Several years ago both Microsoft and Google invested millions of dollars on a flawed assumption: If they built a useful and free healthcare application, people would flock to it. In both cases, the effort failed. At its peak Microsoft HealthVault was only able to enroll a few thousand—largely inactive—users. Google Health was discontinued after a few years.
The problem was (and is) that unlike almost any other business, healthcare is a negative good.
Even if it’s “free,” as was the case with both the Microsoft and Google offerings, most people find tracking their health to be, in some sense, an admission of frailty, imperfection and mortality. Except for occasional blips related more to vanity (weight loss is the prime example), when it comes to our health most of us are in denial. So when people talk about technology for patient engagement, I tend to pause and wonder: Should we be building apps and services just for patients, or for the people who care about them too?
To some degree, our health defines us. It not only shapes the way we see the world, it also influences how others see us. And that can be problematic. Many of us do not want our frailties exposed to others, even to those who care the most about us. I remember talking to a father who worried about his adult daughter, a brittle diabetic. He had cause to worry; his daughter had almost died several times from diabetic ketoacidosis, a serious complication of the disease. Nonetheless, she eventually refused to allow her father to discuss the disease with her.
“I’m an adult,” she told him. “This is my problem to manage.” I’ve seen the same situation with early-stage Alzheimer’s patients. They may realize they need help from their families, but they fear the loss of independence that comes with admitting it.
Balancing Data and Patients’ Rights
So, how do we balance the useful application of data and the autonomy, dignity, and privacy of the individual? How do we encourage patients to use the tools available to involve their families in their care? How do we turn disincentives (patient denial, fear of the loss of their families’ respect) to healthy incentives (clarity, connectedness, engagement)? For starters, healthcare professionals and consumers alike must carefully consider which aspects of our health (via data) to share. At the same time, whatever our relationship to the patient, we need to be sensitive to preserving independence and maintaining some sense of privacy. These issues are not insurmountable obstacles. Indeed, in enabling the patient’s ecosystem, the people who care about the patient (the spouse, the adult child or the parent), may be one of the largest untapped resources available.
Altering the approach to apps and healthcare services from patient engagement to family empowerment is a subtle but important switch. Such a development will need to be a combination of technology, process, and choice—where one patient sees an opportunity to stay well, another person may view it as a violation of privacy. It will fall to the medical community (providers, vendors, and payers) to understand and explain the risks and benefits of the various options to patients and their families.
If “it takes a village” to be well, so be it.