Use of mobility data to transform public health – Should you support it?
It’s said if you aren’t paying for the product, you are the product! – would you still sign-up to do good?
I was left with a nagging thought post our last LPA class – ‘If life truly is curvilinear, at what point does it curve? Specifically, how can one identify and control when ‘people-data’ curves from good-use to misuse.
Serendipitously, the next morning I met Professor Caroline Buckee, a top epidemiologist at Harvard T.H Chan school of Public health and learnt of her recent article in the New Yorker which questioned if Americans would allow mobility data tracking for better management of COVID-19 or disallow it claiming privacy concerns? The article took the reader through both the good and the dark side of using mobility data for public health surveillance – while some believed that it was our moral obligation to use this data if it could minimize harm, others argued that rights once surrendered, would be impossible to roll-back.
I share here my insights from the article, and recommendations moving forward both for public health and for each one of YOU – the creators of mobility data.
What is mobility data and who owns it? Mobility data tracking tracks people movement through cell-phone apps, which emit a constant trail of longitude and latitude readings, making it possible to follow consumers through time and space. Google and Meta lead data collection in this space, but dozens of data-brokers buy and share this data. Is it fair to allow such data to be brokered? Can we ever completely turn off such data?
How can we use this data in public health? When paired with other metrics, such as the number of new infections or mortality rates, the data can help academics understand the spread of a disease and policymakers’ action out policies to contain the spread. What about representativeness of the data? What if we are missing inputs from a crucial population pivotal to our decision-making?
Can we maintain data privacy (if we wish to)? Yes! If we aggregate, anonymize, and create enough noise to disallow unmasking of the data, it can be useful for public health researchers and policy makers, while not violating privacy. Then what about malign actors who wish to track and target vulnerable communities using this data?
Who should be the gatekeeper for such data to avoid misuse? It is very concerning to me that, today, such personal data is being brokered through private organizations with at best poor regulation and no laid down rules for data sharing. It is interesting to note that academics currently serve as gatekeepers of mobility data, deciding who gets access and who doesn’t. Are academics the right gatekeepers? What is the role of the government in regulating use of such data? Can regulation bring down a 200 billion USD industry which thrives on brokering such data?
What does this mean for public health going forward? I believe COVID-19 has transformed public health forever. The landscape has leap-frogged from one where incomplete contact tracing data was used to create a static snapshot of disease spread to one where real-time movement across the globe is being used to monitor and contain disease spread. To me, an unsolved piece of the puzzle is to bridge the gap between private sector and public health academia. How well we can do this will dictate the impact big-data will have on public health. I disagree that select academics from premiere research institutions should lead gatekeeping of this data. Instead, I urge governments to create a ‘safe pipeline’ for data sharing, one which binds private players such as Google and Meta to collect data, however, defines its use against a solid governance framework build on accountability, ethics, and impact.
What does this mean for YOU? The next time you hit ‘Accept All Cookies’ on an app, know that you have supported collection of mobility data – data which could help combat crises and protect your loved ones, while maintaining your anonymity. However, it is also true that if you aren’t paying for the product, you are the product. It is you who has the right to demand anonymity and the power to create a movement to bring governance and regulation to ensure that we strike the perfect balance on the curve and data for good is made even better!
Hi Meghna! The connection between analytics and public health is such an interesting topic! All of the points you raise about how to share this data, if it is missing any crucial groups of respondents, etc. are really important. I was also surprised to learn that academics are some of the gatekeepers of this data, I had always assumed it was just large corporations. I totally agree with you that if this data continues to be collected, there should be a pipeline for making it available (as long as it’s anonymous). That’s the case with large scale census or other survey data. Good point re tracking vulnerable communities, though I also wonder if there are instances in which this type of data can actually reveal or spotlight how vulnerable communities are disproportionality harmed by certain health crises? Part of the issue seems to be concerns that there’s a lack of transparency when it comes to how this data is collected/used. If there was full transparency and the anonymous data was made widely available, would this help? Would really clear and transparent opt-out policies (similar to what we are seeing now for cookies) allow people to consent? I’m not sure there’s a clear answer, but I enjoyed thinking about these issues!
This was such an interesting read, Meghna! This statement really resonated with me: “It is very concerning to me that, today, such personal data is being brokered through private organizations with at best poor regulation and no laid down rules for data sharing.” I find myself in this really confusing position, which I found was echoed in your post, of coveting and admiring the power of data, but at the same time worrying about the ethics of how the data is collected and “owned.” For example, in reading your piece, I really felt that if my data could help minimize harm, then I am happy to share it. Though, at the same time, I know this data is owned by a large corporation (e.g., Google) and is being used in myriad other ways (many of which I probably don’t agree with). This takes me back to my constant concern about people analytics: who is regulating the collection and use of data, and are they being held to any ethical standards? I think, as of right now, the answer is no. However, I do have hope that as the use of data proliferates, and the public become more aware, hopefully there will be checks and balances put into place to help monitor this process.
Hey Meghna – Great blog about a truly important topic. Similarly to the popular opinion, I am also convinced that utilizing the power of mobility data is part of future-state public health practices for sure. It would be interesting to see how mobility data could be used in conjunction with – let’s say health data from smart devices – to detect and contain the spread of communicable diseases. Imagine a world in which your smart watch monitors heart rate and body temperature that could detect a viral infection before one feels the symptoms. Simultaneously these devices could send anonymous signals to a national data base that links location of subjects experiencing such symptoms with trends in the area. As a result, in the future we could use such data to detect, contain, and respond to disease outbreaks much more efficiently and effectively. This could be the key to preventing the next pandemic and/or epidemic.
However, such practices are not without danger as gathering health and mobility data opens the door for misuse and abuse of such data. Your blog raises important questions about who, how, and when such data could and should be used. Questions that I ponder myself and hope to find answers to in the future as well. Great post, providing a lot of food for thought.
Hi Meghna, this is a great article as it gives context and clearly articulates your point. I would like to dig deeper into the role of academia as gatekeepers of mobility data. In countries where governments and public institutions are weak, academia can serve the role of gatekeepers, as when a truly independent and accountable committee of universities is assembled.
In the US, I would be interested to understand if any conflict of interest arises when an institution such as Harvard stands as a gatekeeper. Could Harvard’s endowment or funding be dependent in some way on corporations that use such data? Meanwhile, as it counts on world-class academics ready to build standards and do research on how to manage such data, Harvard has, at least, the leverage to play a role in establishing a proper framework on this issue.
Happy to hear your thoughts!