The Privacy Dilemma

The Privacy Dilemma

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Joseph KvedarI 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. This is a topic I touched upon in my recent book, The Internet of Healthy Things, and one which I will explore further in my upcoming talk at our Connected Health Symposium in a few weeks. But 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 healthcare 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 healthcare 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 – healthcare 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, and 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 healthcare 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, MD is a vice president at the Center for Connected Health.

 

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2 Comments on "The Privacy Dilemma"


Member
Oct 24, 2016

A lot of this concern is due to the fact that there is a paranoia among people that anything on the internet can be accessed by anyone who tries to find it. And to some extent, it is true. There are difficulties in keeping it safe once its online but I have to add that all internet based services pay a lot of attention to keeping their customers safe. I have signed up with OpenTeleHealth(http://opentelehealth.com/), a remote patient monitoring brand and so far have no issues regarding privacy.

Member

re the benefits you say ” 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 healthcare costs.” How has that worked out after hundreds of billions spent?…..likely a net negative so far.

Re how to ameliorate consumer concerns (a more accurate and respectful word than “fears” in my opinion) you say: “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”. Agreed….and that should include the right to opt out. For me, I would much prefer to have the option to find a good doc who keeps paper notes. As it stands, this is fundamentally a coercive initiative…..and “folks”…..sophisticated and unsophisticated sense that.