It is said that the UK has a wealth of health data. The NHS is considered a national treasure by natives and an object of envy by foreign nations. From my experience as a patient and both a participant and public contributor to medical research, I must admit that our healthcare works exceptionally well in capturing routine health data. Not much emphasis though is placed on what the patient wants to feed back to clinicians. This could be for instance results of tests done privately or patient diaries. When I approached my hospital and offered blood after recovering Covid-19 unscathed I was sent away empty-handed. As a patient with a few long-term diseases on immunosuppression, I had thought that my recovery would make an interesting study.
While sharing personal health data through blockchain technology is a relatively recent hype that might potentially lead to some medical discoveries or breakthroughs, I remain wary of it. Despite what is being claimed, this technology is not impervious to hacking, and a completely anonymised record does not yet exist, so I still have concerns about data being tracked back to an individual. Health data may also fall into the wrong hands and be sold on dark web. Furthermore, I have concerns that data brokers are not in business for the kindness of their heart for patients but rather to capitalise on them.
The last thing I would do is to trust big tech with handling my health data. Even if they provide free apps and platforms for tracking your weight loss, daily work-outs, dietary intake, for instance, their first motivation is monetary. If I were to offer my health data remotely, I would have to be convinced that the process is vetted and governed by a governmental body or an official regulator, and that I can have all of my data deleted without a trace at any time without giving a reason.
As much as I am in favour for rewarding people for involvement (not participation) in medical research, I remain apprehensive about being incentivised to share health data with commercial companies. First, it does not seem ethical as health data should not be treated like any other product. To my mind, it is very sensitive and intimate information. Second, its value is much higher than what is now paid in money or loyalty points that can be exchanged for rewards.
With time it will hardly come as a surprise to see the rise of new wearable devices and sensors that can for instance show blood biochemistry in real time. I will be willing to use them but only for the sake of my own care or to advance medical research, and not for commercial purposes. Technologies which seem outlandish today e.g. observing disease activity at a cellular level will also become common.
Participating in an online group discussion about sharing health data has felt right for at least two reasons. First, it is reassuring to hear that others have the same reservations and ideas. Second, you learn other perspectives that you may have not previously considered or rejected outright.
Disclaimer: The views, information, or opinions expressed within the participant’s reflections blog series are solely those of the individuals involved. Views do not necessarily represent those of the University of Manchester, Lancaster University or any other individuals associated with the CDIP project.