Cross-posted from my own blog a week ago.
I’ve decided to go ahead and put my data in Google Health and MicroSoft HealthVault.
(Note: MicroSoft HealthVault is a different kind of thing from Google Health. About the only thing they have in common is that I can put my health data in them. For this post I’ll only discuss Google, but the concerns people have about the two are similar, and so are my thoughts.)
This is something of an earthquake on The Dave Planet. When Google Health was first announced in January 2008, I was completely distrustful and wrote What’s next, Google Health??, concluding with this:
GOOG’s stock is doing great and I love their free tools, but there’s no way in hell I’m giving them sensitive personal data, regardless of what their policy says. New motto for 2008: Don’t Be Stupid.
It was a direct slam against Google’s long-professed unofficial motto “Don’t Be Evil.” I expressed my concern that Google might succumb to government pressure and dish out personal medical information that someone had entrusted to Google Health. I cited how Google had caved in to China’s government, and how Google CEO Eric Schmidt had severely punished CNET.com for googling his personal information and publishing it. I saw hypocrisy.
Others agreed. One online forum discussed the potential for abuse, given that Google collects enormous information about each of us as we browse the web and use Google’s search features – they know what you’ve searched for and (through ordinary marketing software that most web sites install) they know what sites you’ve visited.
They say they won’t use that info; but… what if? What if an evil politician (take your pick: Dick Cheney, Hillary Clinton, Putin) puts the squeeze on Google to disclose such information so they can use it against you? That’s less improbable than what actually did happen to Valerie Plame. In cases like that, laws will not protect you.
In online discussion groups, experts in “search engine marketing” joked about it: If Google knows you have a kidney problem, then the Google Maps “Street View” feature might point out potential donors, and the ads on the side of your screen might start promoting bathtubs and ice. (Yes, people did joke about that.)
That’s a bit over the top, but you get the point.
Similar concerns continue today – this delightful image appeared on a ZDNet post this month, titled Is Google health corrupt?
So why have I gone over?
- First, in the past year an increasingly wide range of people I trust have said “The data you’re concerned about is already not as secure as you think.” That doesn’t leave me any more comfortable but I’ve come to accept that my choice of action won’t make much difference.
- Second, and more importantly, I’m concluding that we can do more good by aggregating our data into large, anonymized databanks that smart software can analyze to look for patterns. Early detection means early intervention means fewer crises.
Diabetics are already starting to do things like this. And the Cambridge MA-based PatientsLikeMe is a full-blown example of a community (ALS / Lou Gehrig’s disease) where patients are tired of waiting for the medical industry to produce results. They’re uploading their data (anonymized), sharing it, looking for patterns, even creating their own clinical trials. - The third aspect, ultimately the deciding one, is something I see all the time in my day job, where we study new software tools: the power of “mash-ups.” That’s the ability to slap together two pieces of software (or data) that were created without knowing that the other one exists, and making something new out of them without anyone planning it in advance. Things can just grow in any direction people want.
Mash-ups are a big part of what makes the Web what it is today: Anyone can put a Yahoo Map on their web site, I can take someone’s YouTube video and put it on my blog, etc.
The power happens because this lets people create software gadgets without knowing how they’ll be used, it lets people build tools that use data without knowing where the data will come from, and it lets people build big new systems just by assembling them out of “software Legos.”
And in healthcare, that’s what free public tools like Google Health and Microsoft HealthVault enable. Here’s the personal example that hit me recently and tipped me:
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When I was discharged from the hospital after my first week of Interleukin, I was given a complex medication schedule grid – which had to be created with pencil and ruler by a highly trained nurse. This was not a sensible use of her time. So, being a software thinker, I spec’d out a “Med Minder” program that would take prescription instructions (“take this one 3x/day, take this one with meals,” etc) and spit out a nicely printed daily schedule. I had additional ideas: “mash it up” with a database of pill images so you can see what pills to take; “mash it up” with a database of different Walgreen’s pillboxes so you can see what to put in each cell of your particular pillbox. I talked to a few people about it and hadn’t found anyone interested in the idea. But at the Google Health booth at a recent trade show, look what I saw: ePillBox.info. It takes your prescription info from Google Health and tells you how to fill your pillbox. It was an epiphany: put my data in there, and I get access to mash-ups. All kinds of potential tools that I know could be useful become possible. The healthcare establishment isn’t getting around to doing them, but ordinary data geeks are. |
So here’s how it boils down:
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My goal is to help create a new world where healthcare is enormously more efficient than it is today, and where important new developments happen enormously faster than they do today. And with that in mind, the advantages of uploading our data far outweigh the risks. |
So I’m in.
Great post and insights, Dave! Thanks for sharing. I’ve written about the benefits of PHRs, including Google Health, and I too have signed up.
As a patient, I now have more information available about my personal health, and therefore I have better information to enable better knowledge and decisions regarding my health care.
As a nurse, I want to help teach people how to access these low-cost or free services that help them gather the information they need to become more informed about their health. Google Health and Microsoft HealthVault software – and maybe others – provide this opportunity.
Dave,
Thanks for cross-posting here. One quick question (for me, anyway – it may take you longer to answer it):
If you had a condition covered by PatientsLikeMe, would you still choose Google Health?
Dave,
I hear what you’re saying, and I appreciate your analysis. What you haven’t accounted for is those groups OUTSIDE the government who want your information.
You seem to have stable employment and decent health insurance. But what about those who don’t? Last week 80,000 people who thought they had stable employment and decent insurance got laid off.
So your information goes online, gets hacked or sold by google or Microsoft, perhaps aggregated, perhaps not (esp if its hacked) — and your next potential employer gets ahold of it OR your next potential insurer learns of your pre-existing condition….
I’m a firm believer in PHRs and electronic records in general. But, the freebies like Health Vault and google health are huge targets. Better to go with one of the smaller, subscription services that will concentrate on better security and promises you (to the extent they can) to keep your identity anonymous.
Susannah,
My gut response when you tweeted this question was “Boy, that’s gonna take some thought: what are the relative advantages? Especially since I don’t know details about PatientsLikeMe.”
But in two seconds I realized “It’s not either-or, so the question becomes, if I had the special value of PatientsLikeMe for that condition, would it change my thoughts about Google Health?” No. I’d still want access to that world of yummy mash-ups.
Time will tell but I won’t be at all surprised if in five years we find that “we out here” have built a world of viable, interoperable personal health records, and the stodgy old establishment will still not have figured out how to make one of their own that’s interoperable, so all those proprietary systems will just add ours as one of the formats they can read.
Trisha, you’re right, those non-government risks are completely real. At the TEPR conference last month I told Google product manager Jerry Lin that people are concerned about things like the credit card break-in that happened at TJX.
This is why it’s an earthquake for me. I know all that, and for me I still choose to jump into the (data) pool, knowing it could have invisible bitey things in it.
But I fully understand the concern you cite and I don’t disagree with anyone who chooses differently from me; nothing could be a more personal choice than what to do with our health data. And if I’m about ANYthing, I’m about personal choice.
Please give us a list of the smaller subscription services. And let’s encourage ’em to play along in the world of mash-ups! To do that, they’d need to use the same API (mash-up interface) as Google Health, which I would hope isn’t too difficult.
I just stumbled across another thought-provoking post on this topic:
5 ways google health could be better
http://mark.hullapalooza.com/5-ways-google-health-could-be
It’s worth a read.
Funny, I misread the title of that post – thought it meant “Might be better than not putting your data online.” Instead, it’s 5 ways Google Health could be *made* better.
You’re right, it’s a good post. And btw, I haven’t done the move yet… you’ll hear from me when I do.:)
Dave,
You asked which of the PHR apps are good, and I can’t honestly tell you any that I think are superior to others. Nor do I have any clue at all about which ones might use the same API as google (although I’m not sure why that’s so important.)
What I can tell you is that AHIMA (American Health Information Management Association) keeps a list of PHRs on its website: http://myphr.org/resources/phr_search.asp
That list is comprised of the ones that charge a fee. (There is also a list of freebies which I think should be avoided.) It’s up to each of us to review privacy and legal statements to determine which ones will protect our information to the extent it needs to be protected.
Hi Dave,
As always great post! Keep it flowing.
Did you get a chance to try out TrialX app?
It uses PHRs to find matching research studies.
The app is available on both Google Health and HealthVault
https://www.google.com/health/directory?url=trialx.org
http://www.healthvault.com/websites/AppliedInformatics-TrialX.html
Would love to hear your thoughts about this application.
Best
Sarah