The digital health movement is shrouded in a flurry of excitement and optimisn, but despite the acclaim, the issues of bioethics and new products’ usability have surfaced and demand concern and deliberation.
In 1996, Congress passed the Health Insurance Portability and Accountability Act (HIPAA), which expanded access to patients’ records and allowed various drug firms, marketers and researchers to gather personalized medical data to try to make more money.
One primary concern naysayers pose against digital healthcare is that without sufficient regulation, personalized medical information collected through digital healthcare will lead to a more sophisticated form of discrimination.
“Personal health information can be used to discriminate in countless ways beyond simply denying one enrollment in a health plan,” Senior Health Policy Advisor to former Senator Olympia J. Snowe William Pewen said to “The Atlantic.” “One could use [personal health information] to evaluate potential customers, employees or associates.”
Discrimination based on health records may be innocuous, manifesting in advertisements for treatments specific to one’s condition — say a new cancer therapy designed for a user’s specific tumor. However, similar usage of medical data could be blatantly damaging as insurance companies charge more or refuse to serve those with records of past medical conditions.
“Once an individual’s medical record is compromised, it’s like a credit account — such data never expires, and a replacement cannot be created,” Pewen said. “The damage is permanent and irreparable. In the language of the law, a victim cannot be made whole.”
Moreover, with digital health systems susceptible to breaches, this important and private data loses the security it once possessed. From 2009 to 2012, over 14.8 million unencrypted patient records were compromised in 10 data breaches. Even when Congress designed policy to force companies to notify patients if their records were compromised, the pharmaceutical industry quickly rejected the idea and lobbied against it. In the end, large pharmaceutical companies or “big pharma” have often looked to increase gains at consumer’s expense, and digital health may give them another avenue to do so.
Though the issue of bioethics poses important moral questions, digital health faces practical shortcomings as well.
In a study conducted with 26 patients at Zuckerberg San Francisco General (ZSFG) published in the “Journal of General Internal Medicine,” researchers concluded that mobile health apps offer little help to vulnerable populations because they’re difficult to navigate. Only 51 percent of participants could finish data-entry tasks across all apps, and participants could only retrieve data from the apps 43 percent of the time.
“Many of the patients we see at ZSFG — who have serious, and often multiple health problems — don’t appear to be able to use or access this technology,” Urmimala Sarkar, an associate professor of medicine who led the study at the Center for Vulnerable Populations at ZSFG, wrote in the study. “And they’re the ones who have the most to gain from these advances. We need to see more of a focus on designing technology for this population.”
Fragmentation poses another issue. Think of a current consumer of digital health: they may have an application to measure fitness, one to track blood glucose level and yet another to plan diet. This niche utility allows more companies to make more profit by creating many different products, but only creates more burden for the patient, especially those whose vital medical needs are split across various fields.
Moreover, critics are skeptical about the usefulness of many digital health products. Many believe current products only track and augment a normal lifestyle, rather than adequately serving patients in more urgent need.
“The system needs to be re-engineered,” chief technology and strategy officer of the Robert Wood Johnson Foundation, a philanthropic organization focused on health, Stephen Downs said in an interview with KQED. “We don’t need an app that counts steps. This is about finding solutions for people that are more compelling than the patterns that we have established.”
In the next few years, digital health has the potential to significantly lower healthcare prices, create better coordination in and out of the hospital and help tackle chronic diseases. In light of this, the idea that usability currently has its flaws isn’t so much a critique of digital healthcare, rather a critique of the present. Meaning, instead of disavowing an entire field based on its current flaws, we should build from those flaws a better system to serve the needs of humans in a quickly modernizing world.
The issue of bioethics, however, is a bit messier. Similar to usability, the problems do not lie in the field of digital health itself — changes in the status quo could help mitigate the problem. With greater regulations by government organizations and advancing technical security, digital healthcare can provide safer services to patients.
There’s no reason to reject digital healthcare based on current problems. Yes, it is important to identify the shortcomings of the field in the midst of the predictable hype surrounding digital health. However, these problems are not cause for lament, as innovation to better the field is rooted in being aware of these flaws.