A Final Word on Breach Notification

The new data breach notification rules for covered entities and PCHR Platform providers go into effect on September 23 (for covered entities) and September 24 (PCHR Platforms and providers). There’s a nice wrap-up here.

One big change from the prior environment is that the business associates of a HIPAA covered entity are now directly covered by the rule. Previously, protections were extended by contract with the original CE. Practically, I don’t think this makes a huge difference, since the Covered Entities would have just gone back and renegotiated the existing agreements to share the notification burden. Extending those requirements through regulation probably even saves some money and lawyer time, since there’s now no need to go and revisit all of those agreements.

The final rule does, however, have a pretty substantial loophole. Notification is required only when there is a chance of substantial harm to the person whose data was released. And that determination is made by the covered entity. Obviously, there is a huge opportunity for things to go wrong here. But the opposite extreme – mandating disclosure at all times – would be overly burdensome and would also have the very negative side effect of scaring consumers who receive breach notifications for trivial things – their city and phone number were accidentally released to a contractor, who then had a laptop stolen while on vacation in Guatemala. Odds of harm to the patient are pretty close to zero, and putting the burden on them to worry about sophisticated identity thieves is not particularly fair.

So I don’t think they got this one entirely right. A public audit process might be the solution – all breaches need to be disclosed, and outside groups can choose to make a stink about situations where individual notifications should have occurred but didn’t. I suspect this would get behavior into line pretty quickly.

Grant Central is Here!

On Thursday, our team released Grant Central, a tool to help life sciences researchers find grant opportunities, identify new collaborators, and manage the grant application process. It’s one of the things, along with Clickframes, that we’ve been working on for most of 2009.

Here are the highlights:

  • Search through all US government grant opportunities for life sciences, including all HHS agencies, (including the National Institutes of Health and the Centers for Disease Control) as well as the Department of Defense and the National Science Foundation. Searches can be by keyword or award size.
  • Comment on grants, enabling a conversation across the Harvard community.
  • Query the Harvard faculty Profiles database for new collaborators and invite them to participate in a grant project.
  • Manage grant projects using the aptly-named “Projects” module. Projects allows you to track due dates, tasks and documents, as well as maintaining an online discussion forum for your grant project. Grant Central also allows users to manage their NIH Biosketches, Other Support Forms and Lab Information documents -  no more chasing them down the day before the proposal is due!

We’ll post more about it over the next week or two. You won’t be able to see the whole application if you don’t have a Harvard Medical School eCommons account, but you can still use the grant and collaborator search engines.

And if you’re interested in Grant Central for your own institution, drop us a note. The application was developed as part of Harvard Catalyst, the Harvard Clinical and Translational Science Center – if your institution has a CTSC, you can get Grant Central too.

Yes, it’s been a little quiet around here…

Summertime, and all that. However, the big reason has been the impending release of a pretty major project we’ve been working on for the last several months. We took a couple of government databases, some existing systems at Harvard Medical School, the latest lightweight, web based productivity tools, put them all in a blender, and kept the really good bits.

It’s not available to the public yet, but we’re planning for later in August – development is done, and we’re in integration and scalability testing right now. If you do academic research, you’re going to like this this one.

In the meantime, blogging to intensify.

Future of Google Health

John Moore at Chilmark Research asks today if Google Health is irrelevant. I’m re-blogging it because I agree with him. Microsoft is easily the leading player in broad audience Personal Health Record platforms. That doesn’t mean their product is ideal – it’s certainly not – but they’ve been improving it steadily and have integrated it with a very cohesive strategy aimed at engaging with the healthcare industry as a whole. Google hasn’t done that.

One take-away I had from the Microsoft Health Solutions Group conference in June (besides one heck of an airplane-acquired infection) was how tightly Microsoft is linking Amalga UIS – its hospital intelligence/data warehousing offering – with HealthVault. Amalga is the back-door – hospitals will make the data integration investments because of bottom-line and quality improvement benefits that are realized by UIS. But once that work is done, integrating with HealthVault is just flipping a switch. Microsoft has allocated its R&D money accordingly.

Google, on the other hand, still strikes me as simply dallying in healthcare. They’ve done some good work in focused healthcare search, but that’s pretty much where it ends. I completely agree with John’s statement that Google has gotten disproportionate attention simply because it’s Google. I’m not really inclined to start trying to take down the myth of Google here, but it’s safe to say that the company isn’t omnicompetent. From very personal experience, it was quite difficult to get projects in PHR off the ground during the six months after Google Health leaked but before it launched. There was a huge chilling effect – everybody wanted to wait and see what Google would do.

Boston Globe Says Boston Rocks (in Health IT)

Nice article in the Boston Globe on Massachusetts’ leadership role in the Health IT community. “The Silicon Valley of Health IT.” And it’s true, too – more HIT innovation, both academic and corporate, has come out of the area inside Route 495 than anywhere else in the country. Even the big out of state players (Epic, Cerner) and the new entrants (Google, Microsoft) have at least some technological roots here.

So good for us.

Chrome OS has nothing to do with PHRs

I usually don’t bother picking on other people’s editorials. But this one, from FierceHealth IT (which I usually like, incidentally – it’s a nice roundup of daily HIT stories) just struck me as trying to fill space:

Google’s Chrome OS may heat up PHR competition with Microsoft – FierceHealthIT.

Google’s Chrome OS has nothing to do with healthcare. This is not a signal of the shift to cloud computing – that signal flare went up several years ago. Google won’t “tightly couple” Google Health to Chrome OS. HealthVault is just as web based and interactive as Google Health (admittedly, a little more complex to use, but you get more out of it).  Both systems have all kinds of big, enterprise-class integrations behind them.  Chrome OS is about Netbooks – they’ll ship a few million units on cheap hardware, and it will be easier for us to sit in front of the TV at night checking email. I won’t say it will never be a competitive desktop operating system, but that would be many years and several paradigm shifts down the road. A new version of Google Calendar would be more significant – at least you could integrate that with appointment reminders somehow.

The last sentence kind of sums it up:

I don’t pretend to have any kind of crystal ball here. But I do think it’s hard to argue that the PHR world is a lot more interesting with the Chrome OS in it.

That’s verbatim. And I agree – it is VERY hard to argue the proposition that Chrome OS makes any kind of difference whatsoever.

Android, by the way, is a different story – while it’s also too early to say, Google’s OTHER OS project, intended at the moment for cell phones, could enable a range of interesting healthcare applications. Since it doesn’t require always-on connectivity, Android could form the base of a handheld computing ecosystem in healthcare. Apple’s iPhone OS could do the same thing, and if Apple brings out a tablet, as they’re now expected to, I’d look for a wave of innovation coming off that platform. Local storage coupled with intuitive interfaces and great performance? That matters.

EHR Challenges in the Netherlands

My friend FJ, who blogs at TechSocioTech, sent me a link to a news article from a Dutch newspaper, covering the results of a survey of 1800 patients by the Dutch Patient Consumer Federation. Since my Dutch is poor, he kindly provided me with a quick translation (probably not intended for blog publication, but it’s a lot cleaner than Google translate!). It speaks for itself:

AMSTERDAM – Medical records are often full of errors and incomplete. Almost 60 percent of the people who responded to a campaign to notify the Dutch Patient Consumer Federation (NPCF) had to correct or supply missing information to caregivers because insufficient information was available.
Moreover, participants regularly noted egregious mistakes.Therefore a large majority has a negative attitude towards digital medical records. The case files of one in five patients were even lost at one point or another, a spokesperson said.
Most people who are already worried about the medical data are therefore also skeptical about the safety of the SPD. While they worried, two thirds believe that digital exchange of patient data is helpful in case of emergency,  medication, and clinical insights. 1800 people took part in the campaign of NPCF. (ANP)

I’ve been trying to find an English copy of the press release, but no success so far. Do we have an entire country of ePatient Daves? This reinforces a simple observation about EHRs in general – they probably won’t be widely accepted until the data quality reaches a sufficiently high level, and that just hasn’t happened yet. Right now consumers expect that EHR data is both more widely available than it actually is, and over higher quality. What happens when they find out?

Barbershop

I really should be writing a lengthy post about a number of important subjects that have come up recently – meaningful use, closed standards, and so forth. Unfortunately I’ve just recovered from a week of fairly aggressive, although not pig related, respiratory illness and so instead I’m going to post a music video about Health IT interoperability. The payoff is at the end.

It’s somewhat amusing to note that I first met Ross on New Year’s Eve, 1999, which happened to be the day he proposed to his wife. We then completely avoided crossing each other’s paths until 2006, when I was at CMS and he was at Pfizer and representing the industry on the AHIC Consumer Empowerment workgroup. We’ve had the opportunity to do some (non-musical) together since, which has been quite a lot of fun.

But if you read this far, one more thing to think about – HITECH has a few billion dollars in stimulus for HIT adoption. It has vastly more in penalties. The math is not uninteresting, and I’m going to do some of it this weekend.

Fed Sponsored, Open Source EHR

Senator Jay Rockefeller (D-WV) has introduced legislation calling for universal adoption of Electronic Health Records. The law would create a “public utility” board within the Office of the National Coordinator for Health IT, and the board would be responsible for coordinating the development of an open source EHR solution. There would also be additional funding (presumably over and above current stimulus dollars) for safety-net providers to cover the full cost of implementation and maintenance for a five year period.

That could be a lot of money. I’m working off the press release here, since I can’t find the text of the proposed legislation online – but I could see that being interpreted as paying for a substantial portion of a provider’s IT budget. There’s no question this would drive adoption for Health IT! It’s unclear that the open source condition would really effect the overall cost of the plan, as software licensing fees, while not trivial, are not the largest component of a hospital or small-office Health IT roll-out. If the goal is an EHR roll-out, why not let the provider pay for Epic with its own budget, and then subsidize the implementation costs (since they’re proposing to do that anyway.) But I digress.

My real question is the efficacy of the “public utility board” for shepherding the open source process. The bill calls for facilitating ongoing communication with the open source community to incorporate improvements and innovations into the “core programs.” I could see this going very badly indeed – I’ve been looking for last night hand haven’t come up with any large scale examples of large-scale government engagement with open source. VistA, the VA EHR system that is often exhibit A when talking about government support for open source, is very much accidental software, as the open source release was the result of a Freedom of Information Act request, and the VA has not exactly taken a leading role in facilitating the VistA open source community.

Open source development “managed” by the federal government sounds like a Bad Thing. A federal grant program for creating and maintaining open source healthcare applications, on the other hand, could be a very good idea – if encouraging an open source alternative to commercial EHRs is a seen as a public good, there’s an opportunity to fund companies to build those open source interoperability components, to support CCHIT certification of open source projects, etc. Many of my reservations about CCHIT would be dramatically reduced if they had a financial incentive to certify as many open source applications as possible – or if the certification of “meaningful use” was contingent on the availability of multiple certified open source alternatives.

The Rockefeller Bill is just a proposal, and if history is any guide it’s not going to move forward, at least in its present form. But this is as good a time as any to start thinking about ways the government can, productively, support the development of open source options for physicians.

(For further reading: Fred Trotter’s really excellent NCVHS testimony on open source EHRs.)

The Patient is the Platform

Doc Searls invented the Internet. Ok, not really – but he was one of the co-authors of the Cluetrain Manifesto, which did as good a job as anybody, and better than most, at predicting the degree to which the Internet would facilitate conversations, rather than just transactions, companies and their customers.

Anyway, Doc is now a fellow at the Berkman Center at Harvard Law, and for the last year or so has been thinking about healthcare:

Doc Searls Weblog · Getting real about fixing health care.

What he’s done here is coined a really nice, pithy term: “the patient is the platform.” I’ve been trying to say the same thing for a couple of years, usually with a variation on the phrase “the only person who knows where all my healthcare data is hidden is me”. We even ran an entire conference on the PHR as a platform in 2007 (and there’s some great video on the web site). I like Doc’s version better, and I’m going to steal it.

On the subject of pithy one liners, at HealthCamp Boston yesterday, John Moore and I ran a session on Consumer and Clinician engagement in healthcare IT. John did a nice job of keeping the discussion focused on human factors (I only dragged it down one rabbit hole when I decided we really needed to talk about microformats), and in the follow-up conversation we came up with another Internet analogy:

The PHR is a patch.

In other words – the health system is broken. Lack of coordination and information sharing is one part of the system failure. Personally Controlled Health Records promise (they have yet to really deliver) to bring disparate parts of the healthcare system together, via the agency of the one actor who actually touches most of them: the patient. But PHRs, and even EHRs, are not healthcare reform. They’re a bridging measure.