Did you know that smartphone applications (apps) are now available for all aspects of healthcare from tracking symptoms, recording symptoms, making a diagnosis, to alerting the doctor, and also for patient education? Above all, these apps come free. But why are some people concerned?
The reason why these apps are made free is that the developers get a lot of data about us- the users. Now the big question is what happens to all the data collected? If you are already using an app or you have been advised by your physician to use an app, you have reason to be concerned.
More than 300,000 apps were available in 2017. There are 84,000 health app publishers, and 3.6 billion apps were downloaded last year.
It is irrational to assume that all these app developers have purely humane intentions. Many of them are using their apps to make money by selling our data to other organizations, targeted advertisements etc. However, some app developers do have purely altruistic intentions and use our data only for research or clinical care.
How can we, as app users, know what data is collected and how it is being used?
We might think that the app’s privacy policy would provide that information. However, in an analysis of privacy policies of 29 apps used by people with migraine, researchers discovered significant disparities regarding their disclosures.
Some developers disclose that they intend to use the consumers’ data, without providing any details; others claim they will not, and some make no privacy claims at all. Given the fact that many apps are wholly unregulated, it is extremely important for clinicians and patients to be aware of the risks versus benefits.
Greater is the concern when one thinks of the apps that are developed for vulnerable population, such as people with dementia. Many apps are available to track, document, and manage behaviours, to assist with communication, to monitor sleep, to track movements and so on.
According to a report published in the American Journal of Geriatric Psychiatry, of the 72 apps developed for people with dementia, 46 per cent had a privacy policy, many of which were hard to understand.
Only 25 of the dementia apps described how they handle user data, of which 80 per cent said they may share data with business partners or third parties; 60 per cent said they may record the user’s Internet protocol address or details about their specific device, and 52 per cent said they would sell data in the event of a merger.
Dementia being the biggest public health concern in terms of overall healthcare costs, many experts see technology-based interventions as the solution to reducing costs. If smartphone apps are to become the tools for improving care and quality of life of people with dementia, then it is imperative that privacy protections are put in place as early as possible.
The next question is if we use an app with a privacy policy that promises to protect the user’s data, is our data safe? Eric J. Stieglitz, JD, a technology and privacy lawyer in New York, says that though the app developer is legally bound to abide by the terms specified in the privacy policy, there is no way of knowing whether they are actually following their own policies.
More concerning is what they are doing with our data. The data from the health app could be pooled with data from other sources to create a user profile that many organizations would pay to acquire. The app could be collecting GPS signals that show where the user lives and what his/her symptoms are. Then there is the biggest fear that one day our data could get into the hands of insurance companies.
Generally people worry about sharing their personal health information with researchers, when participating in a study, even though the research team is bound by ethics board privacy policies. Surprisingly, we are undisturbed about privacy /security issues when entering our health info on an app.
Does this mean that we have to ban all apps? Certainly not, as they make it easier for us to manage our health condition more efficiently. Apps can be very beneficial for us, if we take precautions.
The first step is for physicians to be familiar with privacy policies associated with 2-3 health apps they are planning to recommend to their patients. If your physician is recommending a health app or if you are considering an app, discuss the issue of benefits versus risks, and privacy and security, with your physician before you decide to use the app.
Padmaja Genesh, who holds a bachelor degree in medicine and surgery as well as a bachelor degree in Gerontology, has spent several years teaching and working with health care agencies. A past resident of Red Deer, and a past board member of Red Deer Golden Circle, she is now a Learning Specialist at the Alzheimer Society of Calgary. Please send your comments to padmajaganeshy@yahoo.ca