Privacy vs Health. Would you make the trade? – Feb 11th Chat

Fast-Runner-Slow-ShutterBlog post by Colin Hung

A colleague of mine recently got a new FitBit Force™ the latest activity and fitness tracker. I was amazed at both the style and function of the product. It’s simply incredible what it monitors – sleep, steps, calories burned and even eating habits. The most fascinating feature was how you can create a group of “fitness friends” so that you can compare your progress – so that you can hold each other accountable to fitness goals (or compete for bragging rights).

This ability to share your fitness data got me thinking about the issue of privacy and healthcare. In recent months there has been a lot of talk about the amount of private healthcare information that we, as patients, make freely available via social media and via personal monitoring technologies (like fitness trackers). This data can be used (and is) by insurance companies, researchers and in some cases your own healthcare providers.

Should we be concerned? Does your opinion change if you, as an individual, benefit from sharing this information (like lower health insurance premiums)? What if this data could benefit other patients/healthcare in general?

Join us for this week’s #hcldr discussion on Tuesday February 11th at 8:30pm Eastern Time (GMT -5) where we will discuss privacy and health.

  • T1: Is there such a thing as a patient sharing too much health info online?
  • T2: Should a provider use patient health info shared freely online? (ex: doc recommends cessation program to a patient who smokes)
  • T3: If your insurance company or employer offered you a reduction in premiums but you have to let them track your health, would you?
  • CT: What’s one thing you’ve learned tonight that you can take to your place of influence to help a patient tomorrow?

Background

Social media is a wonderful thing. It connects us to people around the world in ways that were not possible via pen, paper or phone. Armed with tools like Facebook, Twitter, LinkedIn  and the cameras we all have on our smartphones, we are sharing more information about ourselves than ever before. In fact I would argue we, as a society, have never been more transparent and open than we are now.

But that openness has risks and lately questions have begun to arise over how the information we make publicly available is being used. A poignant illustration of how much personal information we are putting out on the Internet comes from a 2012 public service announcement entitled “Amazing Mind Reader Reveals His Gift”

In the video, the supposed psychic, “Dave”, draws in random people off the street and proceeds to do a reading. Unbeknownst to everyone, Dave was receiving information via a hidden earphone from a team of researchers who scoured the Internet for data on the individual. Yahoo and Forbes each had excellent commentary on this video.

At the same time, sharing our most intimate/painful experiences online is becoming a common form of catharsis. People post about losses, personal issues and even medical diagnoses they have received. In a great CNN article, Dean Obeidallah (@deanofcomedy) comments how we at first shocked at how a friend shared his cancer diagnosis and then watched as the outpouring of support from the community helped him through his journey.

It really hit home this year when a friend posted on Facebook that he had been diagnosed with cancer. I was shocked, first by the news but second by the fact he announced his diagnosis on Facebook. Typically, this would be the type of news you would share only with family and close friends, and probably in a face-to-face conversation.

But reading the comments responding to his original posting — and the comments to his subsequent posts about his treatment — caused me to change my view on what was appropriate to share on social media. The amount of support he received on his Facebook page was astounding. He was touched by it, noting that the outpouring brought him comfort and inspired him to fight the disease even harder.

#hcldr friend Naheed Dosani, MD (@NaheedD) wrote an excellent post for KevinMD. In that post Dosani talks about how “patients sharing their stories in virtual support groups” could be used as part of public policy to “encourage patients to pursue healthy lifestyles”. It’s a very interesting notion…one that is based on the fact that patients are sharing more and more personal health information online.

The question is: Are we, as patients, sharing too much health information about ourselves online? Is there even such a thing as “sharing too much”?

It’s not just patients sharing information online either. In an article in The Atlantic, Dr. Matthew Katz (#hcldr friend, @subatomicdoc) talked about how physicians can learn about the patient experience through online chats and incorporate that learning into the way they treat their own patients. In that same article Katz also comments that some patients may not be aware of how their information is being used.

Think about the following scenario. A 35 year-old male patient posts dozens of pictures on his Facebook account where he is seen smoking heavily. His Twitter feed is similarly full of references to popping out for some “fresh air” with a cigarette. His social media savvy doctor (we love you!) sees these posts, is concerned and believes his patient could benefit from a fantastic new smoking cessation program. Should this doctor bring this up at their next appointment?

Personally, I’d be happy if my own physician did this. Primary care physicians are extremely busy. If you have one that would take the time and the initiative to look up your social media profile in order to be more of a partner in your health – hold on to them and NEVER let them go. To me this represents a deep level of caring. Having said that, I’m not sure others would feel the same way.

How would you feel if your primary care provider looked at your Facebook, LinkedIn and Twitter activities to get to know you better? What if they could use your social media activity to make better health recommendations for you?

Over the next four years, the home and personal health monitoring market is expected to grow to a whopping 170 million devices by the year 2017 according to a market study by GigaOM Pro. Everywhere you turn you can see people with fitness tracking devices like from FitBit, Nike, Jawbone and others. These devices generate gigabytes worth of health information – information that is valuable to the person wearing the device, but to many others as well.

Insurance companies and employers are offering discounts on premiums to people who are willing to wear activity tracking devices and share their health/fitness information with them. Stan Alcorn wrote an article last year for Marketplace that cited an Orwellian example of company who conducted a trial with making employee fitness data openly available. Could this be glimpse of our fitness-tracking future? Alcorn thinks so:

Big insurance companies are backing software that could help employers tie the data directly to wellness programs run by third parties, thus using that tracking data to offer lower monthly premiums.

There are already a number of new startups that are making it easier for you (and employers and insurance companies) to view fitness information from a variety of devices. One example is FwdHealth. In theory, an insurance company could use a tool like FwdHealth’s to determine a person’s fitness/health level and adjust premiums based on that level. This means that healthier individuals would no longer be subsidizing the healthcare costs for those leading less-than-healthy lifestyles (who would presumably pay more).

The precedent for this type of monitoring comes from the auto insurance industry. For years drivers have been allowing their insurance companies to track their driving habits in return for lower premiums.

The Globe and Mail published a fantastic article on this subject late last year. In that article some of the shortcomings of personal fitness data is exposed – that a single person’s data is not statistically valid and worse, different trackers use different algorithms to determine fitness levels. This lack of standardization could lead to biases.

One persistent problem is accuracy. Because of designer or user error, two different fitness trackers may come up with wildly different estimates of a user’s activity levels. But an even bigger issue for insurers is fragmentation. Not only are there hundreds of fitness trackers and apps available, many of them also use cryptic, proprietary algorithms.

We are certainly in the early days of fitness data, but as devices become smaller, cheaper and more ubiquitous, we will soon be awash in personal data. The question is, would you trade your personal health data for added financial or health benefits?

Resources
“Sharing Too Much? It’ll Cost You.” Cheryl Conner, Forbes, October 19, 2012 http://www.forbes.com/sites/cherylsnappconner/2012/10/19/sharing-too-much-itll-cost-you/, accessed February 9, 2014

“PSA Uses ‘Psychic’ to Demonstrate Dangers of Sharing Personal Info Online” Melissa Knowles, Yahoo, September 25, 2012 http://news.yahoo.com/blogs/trending-now/psa-uses-psychic-demonstrate-dangers-sharing-personal-online-174017116.html, accessed February 9, 2014.

“Are we sharing too much online?” Dean Obeidallah, CNN, August 16, 2013 http://www.cnn.com/2013/08/16/opinion/obeidallah-social-media-sharing/, accessed February 9, 2014

“In Online Patient Communities, How Much Sharing Is Too Much?” Lindsay Abrams, The Atlantic, February 4, 2013, http://www.theatlantic.com/health/archive/2013/02/in-online-patient-communities-how-much-sharing-is-too-much/272737/, accessed February 9, 2014

“How Much of Your Personal Health Information Should Be Online” Brian S. McGowan, The Atlantic, March 19, 2012, http://www.theatlantic.com/health/archive/2012/03/how-much-of-your-personal-health-information-should-be-online/254375/, accessed February 9, 2014

“3 reasons why patients should use social media” Naheed Dosani MD and Jeremy Petch PhD, KevinMD.com, February 3, 2013 http://www.kevinmd.com/blog/2013/02/3-reasons-patients-social-media.html, accessed February 9, 2014

“Market for embedded health monitoring-gadgets to hit 170M devices by 2017” Julie Bird, Fierce Mobile Healthcare, August 3, 2012 http://www.fiercemobilehealthcare.com/story/market-embedded-health-monitoring-gadgets-hit-170m-devices-2017/2012-08-03, accessed February 9, 2014

“Will Body Monitoring Implants Be The Future of Healthcare?” Adam Ozimek, Forbes, March 8, 2013 http://www.forbes.com/sites/modeledbehavior/2013/03/08/will-body-monitoring-implants-be-the-future-of-healthcare/, accessed February 9, 2014

“In-home health monitoring to leap six-fold by 2017” Lucas Mearian, ComputerWorld, January 22, 2013 http://www.computerworld.com/s/article/9236026/In_home_health_monitoring_to_leap_six_fold_by_2017, accessed February 9, 2014

“Get a discount on health care — if you wear a tracking bracelet” Stan Alcorn, Marketplace, October 11, 2013, http://www.marketplace.org/topics/health-care/get-discount-health-care-if-you-wear-tracking-bracelet, accessed February 9, 2014

“Self-Monitoring Tools Help You Stay Healthy” Catharine Paddock PhD, Medical News Today, January 14, 2013 http://www.medicalnewstoday.com/articles/254902.php, accessed February 9, 2014

“Tracking employees’ exercise regimes to reduce insurance premiums”, Yahoo Small Business, October 22, 2013 http://smallbusiness.yahoo.com/advisor/tracking-employees-exercise-regimes-reduce-insurance-premiums-101358876.html, accessed February 9, 2014

“How insurers are turning to fitness apps to decide your health coverage” Omar El Akkad, The Globe and Mail, December 19, 2013, http://www.theglobeandmail.com/technology/how-insurers-are-turning-to-fitness-apps-to-decide-your-health-coverage/article16065068/, accessed February 9, 2014

“Is Too Much Privacy Bad For Your Health?” John Wilbanks, NPR, January 31, 2014, http://www.npr.org/2014/01/31/265700003/is-too-much-privacy-bad-for-your-health, accessed February 9, 2014

“Are FitBit, Nike and Garmin Planning to Sell Your Personal Fitness Data?”, Dana Liebelson, MotherJones.com, January 31, 2014, http://www.motherjones.com/politics/2014/01/are-fitbit-nike-and-garmin-selling-your-personal-fitness-data, accessed February 9, 2014

“Social login: personalisation mustn’t be at the expense of trust” Patrick Salyer, The Guardian, February 3, 2014, http://www.theguardian.com/media-network/media-network-blog/2014/feb/03/social-login-privacy-personalisation-facebook, accessed February 9, 2014

“Why Letting Your Insurance Company Monitor How You Drive Can Be a Good Thing” Soulskill, Slashdot, November 2013, http://beta.slashdot.org/story/194387, accessed February 9, 2014

“How a Creepy Car Insurance Idea Could Save Thousands of Lives (and the Planet)” Matthew O’Brien, The Atlantic, November 30, 2012, http://www.theatlantic.com/business/archive/2012/11/how-a-creepy-car-insurance-idea-could-save-thousands-of-lives-and-the-planet/265745/, accessed February 9, 2014

Image Credit

Jim Larson, Fast-Runner-Slow-Shutter http://flic.kr/p/bKPUdx 

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3 comments

  1. grayconnections · · Reply

    I may not be able to join the chat tomorrow night, so I’ll post my predominant thought here in hopes someone will tweet it if I don’t:

    Do we really know who reads our posts in “private” online patient forums? Would people share so freely if they knew?

  2. […] week’s topic was particularly interesting: “Privacy vs. Health: Would You Make The Trade?” Our discussion touched on whether it’s possible for a patient to share too much health […]

  3. […] Privacy vs Health, February of 2014 […]

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