Attitudes Towards Health Data

Samsung Gear Fit unboxing - Vernon ChanBlog post by Colin Hung

For the past sixteen days, I have been glued to my TV and phone watching the Olympics. It’s the intensity of the competition that I love seeing. I cheer most loudly for Canadians, of course, but I do enjoy watching athletes from other countries achieve their gold medal dreams.

Seeing the Olympic events has inspired me to rededicate myself to my fitness regimen. Last year, I started going to the gym more regularly – something that I’ve managed to keep doing despite a hectic travel schedule. However, there is one thing that has been missing from my routine – a fitness tracker.

Ever since my Microsoft Band stopped working (due to a combination of sweat and sunblock) I have been tracker-free. At first I was eager to get a replacement, but after reading articles about how the health data generated was being used by companies, I decided to postpone purchasing a new one.

However, now that I’m getting better at exercising, I want to track my fitness with a device so that I can take advantage of several strength and conditioning apps that are integrated with certain trackers. I’m now at a point where I’m much more willing to accept the potential loss of health data security (and privacy) in return for improved health.

Normally this type of decision would not warrant a blog post, let alone an #hcldr tweetchat, but when I told one of my friends about my decision he became quiet animated while telling me I was making a horrible mistake. My friend, told me in no uncertain terms that for-profit companies were just using trackers to harvest valuable health information that they could then mine/use to line their pockets.

Why would you pay someone so that they can put you under constant surveillance?

It was my friend’s use of the word surveillance that struck a chord with me. When I thought about it, he was right. By putting a tracker on my wrist I was voluntarily putting myself under surveillance. My vital signs, my movements and my exact GPS location would all be uploaded to the company that makes the fitness tracker. In a piece by Pew Research Center, Leah Lievrouw, a professor of information studies at the University of California-Los Angeles posits that personal data is the raw material of the knowledge economy:

The capture of such data lies at the heart of the business models of the most successful technology firms (and increasingly, in traditional industries like retail, health care, entertainment and media, finance, and insurance) and government assumptions about citizens’ relationship to the state.

Later in the same article, Bob Briscoe, chief researcher for British Telecom is quoted as saying:

Lack of concern about privacy stems from complacency because most people’s life experiences teach them that revealing their private information allows commercial (and public) organisations to make their lives easier (by targeting their needs), whereas the detrimental cases tend to be very serious but relatively rare.

In other words, it doesn’t take much to induce most people to disclose their personal information. Make something more convenient for us, allow us to do something we’ve never been able to do before or reward us with cute fictitious animals and we’ll willingly let you collect data about us. This is despite the fact that in a post-Snowden world, most people in the US feel strongly about who should get information about them.

In a 2015 survey, Pew Research found 93% of Americans felt it was important to be in control over who can collect personal information. In general, the survey revealed strong views about privacy.

Pew Survey 1

However, that same survey reveals that Americans have very little faith that companies or governments will keep the collected data private and secure:

Pew Survey 2

With such strong feelings and lack of faith, you would think there would be more uproar over the privacy and data usage policies of major corporations. Yet we barely see a whimper. Jacob Davidson of Time worded it best in his provocative article “You Say You’d Give Up Online Convenience for Privacy – But You’re Lying”:

The pattern is clear. Surveillance angst may make headlines, but users will choose their favorite websites and services over privacy almost every time. If people are so indifferent about their online privacy, why do they say otherwise? The answer probably comes down to consumers talking about what they want instead of what they’d be willing to use. We would all like a Facebook that doesn’t track us in the same way that we’d all like free donuts every Tuesday — but that doesn’t mean we aren’t willing to go to Dunkin’ when fantasy doesn’t become reality.

I’d like to think I’m not being fooled. I realize that my fitness data will be sitting on a server somewhere and mined 10,000 different ways in order to glean insights into my buying patterns and those of my peers. But I’m willing to trade that for a healthier life, which I hope to gain through access to more scientific data on my exercise.

I know many others who willingly trade personal information in return for healthcare convenience. They enter information about their conditions into websites that will help them find physicians who might be able to help in treatments. Others provide regular health updates to their insurance companies in return for lower premiums.

How do you feel about health data security & privacy? Has your attitude changed in recent years? What changes do you hope to see in the coming years regarding health data?

Please join our #hcldr tweetchat Tuesday August 23rd at 8:30pm ET (for your local time click here) where will be exploring the following topics together:

  • T1 Fair trade to give companies your health data in return for convenience or cool app that you use?
  • T2 Has the attitude organizations & companies have towards health data security changed in the past 2 years?
  • T3 Has your attitude changed regarding your health data? Are you more comfortable with sharing now?
  • T4 What changes (security, usage, ownership) do you hope to see regarding health data in the next 2 years?

PS. I wrote a post about how I see the Olympic PolyClinics as the potential future of healthcare on HospitalEMRandEHR.com

References

“Step and save: The truth about wearables and health insurance”, Alan Martin, Wearable, 21 May 2015, http://www.wareable.com/wearable-tech/step-and-save-the-risks-of-using-fitness-tracker-to-save-on-your-insurance-premium-1163, accessed 20 August 2016

“Population attitudes towards research use of health care registries: a population-based survey in Finland”, Katariina Eloranta and Anssi Auvinen, BMC Medical Ethics, 17 July 2015, http://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-015-0040-x, accessed 20 August 2016

“Americans’ Attitudes About Privacy, Security and Surveillance”, Mary Madden and Lee Rainie, Pew Research, 20 May 2015, http://www.pewinternet.org/2015/05/20/americans-attitudes-about-privacy-security-and-surveillance/, accessed 20 August 2016

“The Future of Privacy”, Lee Rainie and Janna Anderson, Pew Research Center, 18 December 2014, http://www.pewinternet.org/2014/12/18/future-of-privacy/, accessed 20 August 2016

“You Say You’d Give Up Online Convenience for Privacy – But You’re Lying”, Jacob Davidson, Time, 25 June 2014, http://time.com/money/2902134/you-say-youd-give-up-online-convenience-for-privacy-but-youre-lying/, accessed 20 August 2016

“Personal Privacy in the Age of Big Data”, Mark Talary, The Opthalmologist, August 2016, https://theophthalmologist.com/issues/0716/personal-privacy-in-the-age-of-big-data/, accessed 20 August 2016

“Customer Data: Designing for Transparency and Trust”, Timothy Morey et al, Harvard Business Review, May 2015, https://hbr.org/2015/05/customer-data-designing-for-transparency-and-trust, accessed 20 August 2016

“The Convenience/Privacy Trade-Off on the Internet of Things”, Robert Stroud, Innovation Insights, 17 December 2013, http://insights.wired.com/m/blogpost?id=6544125%3ABlogPost%3A68901, accessed 20 August 2016

“8 Statistics on Consumer Concerns with Health Data Privacy”, Akanksha Jayanthi, 5 December 2014, http://www.beckershospitalreview.com/healthcare-information-technology/8-statistics-on-consumer-concerns-with-health-data-privacy.html, accessed 20 August 2016

Image Credit

Samsung Gear Fit Unboxing, Vernon Chan – https://flic.kr/p/o3a6Do

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: