Four years ago this week, e-Patient Dave published, “Imagine someone had been managing your data, and then you looked,” and forever changed the national conversation about health data. I have described that post as an earthquake — a surprise to those who were not looking for signs and indicators of trouble, not a surprise to those who listen and learn from patients. If you’re new around here, read the post and skim the 175 (!!) comments to get an idea of its impact.
I’d like to honor the anniversary by raising some new questions about health data in this cross-post from my personal blog:
Who provides the fuel for the health data fire? Hint: Look in the mirror.
“If iron ore was the raw material that enriched the steel baron Andrew Carnegie in the Industrial Age, personal data is what fuels the barons of the Internet age.” – a line from Somini Sengupta’s article in the Sunday New York Times, “Letting Down Our Guard With Web Privacy.”
I think personal data is fueling health innovation, which is why I hope Sengupta’s article is widely read in the health world. Who are the barons in the new health care enterprise? Who are the serfs? What assumptions are being made and what choices do people have about their health data — and are they aware of them?
In the article, Sengupta profiles Alessandro Acquisti, a behavioral economist who sees himself as an “observer holding up a mirror to the flaws we cannot always see ourselves” (ditto, and in my view, research can also be a window).
What can we learn by looking in Acquisti’s mirror? An excerpt from the article:
Our browsing habits, search terms, e-mail communication — even our offering of our ZIP codes at the supermarket checkout — reveal bits of information that can be assembled by data companies, usually for the purpose of knowing what sorts of products we’re most likely to buy. The online advertising industry insists that the data is scrambled to make it impossible to identify individuals.
Mr. Acquisti offers a sobering counterpoint. In 2011, he took snapshots with a webcam of nearly 100 students on campus. Within minutes, he had identified about one-third of them using facial recognition software. In addition, for about a fourth of the subjects whom he could identify, he found out enough about them on Facebook to guess at least a portion of their Social Security numbers.
The point of the experiment was to show how easy it is to identify people from the rich trail of data they scatter around the Web, including seemingly harmless pictures. Facebook can be especially valuable for identity thieves, particularly when a user’s birth date is visible to the public.
Does that mean Facebook users should lie about their birthdays (and break Facebook’s terms of service)? Mr. Acquisti demurred. He would say only that there are “complex trade-offs” to be made.
Indeed. I have heard about complex trade-offs before — and I bet you have, too.
What would you trade for a chance to discover whether a new drug will work for you or your loved one? What would you trade for a chance to contribute to an experiment that could improve your life? What data would you share for the greater good, even if there was no direct benefit to you?
Use of aggregated — or highly-identifiable, personal — data is not all done with nefarious intent. It can, in fact, be life-saving. But who holds the power when you face those choices? What are the patterns of behavior for the old way of doing things? How can people learn how to contribute in new ways to health research? What would happen if patients were able to fact-check their records and improve the data fueling innovation?
Join me in reading the article and thinking through these issues. Check out additional resources related to the effects of sharing and exposing personal information, curated by William Gunn and others. Please post observations and questions in the comments.
Note: I don’t want to lose the great insights that Nick Dawson and e-Patient Dave already wrote in the comments on my personal blog, so I’m pasting them here:
My first thought, with articles like Ms. Sengupta’s, particularly when couched in the language of your first few paragraphs, is to be part of the voice heralding in the new age of consumerism. More data in the hands of patients, to me, signals a change in the traditional doctor patient relationship. Maybe we should start by calling it a patient doctor relationship.
But this is deeper. Sengupta’s article and your post point to something more meaningful and widespread: the acceptance and promotion of vulnerability as a positive trait. Giving up data also means relinquishing fears about what the data reveals. Arrest records, shopping habits, health data —often (not always) we guard those things against the judgement of others. What happens when we let down those guards in favor of feedback, scientific and societal advancement or shared decision making?
I love behavioral economics. Kahneman’s epic Thinking, Fast and Slow is mandatory reading, I think, for anyone who wants to fully grasp the gulf between what people honestly think they want and what they do. it’s not just stupidity or hypocrisy; Kahneman and his partner Tvesky formally established the mechanisms by which the mind loses its grip and does something other than it honestly believes it’s doing. Without comprehending this we have little chance of creating policies that have a snowball’s chance.
I’d hoped to post something about my own data post, to which you linked – it appeared four years ago today. Boy, how the world of health IT has changed since THEN: the ARRA/HITECH incentives had just come on the scene, the words “meaningful use” had barely been signed into law…
… And people were awfully naive about data, at least in health IT. Some were foolishly naive, unaware, clueless but acting confident; others were just charmingly innocent. As far as I can tell, that’s the WHOLE reason people were so shocked about my post: they were naive about things that are routine to data geeks who actually get their hands dirty with the stuff.
Here’s an anti-naivete tip: it’s a big mistake to take data created in one context and read it back in another. That’s what happened in my case four years ago: data recorded for insurance purposes was read back as clinical data. It gave a catastrophically wrong impression. And people were amazed.
If I can, then, take a different tack on your post: you mentioned data fueling innovation; yes, data is fuel, data is combustible. It can be powerful, but if it’s contaminated it can wreck your engine,and if it’s mishandled it can blow up in your face. In my famous case the data was both dirty and mishandled.
I hope I’m not stretching it when I say that like medicine itself, data can work miracles; but if we expect miracles just because it CAN do miracles, we are naive. We can get really disappointed, and when things go wrong people can get upset. Mix that with the illusions going on in our earnest minds, and it’s a setup for disconnect.
Thank you, thank you for noting this moment. I failed to do it yesterday, life being what it is. And there’s some magic to capturing it IN the moment.
An earthquake’s an earthquake because things have come loose under the surface, and the ripples spread far.
— On April 13 the Boston Globe put this on the front page; 9 days after that was the “Health 2.0 Meets Ix” conference, which led to coverage of the issue in US News that August, and the first invitations for SPM members to testify in Washington
— In May the now-famous meeting happened in NY at the Markle Foundation, where innovators petitioned the VA and CMS to let patients download their data. “How will we do it?” they asked, and someone said “Just put a big blue button on the site that says ‘Download my data!'” What followed has led to a million downloads and the new Blue Button+
— In June, HealthDataRights.org went live. (That site says “down for maintenance” right now.)
And as the Meaningful Use discussions unfolded in Washington, a central issue was whether patients should have access. Many people have said that this episode was a key trigger.
Reflecting on how it unfolded, at the Mayo-Ragan Social Media conference in 2011, I said “Social media gave me a voice; traditional media [the Globe] gave me credibility and impact.”
It’s a new new world. Thanks to everyone here who’s picked up the torch and carried it around the globe. (The *lowercase* globe.)
You are very welcome!
Speaking of the Boston Globe, Bryan Vartabedian just wrote a post entitled, “The Cost of Ignoring the Streisand Effect”:
“More people read Boston Globe feature articles than patient blogs. Even more people read blog posts, comments, tweets and Facebook remarks about Boston Globe feature articles than patient blogs.”
What is the cost of ignoring the patient POV? I think we have a few examples now.
Thank you Susannah for pointing to this very interesting research! There is a lot of Acquisti’s research that applies to our world of eHealth (e does mean electronic, in this case:-)
In particular, in “Misplaced Confidences: Privacy and the Control Paradox”, Acquisti and collaborators state that “the contrast between control over the publication, and control over the access and usage of personal information, is at the center of our enquiry.”
This is essentially the same inquiry that has been the cornerstone of all the work leading to the early ONC decisions, already noted by Dave (the Markle Framework and particularly the CONNECTING CONSUMERS (Markle Common Framework for
Networked Personal Health Information)) as well as what made us create HealthDataRights.org.
So far, almost all efforts to gain access/share our “health data” has been connected to the various versions of an electronic record. I am now convinced that this singular focus misses the bigger point of “nothing about without me”. The next wave of big value generation, from data collected from individual patients won;t be simple digital records of labs or office visits results. Biological samples are, potentially, a much richer source of data, and, if you pay attention, lots of efforts are being spent to make sure these samples are going to be put in silos, where they will be unreachable to the patient, because their perceived value is great. In health, when you think something is moving in the right direction, it’s easy to miss where walls will be erected to protect the next iteration of value generation. That’s what happens when you let a system become a run-away.
Thank you, Gilles! I was thinking of you and these points you are so good at making when I wrote, “Who are the barons in the new health care enterprise?” Could it be patients themselves? If they play their cards right?
Visions of the Google Stethoscope dance in my head!
Will it be like Google Glass and remember everything it “sees”?
Wow. Some very interesting questions and links. I think you are spot on that we (consumers) will provide the fuel for the health data fire.
I didn’t start with the intention of becoming part of the DIY revolution, but that changed after I developed an extremely rare (unknown at the time) autoimmune condition.
How do we migrate to a system that respects health consumers’ needs (privacy, control, relevancy)? Revamping the current system will be difficult. It’s just not structured to cater to patient demands:
The quickest way would be build a private health platform — as attempted by Google Health — that is designed specifically for patients.
What will fuel this private health platform? The same thing that drives today’s predominate photo-sharing platforms (like Pinterest and Facebook)=> Social. Let people share health information as easily as they share photos and we could do great things together.
First, Brett, where the heck did you come from?? That’s a heck of a good post. What’s your background??
I couldn’t agree more about the who-centricity of the two markets. I’ve long asserted that core reasons for medicine not acting like a market is that the ultimate stakeholder lacks two major things (at least) that are part of a functional market:
(a) Information about options and each one’s quality and price. (How can you be an effective consumer without that?)
(b) Consumer mobility. Even if I have that information, if I can’t pick up and go to the provider I want, then good ones won’t be rewarded and the market can’t ditch providers who suck. (In that regard it’s quite like the bogus “two year contract” prices on phones, and the cancellation penalties on cell phone contracts. Right now I hate my current phone and want to try a Galaxy, but it would cost me 4 months’ bill to make the switch.
Anyway, great post over there. How come that site doesn’t allow comments??
Thanks for coming here. I don’t think I’ve seen you here before.
Hi Dave, Thank you for taking the time to read that post and for the warm welcome. And congrats on the four year anniversary! You’re fighting the good fight, inspiring ePatients everywhere.
I totally agree with your comments. I don’t have nearly the insight or experience you do, but am glad it still resonated. I work closely with a number of medical device manufacturers doing technical sales. Some of the stuff I’ve seen is heart wrenching. Where did I come from? I guess you could say I’ve been under the weather for about a decade. :) Now that I’m feeling better I’m trying to figure out where to go to join the discussion.
Anyway, hope you don’t mind if I engage (cyber stalk) you a bit. I’m a fan and agree with very many of your ideas.
Where to go to join the discussion?? Well, that would be this society – http://www.participatorymedicine.org/join-us. A busy listserv, a browsable forum (different from the listserv), and more.
I’m not very active at present within those systems because my head’s spinning, but I also have my site at epatientdave.com, and many members do too.
Thanks a lot for the recommendation. I joined and will be looking around more hopefully this weekend. Totally love the whole participatory medicine mantra.
nothing about thee without thee, Brett!
I am looking back at posts related to Facebook in advance of their 10th anniversary. I’ll definitely include this one on the “greatest hits” list, adding the following article from InformationWeek for posterity:
What Patients Will Share To Improve Care:
Surveys show chronically ill patients and the general population are both willing to share personal information to help improve quality of care.