[WEBINAR] on Digital Health with @DigiHealthGen

This evening I joined a webinar on ‘Digital Health’ from a Wellcome funded project. Here are my rough notes from the session:  

• Young people are Uusing the internet to check out symptoms, working out what can/can’t do, rather than going to the GP.
• Wellcome Trust project – just starting – re digital health generation. Emma Rich (sociology/education) and Andy Miah (currently in Korea doing stuff with the Olympics). Also Deborah Lupton – self tracking, quantification related to health, etc.
• Students, teachers and families are the source of data collection
• How are young people engaging with digital? Healthy citizenship, etc
• How digital is shaping how we learn about tech and shape health practices.
• Digital health – expansive area – instagram accounts re calories, etc. What are people doing, and what role can it be?

• Health services can propose certain services that people can use, but people can use whatever platform they are going to use – going to use Whatsapp for data collection… not pulling people out of their habitus (less artificial)
• Mobile is driving activity across all levels – can see this as Olympics, Samsung – collecting data, power walls, etc. already happening in some gyms, etc.

• What data are people comfortable collecting, and what data are they comfortable sharing amongst themselves? Can create degrees of anxiety if not physically active… [Sounds like fitness evangelism….] Intimately connected to mobile devices.
• This project is particularly interested in ‘healthy lifestyle’ technologies, rather than medical tools that e.g. track glucose … Exponential growth – difficult to navigate the range – 165k+
• Health knowledge being produced via digital media, can also produce own health data about themselves – where does that go, decisions about future healthcare/ insurance, etc. What impact does that have on self-identity, health behaviours, etc.

• Project came as a result of concerns about the growth of health technology, and how affecting young people’s health, etc. Data from local schools, what age, what technology, what media do they find most helpful, etc. 8-11 year old owning first digital device, though access before that…

 

• Now into 2^nd phase, going into 3^rd phase, going into more in-depth work, ethical issues re reliability, know what’s safe, choices about what to use, what about the information they use. 3^rd = live phase talking to young people as they use it, design of tech itself and how they use it… Interest in inequalities, and the context in which digital engagement takes place… technology seen as removed from rest of social/cultural context – how do e.g. family shape use, where are they when they go online, how does it shape what they use online… online/offline interaction…

• Willingness to share (quite private) data, subjects of surveillance (what choices do they have about data being collected about them)… e.g. through digital toys – see Ben Williamson… using mobile to learn about health, but 52% survey participants were using an app to track their diet/fitness in some way – Instagram and Snapchat favourite platforms to learn about health…
• Challenge/opportunity – who are people prepared to share data with … relations of power, who has access, etc who shares devices with other people, access/literacy/inequality… Concerns re coercion, questions about social justice – e.g. if can only get health insurance if sharing physical activity … already a live issue…

• Area becoming increasingly complicated/expansive in its breadth. AI seen as the solution to much for the NHS? FDA approved a digital drug – medication with sensors in it – tells people how that drug is working! Questions about who owns data, what we can do with our data, etc. esp as we are limited in our access to data. Do younger generation feel more empowered, or co-erced into that world…

• Do people go onto these kind of apps from ‘tabula rasa’ – or because they have a problem? What are the motivations – v. different – wide range. With young people … typically an issue/concern will look to digital fora for a solution.
• Do young people share more than older people? Makes people more confident to go to GP, etc. Young people = normalised = used to tracking, engaging, etc. online, so health is not an unusual area for that …
• Mobile devices are normalised, part of everyday life, but schools are pushing people away from using that… Schools may be using apps instead of other resources (e.g. mental health app) – how are they being drawn in in ways they haven’t before…
• Cultural divide … secondary school now – grown up with iPhones, but teachers haven’t… A year away from digital, and it’s all changed…
• How do you deal with the fact that major things may be missed? A lot of work connecting patient groups together … support groups = adult things, what do they do under 18s to find support? What about benefitting from the insights from 1000s of drs, rather than one human dr … long shift to go there.. NHS able to keep up with the use of this data, etc.?
• Fatigue/boredom, 6 weeks on, people tend to abandon all kinds of apps… BIG question – ownership of own data, etc… Some only see it as needing a lock on the phone, rather than the bigger picture of what happens to data, etc.
• More data of different kinds, can increase anxiety amongst users … difficult for many of us to make sense of what that data means… e.g. labelling overweight, etc. damaging for young people, lead to crash diets, etc. Challenging issue for the future – so many apps, and some collecting data before we even choose to do so.
• Sleep, food, activity levels, etc every part of our life can be quantified in some way.
• Fake news/health – aware of it becoming a big issue in last 18 months … not looked explicitly. Health related info e.g. fitness, nutrition, etc. are a significant source of fake news… diet, etc massively contested before we even get to the digital, so a challenging environment to be in ..
• Young people reducing time going to websites, spending more time on apps, data policies unclear on how shared, etc. locked into certain spaces… Don’t know about the journey that someone goes through on a particular app… big gap in our knowledge… Anxieties – young people avid followers of e.g. fitness bloggers, trendsetters, etc. very difficult terrain to manage… demonstrating that you’re the ‘right healthy citizen’ and ‘doing the right things’ – the data and the popularity!
• Much more visually investigated … journey into information, proliferation of channels, and no central channel which has authority. Big shift about how receive information about all kinds of things – including health, who is the voice of authority in health… [Notion of who is an expert … ]
• Earlier research – being measured/weighed – led to hyper (self) surveillance … comparing/contrasting – ways of standing out … thinnest, healthiest, etc.. Heavily moralised…
• As healthcare becomes more reliant on data, becomes locked into propriety systems, difficult to get out once in them … old fitbits chucked in a drawer! How to access own data, and what is happening to their data … will young people rise up and not share data any more – ‘this is the way of life’..
• Where does the individual fit in that, where are govt discussions, etc. Priority access to healthcare if a ‘diligent healthy citizen’!
• Should the NHS be central to digital health – is there enough joined up thinking, do they understand the issues, or are we going to have to hand data over to private companies. NHS tech challenged = not a secret! Big data companies have worked out how to make platforms that are easy to use, etc. – much more agile than NHS that tends to make use of tech just as it’s becoming redundant.. are we going to engage with health information differently?
• Interesting – some young people still looking to the NHS for guidance…. Still the kitemark/rubber stamp.. not a library of recommended apps.. Reviewed policy documents re digital health, limited understanding – assumes that digital is empowering and that all have access, can navigate it… beyond whether can afford ‘internet access’! As gap widens, young people will experience health differently… Organisations that might push apps, etc. onto young people – how equipped are they to use them? Digital health = always the solution.