Cassandra - With Positives of Health and IOT Devices Comes Potential Data Misuse for Users (1): The Value of Devices

By Graham K. Rogers

The release in the USA of an Apple Watch ECG feature is an indication of how important to health of users wearable devices now are. As with IoT devices, risks from misuse or loss of data will increase. Users should be made aware of how data may be misused. There needs to be further protections built into sign-up processes.

When Apple began its development of what would become the Health app and HealthKit,it seems there were two major areas of pressure: Steve Jobs' own illness created a climate of related interest within the company; and already there were considerable developments in medical technology. Initially this development focused on larger equipment - MRI, Ultrasound, ECG - but began to trickle down to more personal needs, such as exercise input, heart-rate, blood pressure measurement and blood-sugar testing.

In parallel there was considerably more interest in home technology, driven in part by the visions of movie-makers, even as far back as the Korda Brothers in The Shape of Things to Come. More recent movies including sophisticated automation include I Robot (Asimov), and Minority Report (Philip K. Dick - also Blade Runner, Total Recall, Paycheck and others). I should also mention the failed technology (for comic effect) in Terry Gilliam's Brazil (1984): the idea is there, but not the execution. In only a few years we have come a long way. I see one of the important moves here being Philipps with their automated Hue lighting system: one of the basics on which any technical home could be based.

While I had always been convinced of the value of home automation, my conversion to the importance of Health technology was confirmed when I interviewed Dr Richard Milani while he was attending a conference in Bangkok in 2016. He was a good advocate for individual health monitoring, using smartphone technology and the Apple Watch, while also having some good ideas of what would like to see in the future. One of the examples (still to be implemented) was the ability for pregnant women to carry out a home test and send the result to a hospital.

Currently, the patient would need to attend a hospital where the urine would be tested, tying up nurses and lab staff. This would be followed by a consultation with the doctor, who would normally report that all was well and the patient would make a further appointment when the same process would be repeated. With a home test, the result would be sent to the physician. If there were some cause for concern, then an appointment could be made. As with other processes, home-testing could save time and money, while also signaling a problem that could then be dealt with by competent medical personnel.

Not long after speaking to Dr. Milani (I mean a couple of hours) I picked up a device in Bangkok for testing blood-sugar levels. The technology has been available for home testing for a while, but more recent devices work with smartphones. I had never tested my blood for this, although I know some with Stage 2 Diabetes. With my sugar intake, though it worthwhile.

For 2 weeks I restricted my evening intake and when I awoke each morning drew a small amount of blood and tested it using the G-Mate device that connected to my iPhone. This was not a HealthKit device, so the app did not automatically add the data to my Health app, but I was able to see a readout as I ran the test, rather than wait for a lab result.

The figures were higher than I wanted, so after 10 days I went to a hospital where I was tested for Diabetes as well as Cholesterol, Lipids and other diet-related inputs. Blood sugar was OK, but Cholesterol and Lipids higher than normal. Having been given the warning through the home test, I was able to check at a lab and act on the results to change my diet. Later tests (every 3 months) were much improved.

I added a Withings Blood Pressure device and much later a set of Nokia scales, so with input from the Apple Watch (heart rate and more) I have a good picture of ny day-to-day state. Rises and falls of weight, especially, allows me to make changes in order to compensate.

For a few years now I have taught a short course on Ethics and Morals to Computer Engineering students. I try to bring real-world examples of problems, such as the VW-Audi emissions scandal which was a software fix, and the related way some smartphone companies include software that sends adjusted data when benchmarking software is detected.

Another area we examine is the use of personal data. I am particularly critical of Google, but recent (and still-ongoing) revelations concerning Facebook, Cambridge Analytica and others were a gift, providing me with much teaching material. The use of data might also impinge on individuals some of whose data is created on IOS or medical equipment. With the growing reliance on devices, the amount of personal data online can be considerable, from credit cards, shopping trends to sharing fitness data with others (e.g Nike) and sending health data to online storage systems.

My weight and blood-pressure checks are sent to Withings each day (they took back the company from Nokia); and they also glean other information from the Apple Health App (with my permission). Sleep data is sent to Northcube AB in Sweden, and my heart rate data is sent to Cardiogram: this is part of a long-term academic survey, using data from the Apple watch. I am keen to be a part of this for ways in which others may benefit.

With each of these I have agreed to share data. This is partly for my convenience so that I can retrieve data of the device is not available for some reason. However, with all the personal data I must trust the organisations, but there is always the risk that data may be hacked or stolen. As I am an individual, the data may not be significant, but the data of thousands of I users will have a greater value.

A recent article caught my eye concerning the use of a mattress that would record movement and store the data online. This is more or less what the Sleep Cycle app does for me (using sound input) and each morning I am able to see how well I slept. With the stored data, I am also able to examine trends (it accesses other Health App inputs) and adjust my habits. This is particularly useful after a series of late nights. There are other devices like the Beddit monitor that Apple bought a while back. While I was writing this, a new version (3.5) of the monitoring device was released (Dami Lee, The Verge) although it is not yet (if ever) available here in the Apple Store for Thailand. Amazon shows a Beddit 3 sleep tracker which will ship here, and also carries a considerable cheaper Nokia device.

There is a downside to this with a report on ProPublica (Marshall Allen) outlining the way an insurance company was able to monitor the CPAP breathing machine he used at night to help with his sleep apnea. The data was being sent to the insurance company as well as his doctor,the maker of the machine, and to the medical supply company that provided it. The data could be used by insurance companies to increase rates for those who need medical support.

In the Ethics and Morals Class I mentioned out some of the ways data used in this way can be beneficial along with the abuse of software and data by VW and phone companies. I also pointed out that a company in Canada, We-Vibe, had been fined $3.7m for collecting customer data (Janet Burns, Forbes). There was no report of data being stolen, but customers who signed up for the app (still available on the App Store and Google Play) felt their privacy had been invaded. This of course is a far more personal, intimate and private form of data. Perhaps there is a line in the sand here.

A comment on Twitter (Michael Farrell) about the Sleep Number mattress suggested a lack of knowlege about the devices, although it is right to be concerned. A look at Terms & Conditions, does suggest that this is always On and would record data from anyone using the bed, and with any activity. The user signs up for this and the data includes, a "person's movement, positions, respiration, and heart rate while sleeping". At least with Sleep Cycle I only activate the app at the times I go to bed. As well as deep sleep and times I may get up during the night, if I snore (sometimes) it records that too. There is an option for online backup, which I keep Off.

See also: Part 2 - With Positives of Health and IOT Devices Comes a Potential Data Minefield for Users: The Ethical Minefield

Graham K. Rogers teaches at the Faculty of Engineering, Mahidol University in Thailand. He wrote in the Bangkok Post, Database supplement on IT subjects. For the last seven years of Database he wrote a column on Apple and Macs. After 3 years writing a column in the Life supplement, he is now no longer associated with the Bangkok Post. He can be followed on Twitter (@extensions_th)