The NHS's Long Term Plan makes it clear that what is envisaged for the future is a more personalized health care model, better able to manage existing illnesses on an individualized basis leading to something more proactive not just personal, over the long term.
This vision is predicated on the power of genetic testing and all manner of data collection though. We've seen a huge increase in the amount of personal biological data being captured, stored, and analyzed and we've become more aware of it during the Covid pandemic. Today thanks to wearables that can track your movements and apps that can monitor heart rate and other patterns of behavior, it's becoming clearer that both our own data footprint and the data in our surrounding environment could provide important insights into our personal health over time.
Now the notion of 'digital phenotyping' has entered the lexicon and is being promoted as a helpful way to understand the potential of data extraction to this end. It basically means 'patient-generated data'. That data can be passive as well as active - it's any data collected via your smartphone or wearable devices that can provide information relevant to any illness - whether that be physical, psychiatric or perhaps to do with age. It not only includes the data you produce on your device but the data your device picks up from the environment you find yourself in.
I was reminded of digital phenotyping, whilst reading about Apple's development of technology to help diagnose depression and cognitive decline, reported by the Wall Street Journal. The paper reports that using an array of sensor data that includes 'mobility, physical activity, sleep patterns, typing behavior, and more, researchers hope they can tease out digital signals associated with the target conditions so that algorithms can be created to detect them reliably'. But do I want my phone to diagnose my depression or cognitive decline? Not really, no. I certainly don't want it to send that diagnosis or share that data with a health provider, with or without my knowledge. There is a huge unanswered question here as to the governance of this data: how is it made secure, and with whom is it shared?
Once again it turns out that your smartphone is a surveillance machine, not only tracking you but now diagnosing you. And what if that diagnosis is based on your information environment? What if Apple decides that reading certain news opinions or visiting certain websites, particularly those that are non-aligned to the official narrative of the regime, constitute some kind of psychiatric condition. What if that psychiatric condition is considered, by those in possession of this data, to make you a danger to the 'public health' of others. After all one of the aims of digital phenotyping is the profiling and predicting of human behavior.
It sounds fantastical but so did vaccine passports for domestic daily life, a few years ago. Whatsmore, Matt Hancock's Health Security Agency that he established in the Spring before his departure as Secretary of State for Health, sets out its remit to protect the nation from infectious diseases but also from 'public health threats'. What are those? Well, they could be anything. Maybe you, according to the diagnosis made by your phone, are a public health threat. Maybe your mental state is a threat to the health of the rest of us.
We might see an emergent framework for the governance of digital phenotyping but right now it feels like the notion could be as much a threat as any help to personal health. It all comes down to how involved the technocrats are - whether they be of the state or be state actors. It remains to be seen whether personal health will ever be personal again, or whether thanks to digital technology and digital phenotyping, personal health is replaced altogether by public health. That sounds like the biggest threat to me.