I recently had the opportunity to join Boston news media veteran, Dan Rea, on his AM radio program, Nightside with Dan Rea. It was a one-hour call-in program and an eye-opening experience for me. Dan and I chatted about connected health and how it can truly disrupt care delivery and put the individual at the center of their own health. Then Dan opened the lines to the fine citizens of New England for questions, and the phones started ringing off the hook.
The overwhelming concern — actual fear — among callers was maintaining their privacy in an increasingly connected world, especially their personal health data. I was so struck by the extent of concern, I thought I’d present a few theories I’ve been contemplating on the subject.
When it comes to privacy issues, the cyber world is typically characterized as a sinister place, where consumers are duped and exploited, their data leaked or stolen. What we, unfortunately, don’t talk about is what consumers have to gain by sharing their data. For instance, the same information that can be used to create highly personalized programs to help people stay healthier and happier, can also be a key factor in improving efficiencies and reducing health care costs. Further, it’s been shown that sharing data with providers, friends or social media groups can actually help people stay on track with their health and wellness goals.
Yes, there is always some risk sharing personal data — whether online banking or communicating with your health care provider. But there are also rewards. In my view, it’s a trade-off, and one that I personally am willing to make with my own health data.
As I see it, there are two main problems when it comes to privacy. First, many companies have not been forthright regarding their privacy policies, leaving consumers unaware of when and how their data is being used, sometimes in ways they may not approve of. Second, we are all too aware of some alarming data breaches that make consumers wary of posting or sharing their personal data.
We can combat much of consumers’ fear by making privacy policies transparent, putting a halt to spying on people without their consent and creating systems to keep data confidential. Bottom line, the rights of individuals must be protected, and organizations — health care providers included — need to do a better job explaining privacy issues and safeguards.
As my friend and colleague Rob Havasy pointed out to me, HIPAA doesn’t directly apply to most connected health interventions, certainly not to those things that don’t directly connect to a hospital. Therefore, the consumer’s protections are covered by the privacy policy of the company that provides the equipment or service.
In my mind, privacy is not a complicated issue. In fact, it’s pretty straightforward.
So how do we increase consumers’ comfort levels and create more transparency around the red-hot issue of privacy?
Here are two simple ideas:
For anyone who is in the health care space, whether you’re a payer, provider, business or entrepreneur developing connected health devices or programs for consumers, you should be very forthcoming about your data collection and privacy policies. And, by all means, provide this information in simple, easy to understand language and skip the legal jargon.
And consumers need to understand that there’s no such thing as a free app. If it’s a free service, more than likely the business model will sell advertising – or data – including subscriber lists, to marketers. In most cases, without this revenue stream, there would be a fee attached to the service. This is a concept most consumers will understand.
Some will opt for the free service with the understanding that they give up some privacy. Others will want a fee-based service that will preserve their privacy. Either way, it should be the consumer’s choice.
Is the privacy fear such a turn-off that consumers will never agree to share their health data? Or can we help individuals understand the trade-off?
Joseph Kvedar is director, Center for Connected Health, Partners HealthCare. He blogs at the cHealth Blog and is the author of the Internet of Healthy Things.
Image credit: Shutterstock.com
