Abstract
Rapid economic growth, industrialization, mechanization, sedentary lifestyle, high calorie diets, and processed foods have led to increased incidence of obesity in the United States of America. Prominently affected by the obesity epidemic are the most vulnerable such as the rural poor and those who have less access to nutritious and healthy foods due to barriers such as socioeconomic, infrastructural, and organizational. Wearable technology (WT) and health fitness applications (apps) have the potential to address some of the health disparities associated with obesity. Monitoring health parameters through WT and Apps using remote sensing technology generates personal health data which can be captured, analyzed, and shared with healthcare providers and others in social support network. Because captured data include protected health information, and breaches can occur, the concerns about health data privacy, personal ownership, and portability are addressed in this chapter.
TopBackground
Data privacy is a major concern if the data are stored and shared carelessly despite encryption. Encryption prevents unauthorized parties from having access to intelligible data because they lack the key to decrypt the data. But, even with military encryption there are data breaches as was evident when Strava, a global positioning system (GPS)-based cycling and running App, accidentally revealed the location of US soldiers in Syria and Iraq by publishing the global “heat map,” showing the movements of people who had made their data public. Strava is a digital service which calls itself the “the social network for athletes” and can be accessed and used via mobile App for personal training, monitoring, and social interactions – uploading runs, sharing updates, and following other athletes. One of the drawbacks with Strava, as with any other data-generating and management technology is that a rogue third party could easily obtain and sell the data to “shady” organizations that could compromise individual and organizational data. Regarding information protection, Strava claims:
We take several measures to safeguard the collection, transmission and storage of the data we collect. We employ reasonable protections for your information that are appropriate to its sensitivity. The Services use industry standard Secure Sockets Layer (SSL) technology to allow for the encryption of personal information and credit card numbers. (Strava Privacy Policy, 2019)
On the Privacy Label, Strava clearly indicates that it shares and sells aggregate information and that it retains personal data as long as necessary unless the consumer requests for deletion (Strava Privacy Policy, 2019). Given these far-reaching controls over data ownership, especially when it is shared or sold as aggregate information by entities like Strava, users have no control over it. However, users can have control over it when it comes to sharing their data, including personal health data, with third parties, only if users voluntarily and diligently remember not to give consent (opt-out) to Strava to share their data. Thus, the onus falls on the clients to opt-out, and Strava operates with the premise that many users will simply forget about it.
Individuals feel empowered in managing some of their problematic health consequences by having access to their personal data and controlling it in terms of capture, analysis, and sharing with healthcare providers and those in their social support network (SSN) such as family, friends, and colleagues (Vo, Auroy, & Sarradon-Eck, 2019). Even though data portability makes personal data interoperable between different data controllers, the individuals, technically, do not own their personal data – they can just share their data using Apps and digital services. According to the Center for Digital Democracy and the School of Communication at American University, the US consumers and their personal data are not provided the protection with regard to WT, making it vulnerable.
Key Terms in this Chapter
Diabetes: It is a chronic disease in which the blood glucose (blood sugar) level of a patient is too high.
End Stage Renal Disease: Also known as kidney failure, end stage renal disease (ESRD) is the permanent failure of kidneys to their lowest filtration level (stage 5; 10-15%) at which point a patient requires either a dialysis treatment or a kidney transplant for survival.
Comorbidity: The presence of two or more (multiple comorbidities) chronic diseases or disease conditions in a patient.
Cardiovascular Disease: A class of disease involving the heart and/or blood vessels. Examples include myocardial infarction (heart attack), coronary artery disease (CAD), hypertension, cardiac arrest, arrhythmia, and congestive heart failure (CHF).
Obstructive Sleep Apnea: A sleep disorder in which a patient’s breathing stops and starts during sleep because of the irregular opening and closing of the airway throat muscles. Examples include snoring and daytime sleepiness.
Appalachia: A cultural and geographic region of the United States stretching from southern New York to northern Mississippi comprising of thirteen states and four hundred and twenty counties whose residents are stereotyped as impoverished, backward, isolated, and lacking healthcare and infrastructural resources and, contrary to conventional belief, the region has a distinct and rich mountain culture.
Obesity: It is a complex disease in which a patient has excessive amount of body fat with a body mass index (BMI) of 30 or higher.
Portability: The right/feature that allows a user to transfer (port) their personal/health data across different platforms or from one service provider (organization) to another.