Recently I touched on the launch of the new health watch released by Google’s life science division Verily.
The device, known as the Study Watch, is designed fot the research industry, and will initially be put to work on various multi-year studies in areas such as Parkinson’s.
“The ability to passively capture health data is critical to the success of continuous care platforms and clinical research,“ the company say. “Study Watch represents another step in our targeted efforts to create new tools for unobtrusive bio-sensing.”
Those ambitions took on a more concrete hue with the launch of a dedicated website to collect data from the watches for research purposes.
The venture, known as the Baseline Project, is aiming to recruit 10,000 people to participate in a multi-year study into finding predictors for heart disease and cancer. Participants will subject themselves to extensive monitoring and testing via the study watch that will record their activity levels in real-time. In addition to the readings from the watch, participants will also undergo x-rays and heart scans, and will also have their genome mapped and blood tested at regular intervals over a four year period.
“No one has done this kind of deep dive on so many individuals. This depth has never been attempted,” the team say. “It’s to enable generations to come to mine it, to ask questions, without presupposing what the questions are.”
I’ve written a number of times about the growing role of data in healthcare research, and Google are developing the infrastructure to support and capitalize on this. The study will try and capture as much information as possible, with participants volunteering stool, saliva and even tear samples in a project that is likely to cost upwards of $100 million.
The project is undoubtedly fascinating and a sign of things to come. Not only is data collected from the study watch and frequent testing, but also via an electronic loop placed under the mattress of participants to track sleep patterns. What’s more, participants also volunteer to give Verily access to their health records (something I’ll come to later).
There are a few issues for the project to overcome however. Firstly, whilst 10,000 people sounds a lot, there may still be issues about how representative the sample is. It’s difficult to equate seemingly large numbers with an accurate cross-section of the population, and so there may be issues to address there.
There are also known issues with long-term collection of data from wearable devices. The fitness industry has long been grappling with fall-off in usage by people whose early motivations wain and the devices they bought with gusto start to gather dust on the shelf. Maintaining ongoing usage will require some persistence from the research team.
As the project team themselves admit that the process won’t provide much insight to the participants themselves, with the main benefit being for researchers rather than participants.
“Anyone going into it asking, ‘How will it help me?”—that is the wrong question,” the team say.
It seems logical that this might influence the motivation of participants, especially in the longer-term.
Trust and transparency
Lastly, there are ongoing issues around privacy and security of data in studies such as this. Neither Verily or Duke, who coordinate the study, have agreed to release copies of the consent form people sign up to, which makes it unclear quite how their data will be used.
A recent study examined the data sharing partnership between DeepMind and the Royal Free NHS Foundation Trust in London in 2015, which saw 1.6 million bits of patient data opened up to the tech giant. It suggests that whilst things like ledger technologies are great, we cannot rely on tech companies to regulate themselves in such matters, and more oversight is needed to ensure data is managed properly.
A separate consent form held on the project website suggests that Verily/Google may sell the data to pharma companies for research, with none of the revenue generated by this shared with participants.
Previous announcements by Google, via their DeepMind subsidiary, of a healthcare ledger framework for storing health data were complicated by the public perception that Google are a company whose business is to monetize data, and so giving them access to so much personal information is fraught with risk.
So whilst the project is undoubtedly fascinating, and has the potential to be groundbreaking in both its breadth and scope, I do wonder whether the folk at Google have really taken on board some of the concerns in the healthcare industry that will prevent such approaches being taken even further.
They might reasonably point to similar longitudinal studies, and to projects such as the Biobank and 100,000 genomes, but those ventures are not run by organizations whose revenue comes from selling personal data.
As Google plan to gather more data about the health and lifestyles of participants than possibly ever before, it’s a lesson that I feel they would do well to heed so that what seems an inevitable progression isn’t slowed by widespread fears around privacy and data protection.