It’s a big anniversary, this spring – this week, even. Ten years ago the whole issue of personal health data exploded into the headlines. It was about something I wrote here, not having a clue it was any kind of a big thing, but it ended up on the front page of the Boston Globe on April 13. In one view, in the decade since then not much has changed, but in another view, an enormous amount of infrastructure has changed, and I think we’re on the verge of an eruption due to the success of the new FHIR data interface.
So in the coming days I want to go back and look at where we were then, how the future looked then, what happened when we tried, and what it led to in these ten years. Ultimately I’ll want to look forward at what’s happening right now – because it is finally starting to happen – and what that might mean for you and your family.
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Today we have a huge wave of health-related apps on mobile devices, but in the Spring of 2009 that was all just beginning. Few people had smartphones and there were very few patient portals and NO data interfaces. Then the two “500-pound gorillas” of tech back then, Google and Microsoft, announced software that would more or less let us fetch [parts of] our data from hospitals who wrote custom software to connect to those services – separate software for each of them, which is quite a burden. (That’s why standards are important.)
As you’ll see below, I was highly skeptical because of trust about privacy. That is one concern that has proven more and more valid in these ten years since.
But then I had an epiphany, and decided to try it. And the data from my hospital blew up in my face. Here’s part 1. (I’ll add a few “ten years later” comments mid-stream [in this style].)
Cross-posted from my own blog a week ago (back in 2009).
“I’m putting my data in Google and HealthVault”
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 [yes back then, too], 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)[yes back then] 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 kidney 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:
| 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:
| 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.
2019 update: Google Health was discontinued years ago, and just last week Microsoft announced that HealthVault will die on November 20.
What if an evil politician (take your pick: Dick Cheney, Hillary Clinton, Putin)[yes back then] puts the squeeze on Google to disclose such information so they can use it against you?
Are you serious? Putting Hillary Clinton’s name between Dick Cheney and Vald’ is highly offensive to me. You’re most certainly entitled to your opinion.
I must have made an error in my belief that this was a legitimately clear headed patient advocacy campaign.
Best wishes
Hi Kate! I don’t believe we’ve met.
I apologize for the impression it appears this created – in the 11 years since I wrote that in 2008, not a soul has had that reaction till now. But I apologize in any case. I assure you, the choice of names back then was purely arbitrary: my point was that if we (all) opt to put our data into any big database, especially these tech companies, we need to be well aware that there’s a risk it will be mistreated.
That message is not at all dependent on one’s politics, and I didn’t want my message to sound like it was, because IMO it’s essential for people to realize that one’s health and health data are not political issues – even though since 2008 some have tried to politicize EVERYTHING about healthcare. In any case, I personally know people who believe Cheney is evil incarnate, and I know people who believe Hillary is. People need to understand the value and importance of having good quality health data that’s reliably safe and private. And that’s true for people anywhere on any spectrum, even if I (or you or anyone) think they’re nuts.
Again, no offense intended – I know, because I know what was in my heart & mind when I wrote it. ALL people need safe access to health care, which requires safe stewardship of health data. No matter who’s in power.
Will you be using Apple Health Kit?
I’m sure I will, though that’s only possible because I have an iOS device, which is way less than half the world, so my eye is also on how FHIR might offer comparable benefits to everyone!