience, immediacy and multiple knowledge Can lead to changes in health practices but engagement can often be short term 20
- 21. #DHG19 Negative Digital Health Practices Tracking can lead to anxiety Orientations reflect worrying tendencies for young people to approach work on the body as a ‘boundaryless project’ Petherick, 2015, p.363; Evans et al, 2008. “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”. Male/14/White 21
- 22. #DHG19 ““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’,.... 22
- 23. #DHG19 “...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 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.” Male/13/White European 23
- 24. #DHG19 “I: “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” ER: “With the food side?” I: “yeah” ER: “So who made the decision to delete that?” I: “ It was me and my sister” Unhealthy surveillance of young people’s bodies? For example, the sort of self-monitoring and connections between this and disordered eating and over exercising (Evans et al, 2005; Evans et al, 2008). 24
- 25. #DHG19 The labour and burden of digital health
- 26. #DHG19 FitBit Phase Manual and emotional labour that goes into tracking (data logging, manual input) Ambivalence and apathy 26
- 27. #DHG19 “Int: And which did you find the most helpful? OLIVIA: Sleeping. 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. Int: So that wasn’t something that you’d want to do? 27
- 28. #DHG19 Data, Data...and more Data Multiple knowledge - How they come to ’know’ their body (numbers, visualisations, through their bodies/senses)
- 29. #DHG19 Between Data and Bodily Experience MAKING SENSE OF DATA AND DIGITAL HEALTH INFORMATION
- 30. #DHG19 Relationality and data sense- making ● How do young people make sense of being measured and the data they generate (e.g. sleep, physical activity)? ● What happens to data we produce? Interpret but also intersects, escapes, (re)produced ● Data is ‘made sense’ of/interpreted compared against ‘other’ knowledge (e.g. body knowledge) Not neutral or obvious ● Tensions arise – biomedical knowledge which defines the body as knowable through quantification / measurement meets embodied knowledge ● Mixture of sources all contribute to different ‘knowledge’ about digital health eg. medical, scientific, clinical, popular, (social) media, users, formal education) ● Seeking out information and advice about these ‘gaps’ - The role of someone they ‘trust’ – E.g. family or doctor 30
- 32. #DHG19 Family influence Multiple knowledge - How they come to ’know’ their body (numbers, visualisations, through their bodies/senses)
- 33. #DHG19 “Int: I messaged Bethany earlier and asked if she wouldn’t mind if I mention this but when we were WhatsApping, she was saying that she said to you “I didn’t sleep very well” and then her Fitbit had said to her, no you have actually slept well. NATALIE: 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. 33
- 34. #DHG19 “…. You kind of gage 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. 34
- 35. #DHG19 “I: “All my family have one [fitbits], so it’s like a bit of a competition who can do the most steps” SL: “Haha, is that what happens?” I: “yeah” SL: “so what, do you all talk about it at the end of the day?” I: “Yeah like, on the app for fitbits theres a leaderboard” SL: “ahh, so you’re in a group together?” I: “yeah” 35
- 36. #DHG19 “SL: “so do you talk about it at the end of the evening, does someone say ‘ohh’” I: “yeah, usually my dad” SL: “ Oh right, is he the more active one?” I: “no, not really, he just like tries to do like 10,000 steps a day” SL : “ahh, so if he often quite pleased with himself? Does he get to the top of the leaderboard a lot?” I: “No, I normally beat him because of football but he plays [sport] but he can’t wear it for that, but he doesn’t run that much, so..” 36
- 37. #DHG19 “ ER: Does anyone encourage you to use any apps? I: “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”. ER: “So has that worked? Did that then encourage you to download some of those apps?” I: “yeah because we’re quite competitive when it comes to sport, so we’d want to see who can go the furthest you know” ER: “So do you start comparing data?” I: “Yeah, because they’re like side-by-side, I don’t remember what the app is called, I dont have it anymore” 37
- 38. #DHG19 “ER: “Was it Strava?” I: “Yeah!!” ER: “Do you literally sort of look at your phones and say..” I: “Yeah, we’ll look at that and he’ll be like ‘how did you find this week of cycling’ and then he’ll be like ‘do you want to do more or less next week?’ and I’ll fit that round my clubs and stuff, but we like cycling” ER: “ That sounds quite helpful in a way, that you actually sit down, would you then scale back if you found it too tiring?” I: “Yeah, just skip a day or two” 38
- 39. #DHG19 Unpredictable digital health practice The influence of peers
- 40. #DHG19 “ “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 havent met a girl my age how 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 ER and SL], 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’. Male/14/Mixed race Digital health assemblage – possibilities for change, resistance or alternative ways of thinking about use of digital tech (Haraway, 2008; Fullagar et al, 2017; Barad, 2014) 40
- 41. #DHG19 “The affective relationality between data, user and body is complex. These data are not neutral, nor do they tell a sanitised, truthful authentic story of the self. Instead, subjects utilise data to ‘generate stories for and about the body/self’” (Smith and Vontheth, 2017: 15) 41
- 42. #DHG19 Health Professionals AI aspect of DH for some in terms of anonymity/embarrassment perspective (Babylon app) “I don’t know, the fact that you… It sounds faster, also especially in the first part it would feel like you weren’t talking to another person, so if it was an issue that could cause embarrassment, you could talk quite freely.” Female/17/Mixed Race 42 Still a need for face to face contact/concerns about technology replacing “ Yeah, I don’t know, I think I would first just go in in person, if you’re worried about something it gives you that piece of mind, you know, a professional can tell you, you’re fine.” Female/18/White European
- 44. #DHG19 Too many apps and decision making Credibility and reliability 44 Minimal ‘guidance’ about use: 61% reported they ‘do what they like’ in terms of online access to digital health information When using the internet for health, 45% reported they worried about incorrect information 62% of respondents are not checked for internet use
- 45. #DHG19 Data sharing and owning ● Limited understanding of ○ regulation, confidentiality and anonymity ○ The social life of data ○ Data ownership
- 46. #DHG19 Credibility & Reliability ● Mechanisms to judge reliability vary, from number of likes, reviews, if it is ‘high’ on search returns ● NHS - endorsement gives credibility ● Awareness of commercial influence online is very limited
- 47. #DHG19 47
- 48. #DHG19 The importance of others and ‘recognized’ expertise/help from others to guide them through the recommended apps
- 49. #DHG19 Policy Implications ● Young people are not necessarily digital natives ● There is a need for continuous, upstream engagement ● Planned obsolescence in tech industry ● The future role of artificial intelligence ● How can data acquisition contribute to a wider public good? ● How can schools be empowered to promote digital health literacy
- 50. #DHG19 Questions for you ● What are the opportunities and risks associated with digital health solutions targeting young people? ● Will we reach a point where the accumulation of physical activity becomes an outcome of education, health care, GPs in such a way that we reward professions on this basis? ● What are the concerns about monitoring young people’s health through digital tracking?
- 51. #DHG19 51 Thanks!@DrEmmaRich & @DrSarahCLewis @AndyMiah Follow: @DigiHealthGen http://digitalhealthgeneration.net http://www.jiscmail.ac.uk/digitalhealthgeneration
Notas do Editor
- Thanks to Wellcome – all here – 2 year project - Pervasiveness of digi tech Little evidence of impact Growing awareness of the pervaseiveness of digital technologies in young peoples live and more recently, of the media and devices that young people are using to find out information and seek support for a whole range of health related issues - health and illness, physical fitness and wellbeing. Little evidence about what young people are using or how this impacts their health practices. Such evidence important for future design – opportunity to have conversations today Harms and limitations Particular assumptions about who technology is for (e.g. that social media is for young people, tracking data and the ‘quantified self’ movement is for 30 somethings) Different across parents and young people. The pervasiveness of digital technologies in young people’s lives is widely acknowledged, yet there is little evidence-based understanding of the impacts of what we call digital tech for health on young people. Parents – Significance Feel compelled to understand what the future might be like for current generations growing up What is it like to group up wuth and through these these digital health worlds Increasingly using digi in health care – GPs, etc. I recently attended a quality of life conference – one of the common things we are hearing is that there is little available information about how patients view data, or its relevance to their lives. Given the range of technologies includes websites, online discussion forums, social media, content- sharing platforms, mobile apps and wearable devices are now available as a means for young people to learn about and promote their health, physical fitness and wellbeing”
- Promise - Manage risks in relation to particular ideas about what types of citizens we should be. Burdens on individuals Increase burden to monitor themselves and demonstrate their worth through their health promote a neoliberal moral imperative towards continual self-improvement as a matter of individual responsibility. They promote ideas about the ideal citizen as an autonomous, responsible and controlled Pedagogical tools – educational tools – to learn about themselves. Certainly increased opportunities to share information, track and monitor and learn more about their bodies and health, and seek out support. Promise of digital health – strong attachment to our practices and devices – but - Assumptions about bodies, time and measurement The digitally engaged self learns the various techniques to manage and reduce the ‘risks’ related to the body (exercise, diet, sleep) in the pursuit of particular notions of personhood derived from the concept of the digitally engaged patient (Lupton, 2013). A number of authors describe how the body becomes knowable as an object of quantified knowledge, reflecting a ‘techo-utopian’ view of the body (Lupton, 2014). Increasingly, digital health technologies such as these promise the means through which to achieve ‘self betterment’ or ‘self-optimization’ (Ruckenstein, 2014, p.69). Digital natives – subject to critique – Digital inclusion – Not necessary literature by virtue of being born in the digital age. Importance of examining the nuances, inequalities and differences. Certainly evident across our research.
- Gamification (Whitson, 2012) – Much excitement about the ptoentail for this –exergaming – Zombies run - Zombies, Run! - Missions, run through towna and collect items became the highest-grossing Health & Fitness app on Apple's App Store within two weeks of its initial release, Immersive storyline - running more fun Monitor young people Gender Moral underpinnings - think about terms - blame, guilt, good bad foods. and has drawn pr aise for the way its immersive storyline makes running more fun and academic attention for its genre and mHealth applications.” Healthism and self-responsibility (Fotopoulou & O’Riordan, 2017; Lupton, 2017, 2018; Rich, 2018; Miah and Rich, 2017) Mobile exer game Digital technologies are part of a broad array of resources designed to encourage parents and children to gather and use information to monitor and regulate various aspects of health (e.g. weight) through everyday ‘leisure’ practices. WIKI: “Set around Abel Township, a small outpost trying to survive the zombie apocalypse, players act as the character "Runner 5" through a series of missions during which they run, collect items to help the town survive and listen to various audio narrations to uncover mysteries. For example, in 2014 a fitness band designed for children aged as young as four was launched, a technology through which children and parents can monitor a child’s physical activity (See Rich, 2017). More recently, a range of fitness-trackers designed specifically for children have emerged in commercial marketplace . Oh boy. And some of my dog friends are doing this too. With their dogs!!! https://www.fitbark.com “Several scholarly analyses of digital health technologies have identified the moral underpinnings of healthism and self-responsibility that tend to pervade digital media such as health and fitness apps, wearable devices, digital exercise games and exercise platforms (Fotopoulou & O’Riordan, 2017; Lupton, 2017, 2018; Millington, 2014; Rich, 2018). Yet other research has pointed to the ways in which digital media such as online discussion forums and social media groups can offer valuable opportunities for lay people to share information and provide support to each other (Benetoli, Chen, & Aslani, 2017; Gonzalez-Polledo & Tarr, 2016; Ziebland & Wyke, 2012) . Older digital technologies such as search engines and health information websites continue to be important sources of information about health, illness and healthcare that can help people understand their bodies better and make decisions about what kinds of care or health-promoting activities they should seek (Lupton, 2017). According to the website analytics platform eBizMBA, the top-most accessed health website was WebMD, with 80 million estimated unique monthly visitors (eBizMBA, 2018).”
- contextualising their enactments of digital health in their broader sociocultural environment (including their face-to-face encounters with other people Device - restaurant digital technologies relate to the design features of these technologies and what they potentially allow people to do with them….. Certain ‘logics’ circulate about digital health Not contained to a particular app or Tech practices come to define health in different ways So, we wanted to better understand this – not just study a particular device or app – think about how this comes together… app, decision to use an app, online discussion, team of data experts, interpretation of that data shaped by what their family or friends might be using/saying about data. 10,000 steps Different networks of relations between people and things - e.g. platforms, some are visible within the device and some beyond Not about individual psych/motivation for self-reporting or tracking nor particular tech/data but how these come together and produce a relationality which leads to particular affordance or capacities – such an enhancing wellbeing or a sense of self or change in the concept being measured The social life of data Young peoples ‘digital health practices’ take place in assemblagses Influence of different organisations/institutions, the material aspect of technology, culture/communities influence the production of different kinds of data There are a range of approaches one might take to studying the experience of young people’s digital health experiences. For example, one might undertake a netnography, utilising ethnographic research online to examine the interactions of young people in digital environments, such as conversations around physical activity. Alternatively, one could capture and analyse social media data, such as health related tweets (Bruns and Liang, 2012) and hashtags e.g. fitspiration or runtastic using a social media data collection and analytics suite for social sciences (e.g. Chorus). Given the abundance of health apps available, researchers might also want to understand factors influence young people’s choice or consumptions habits to identify whether there are indicators of which apps are used by young people. To do so, one could conduct a content analysis of reviewer comments (Money et al, 2011) on mobile apps. In our case, the research focused on developing a novel technique to understanding assemblages of digital health. Our research asks what digital can do, focusing on questions of affect, inequality, opportunities, risk and potential for change as part of the social life of digital data. Such questions which might bring about novel and detailed understandings of the risks and opportunities of digital health technologies in advancing young people’s health.
- What young people were using, key milestones, concerns about digital health technologies FIGURES ON CHRONIC ILLNESS – DISABILITY In depth ‘case studies’ with families. Mobile based research with 7 families Explore how social contexts shape digital health technology engagement and identify related inequalities and disparities of its use
- Understand how young people discover, select, adopt, share, employ, resist or reject digital health information. Examine how actors and agencies (official and commercial) guide and push young people towards digital health 37 interviews Focus group
- Young people 7 2 girls 5 boys 16-18 Pre ‘fitbit’ interviews x 7 parents Pre ‘fitbit’ interviews x 7 young people (45mins - 1hour) Post ‘fitbit’ interviews x 7 parents (45min +) Post fitbit interviews x 7 young people (45mins +) 8 weeks of fitbit use and whatsapp interaction / data Participants were invited to use Whatsapp as a platform for sharing their experiences with the research team. This mechanism provided a novel means through which it was possible to map their engagement with digital health technologies, 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 schizomatic / micro-sociological mapping of the materiality of their digital lives. Participants were also prompted to engage with specific examples of their data and consider what they did after they accessed that data. 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. For example, XXXX. These digital diaries provided the means through which we could document the participant’s experiences, as they happen Phase 3 – Connect with this idea of data ‘arrangement’ family is part of this arrangement we comes to influence the digital practices of young people
- Health conscious - worried well? These are figures which are potentially bring opportunities for health care but also are a potential point of concern when we look at what young people are using and how they use it – risks 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 wesbites, social media, Young people using these devices for a whole range of health issues – mental health, menstruation, weight, physical activity etc. Multiple knowledge - How they come to ’know’ their body (numbers, visualisations, through their bodies/senses)
- Young peopel talked abotu their experiences of engaging with ‘photo activity’, Body concerns, disaffection with body or unhealthy dietary practices concern since such practices are associated with body image disorders in girls (Meier & Gray, 2014). Fitspiration - metatag - user generated material - Perfection, fit healty strong bodys - virtuous, empowered, hard work - inspirational quotes . and clean eating. Perfect fit images. promote a neoliberal moral imperative towards continual self-improvement as a matter of individual responsibility. They promote ideas about the ideal citizen as an autonomous, responsible and controlled Thinspiration “Fitspiration is often used as a hashtag within social media ⎯a metadata tag which is attached to user generated material making it possible for others to find content within that specific theme. This ‘theme’ is now a popular trend that promotes ‘healthy’ eating and exercise within a global philosophy of strength and empowerment. Here ‘perfection’ is framed by images of ‘fit’, ‘healthy’ and ‘strong’ bodies implied to be virtuous, empowered and attained through hard work and ‘clean living’ (Tiggemann & Zaccardo, 2016). It is considered the healthy alternative to ‘thinspiration’, where the thin ‘ideal’ and weight loss are promoted through dangerous behaviors that characterize eating disorders” “Findings reveal a strong focus on appearance, including images of thin and toned female bodies, the sexual objectification of women’s bodies and the promotion of exercise for appearance motives. There are also ‘inspirational’ quotes or slogans advocating personal effort, challenge and empowerment, which can heighten undertones of moral superiority (Hodler & Lucas-Carr, 2015). These quotes or slogans are constituted through discourses of healthism (Crawford, 1980) which promote a neoliberal moral imperative towards continual self-improvement as a matter of individual responsibility. They promote ideas about the ideal citizen as an autonomous, responsible and controlled” Some young people report that they engaged with obsessive/addictive digital health practices – related to tracking technologies and social media Excessively monitoring diets / exercise Body dissatisfaction extreme diets and/or exercises, and experienced heightened levels of body dissatisfaction as a result of accessing material from social media and healthy lifestyle technologies Wider social impact of life online: MacIsaac, Kelly and Gray (2017) – based on a year long study located within a Scottish secondary school, online presentation and the development of a celebrity-esque culture within social media, had a significant effect on the way pupils behaved and viewed themselves within Physical Education classes Sites for learning about health Inappropriate and unregulated material accessed Source of anxiety and pressure for young people Think of the wider cultures which might influence how patients or users then engage with self-tracking and self reporting Infused with moralized messages – High levels of body disaffection amongst young people Intensification of norms and body ideals. Places the burden of responsibility on young people Unregulated health information The participants also appreciated being able to view videos on YouTube featuring people who were going through similar experiences. Fitspiration / thinspiration
- Desire to feel that they are not experiencing a problem on their own (how they are feeling, health concern, illness) – often led to decision to going online and seeking out connections and support. Youtbue – often influential because of ‘confessional’ and personalised. Young people. Advice and support – e.g. depression, weight training, Connected to others they could relate to . Sharing of experiences – popular source of stories and other visual.
- Phone collecting data on us in the background! However, also saw examples of more harmful practices Digital Health Assemblages Change
- Tracking is not a simple practice of neitural gaining a better knowledge of bodies, illness and healthcare The affordance of new knowledge – opportunity to learn new things
- The affective forces driving the regular use self-tracking apps and wearable devices were motivation and feeling of achievement engendered by setting and reaching goals. Inequalities around who has the access/resources - this is not simply a matter of motivation! Some argue a form of governance ●Tracking places a part in the development of certain forms of anxiety ●Need to compete to demonstrate changes in that which is being measure – Comptition (young people share a lot of what they do online anyway) ●Series of micropractices which are infused with moral values ●Unhealth forms of self-monitoring and surveillance – worrying tendencies ● ●As (Fotopoulou & O’Riordan, 2016, p. 54) observe ‘users are offered training in self-care through wearable technologies through a series of micropractices that involve processes of mediation and sharing their own data via social networking’. These can be considered pedagogical enactments of what (Rice, 2015; 387) describes as ‘conventional biopedagogical interventions that conflate moral with medical values in teaching what bodies should be’ . Furthermore, self-responsibility for health, neoliberal forms of governance (Fitzpatrick and Tinning, 2014).
- Anxieties about body Additional labour
- Need to be careful that these devices are not used in ways which might shift our understandings of health from ‘normal’ to in some ways ‘pathological’ – this can lead to reparative or negative practices The unhealthy surveillance of young people’s bodies, for example the sort of self-monitoring and connections between ths and disordered eating and over exercising (Evans et al, 2005; Evans et al, 2008). What space for young people (Or others) to articulate these concerns - how difficult to refuse when these are framed within preventative health care as ‘health enhancing’ . orientations reflect worrying tendencies for young people to approach work on the body as a ‘boundaryless project’ (Petherick, 2015, p.363; Evans et al, 2008). Digitally constituted through processes of quantification, surveillance and the sharing of personalised data.
- Emotional labour and effort that goes into tracking Whether this is a ‘burden’ is also shaped by their wider expecttions of what tech should do – It’s capacity - Has digi health kept pace? Emotional labour and effort that goes into tracking Whether this is a ‘burden’ is also shaped by their wider expecttions of what tech should do – It’s capacity - Has digi health kept pace? Affect Process by which biomedical models of health – might seep into our everyday life. Dissonance
- Includes emotional labour These burdens challenge the idea that self-tracking is easy and simple Ambivalence and apathy - While these participants enjoyed the benefits of being able to monitor their bodies with apps or wearable devices, there was a sense of apathy .. but also a sense of it being hard work the researchers also identified a sense of ambivalence in many of their participants, centring on not wanting to ‘miss out’ on the benefits of these technologies but also not finding much value in using them.
- Inputting and logging Cost of device and what it should do
- Data is produced through things we do … Deliberately tracking or in the backgroung we accumulate this, movement from the data and transformed into different visualized form (e.g. graphs) It then has to be interpreted – How then does this align with a persons life… lived experience Assumption is measuring is neutral – as if we are accessing and measuring something already taking place –
- Patient reported measurements and real time - – Differences reported by data might not feel significant to patient or user walking slower might be the result of pain or something which a sensor cannot detect
- How to make sense of the complex data they are brought into contact with Understandings of health Digital health tech includes advice – How are these deemed to be reliable? Safe? Competing meanings about health Feeling - sensory experiene - somethng not right - seek out information Initial bodily sensory experiences and observations, a feeling that something was not quite right, impelled the participants to seek out information or advice. Trust was an important element in how the participants evaluated the validity, accuracy and support offered by information sources. The 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. The relational connections they had established with these other people were central to trust.
- Who is important in terms of discussions about making sense of data? Importance of face-to-face encounters was evident in the participants’ accounts. Part of the value of these encounters Value - relational connections established with others in their live, but also intimate knowledge to help guide them the participants and other people in their lives, including medical professionals, friends and family members. One of the key values expressed by the young people was the role played by the intimate knowledge of their health held by their parents or regular doctor, developed through their regular in-person interactions over time. This is who they wouldn’t mind accessing their data, not who they actually share it with. Majority of phase 3 participants didn’t discuss their data at length with people. Instances mentioned were friends asking how many steps they’d done, usually this was seen as a conversation starter or a bit of small talk. Parents of phase 3 teens seemed to take little interest in the fitbit, although some did try it on to see what their heart rate is, none of the parents said they had accessed, or asked to access the data on the fitbit, any interest they had in tracking was with the device itself. This contrasts with phase 2 where we saw teens sharing data with their families in the form of leader boards and being competitive about sport, as well as teens without fitbits being interested in their friends data, and this adding to their desire to start tracking themselves. Opportunities here – But this also raises questions about how health care approaches inequalities of digital health
- Debate yesterday – Talied about need to calibrate data with patient perceptions – Differences reported by data might not feel significant to patient or user Yesterday – walking slower might be the result of pain or something which a sensor cannot detect
- Whats made meangingul – either in terms of engaging with tracking or making sense of data – was influence by family practices. 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.
- Calibrating data with patient perceptions
- Whats made meangingul – either in terms of engaging with tracking or making sense of data – was influence by family practices. 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.
- A good example of how data practices – how we use and work with data - Active, resistant and sometimes unexpected practices These can be different to the intended purpose of the app design. People recongifure data and what it means in the context of their broader lives and stories they tell We can’t always know how digi health will be used by yopung people Bear in mind that they can be assembled in ways which might have a negative impact of quality of life measures – We can see how this assemblage is made – we see youth cultures, mental health discourses and digital tech practices come together in ways which can be potentially harmful. We can’t always know these in advance? As professionals and practitioners how do we prepare for this? Midnful that when used in clinical settings can meet with wider external influences
- A good example of how data practices – how we use and work with data - Active, resistant and sometimes unexpected practices These can be different to the intended purpose of the app design. People recongifure data and what it means in the context of their broader lives and stories they tell Bear in mind that they can be assembled in ways which might have a negative impact of quality of life measures – We can see how this assemblage is made – we see youth cultures, mental health discourses and digital tech practices come together in ways which can be potentially harmful. We can’t always know these in advance? As professionals and practitioners how do we prepare for this? Midnful that when used in clinical settings can meet with wider external influences
- In these relationalities further disjunctures might therefore emerge, whereby ‘the signals and sensations of the embodied sensorium’ (Smith and Vonthethof, 2017) might be at odds with the ‘truth’ of data driven knowledge. Could the sensing feeling body lead some to resist distrust the quantification of their bodies. Tensions could emerge for example between an exercise app and affective show it actually felt to be moving and running, of experiencing fatigue, stigma, danger. Engaging with these relationalities reflects the feminist poststructuralist bioethics advanced by Shildrick (2005) who focuses on a situated embodied ethics and gives recognition to people’s experiential knowledge. to address the ‘disjuncture’. There is a mutuality, relationality, entanglement as someone becomes, fat, thin, overweight, at risk, sleep deficient, physically active (are they meeting targets of suggested exercise regimes?) Quantification and coding of data about their bodies are entangled with sensorial knowledges in ways that co-produce particular practices ?
- Short termism – Young people change apps and wearables quickly
- Mostly the participants did not make reference to privacy or security issues unless we asked them directly. Limited understanding about where the personal health data went or how this might be used, and when explained thirs party use, few seemed concerned. Tehre was a sense of trust in using these platforms – secutiy and privacy. Difficulty explaining these terms or understanding who might own their data – me, joint, or is theirs? The movement of data across different platforms Fitbit tracking – might be developed as part of a weight loss progamme. Synching of data to other devices and platforms Mine, our data, their data How data is used by companies or others now always visible to the user
- Aware of adverts Not – data mining of everyday lives by social media
- Architecture and design of sites
- According to the participants’ accounts, doctors offered different affordances from online sources. They were highly valued as the pre-eminent source of health information authority because of their training and expertise. Young people noted that it could be difficult to distinguish between different opinions and details about health and illness expressed online, requiring them to assess which sources were most valid and reliable. By comparison, a doctor’s expertise was individualised to patients’ specific needs and they could offer knowledgeable interpretations based on their training. Young people could then defer to this expertise. Reassure each other to guide through the process – Need for help with uncertainy / confusion - what is accurate information Swap ideas